Torley
05-22-2005, 07:52 AM
I have been having tests to see what pain meds work. Today I had a diagnostic epidural block and I was pain free for 4 hours. This hasnt happened in like 6 years.
I had a lapascopic cholysecectomy 6 years ago, and have had severe pain ever since, Worse when I eat, lie down and in the evening for which I take morphine.
They have tested morhine etc via IV in the last few weeks and other drugs and they havent shown to have helped in reducing pain via pain tests, where I do not know what they have used.
I had a nerve block 2 weeks ago and that didnt work. I have also had my splanchnic nerves cut previously. Up until now they have thought it has been Chronic Pancreatitis.
Last week the Pain Specialist said that he thought that my nerves had been imprinted calling it wind-up pain in his explanation my pain was nto treated properly and has ended up chronic and imprinted?
Today they injected 5 differnt things via the epidural inserted and the :) 5th one caused my arms, body from breast height to below my navel to be numb and the pain disappeared.
I dont quite know quite what this means and whether, it means tha they can put a block? epidural catheter or somethignm else in to stop the pain.
Does anyone know what this could mean?
I go for another test next week, but today I was so happy at last something that stopped my pain
Not sure where to from here, would welcome input, below is what they did on the test
it took him 75 minutes to get the epidural needles in with misses you wouldnt believe he calle din
my old pain med guy rob, got my old files i told him it took rob 90 minute to do it when he was
half way though and so they grabbed all files and sure enough I was right
well test 1 I reckon was saline I started at 5 no change
test 2 no change
test 3 worse went to a 6 point felt in right then 5 then 4 then 5
test 4 pain 5 pain to left and no change
test 6 well I was over the moon took 4 hours for the block to work off. on test 5 though was pain free/ totally numb breast to below navel and arms for 4 hours and no ****ing pain eg 0/10
I had no feeling eg totally numbed across arms and body ...and this means um................?
I have no idea what this means....with the block working or what it was in it? any ideas? and what
this means for treatment? eg maybe a spinal stimulator or implant pain pump? your thoughts?
Thanks in advance
I had a lapascopic cholysecectomy 6 years ago, and have had severe pain ever since, Worse when I eat, lie down and in the evening for which I take morphine.
They have tested morhine etc via IV in the last few weeks and other drugs and they havent shown to have helped in reducing pain via pain tests, where I do not know what they have used.
I had a nerve block 2 weeks ago and that didnt work. I have also had my splanchnic nerves cut previously. Up until now they have thought it has been Chronic Pancreatitis.
Last week the Pain Specialist said that he thought that my nerves had been imprinted calling it wind-up pain in his explanation my pain was nto treated properly and has ended up chronic and imprinted?
Today they injected 5 differnt things via the epidural inserted and the :) 5th one caused my arms, body from breast height to below my navel to be numb and the pain disappeared.
I dont quite know quite what this means and whether, it means tha they can put a block? epidural catheter or somethignm else in to stop the pain.
Does anyone know what this could mean?
I go for another test next week, but today I was so happy at last something that stopped my pain
Not sure where to from here, would welcome input, below is what they did on the test
it took him 75 minutes to get the epidural needles in with misses you wouldnt believe he calle din
my old pain med guy rob, got my old files i told him it took rob 90 minute to do it when he was
half way though and so they grabbed all files and sure enough I was right
well test 1 I reckon was saline I started at 5 no change
test 2 no change
test 3 worse went to a 6 point felt in right then 5 then 4 then 5
test 4 pain 5 pain to left and no change
test 6 well I was over the moon took 4 hours for the block to work off. on test 5 though was pain free/ totally numb breast to below navel and arms for 4 hours and no ****ing pain eg 0/10
I had no feeling eg totally numbed across arms and body ...and this means um................?
I have no idea what this means....with the block working or what it was in it? any ideas? and what
this means for treatment? eg maybe a spinal stimulator or implant pain pump? your thoughts?
Thanks in advance
Sponsor
Shoreline
05-22-2005, 09:30 AM
Hi Deb, It sounds like you and friar jen have the same doc, where they just dig blindly with a needle untill they think they have it. That was not uncommon 15 years ago, I had a half dozen esi done blindly by anesthesiologist at the hospital. They do epidural blocks for surgery and child birth and don't have time and don't want to radiate a new born with flouoscopy so some docs do get very proficient at finding the spot by feel, But you also have accidents like going to far and nicking the dura which causes a spinal fluid leak and headache, out of 6 ESI's, I eneded up nicked twice requiring blod patches to reparir the holes in the Dura from going to deep . Spinal fluid has little to no clotting ability on it's own so as you lose fluid your brain rest downon your boney skull and the headache islike no other. Bloinded by lihgt and target vomitting. Laing flat helps rlieve the headahe but the quick fix is a blood patch. They inject blood right next to where they punctured the cord, as the blood trickles out of the two holes you have now it slowly clots the leak and tps off the lost fluid which puts an imediate end to a spinal headche.
Thre really is no advantage to doing a blind ESI unless your pregant and don't want o radiate a baby. Floro is the standard and why docs don't use it is part EGO, part ignorance, and when you have physical medecine docs/PM docs or any ther specialty that hasn't done hundreds of these as part of their daily practice in surgery or the maternity ward it's a huge risk and you end up taking 45 minutes to do a 10 minute procedure. Personally I would find somehwere else to have ESI's done under flouoscopy, you too friar Jen. It's not worth experincving even one spinal headache or catching spinal meningitis.
I explained the gatewy theory, phantom pain and pain imprinting to TK in her post the other day, It's still on page one and is long, here is a shortened version/excerpt from my post.
There is this theory called the gateway theory, It's pretty well accepted and explains things like phantom pain, RSD and many othr chronic pain conditions. YOu mentioned nerve imprinting in your other post and that's a component of the thory. The theory goes ruffly like this. You stub your tow, signals are sent to your brain through a number of gates "nerve branches" to the spine and eventually your brain. Normally the gate opens and closes as the stubbed toe will cause the gate to open and close as it swells up, throbs and becomes more painful, your brain gets the signal and you experience pain. Eventually that swelling stops, and the signals deminish and everything goes back to normal except when you catch that toe on the carpet and sheets and you get a few more burst of electic signals through the nervous sytem, wich open the gates again but they normally close like a door after the signal stops. This is normal/acute pain and how it's interpreted.
If you were to park the car on your foot and not pull it out, the messages to your brain would be continually sent keeping the gates open, basicly retraining the gates to stay open and be more effecient, the signal of pain is constant and millions of pain signals are sent to your brain, IF you leave your foot in there long enough and don''t cause total nerve death, there is a chance that once removed the gates will stay open and continue to send the exact pain signal. With the gates wide open and milions of signals having passed through those nerves, the signal can become engrained in nerve tissue too, making your brain think your foot is still under the tire when it's not. LIke phantom pain
Your brain continues to get the same signal and it's response is to dump endorphins continously and you start having dramatic changes in brain chemistry and the perceptin of pain. Please read Dr brookoffs artcile, It explains the difference between chronic pain and acute pain on the most basic levels involving chemical changes, changes in neurotransmitters,The part of the brain interpreting pain, creation of new bio chemicals that actualy cause more pain due to the neuro inlamatory response from these new chemicals or excess chemicals now being constantly produced.
Read this now. Copy, and cut and paste the addy into your search engine or browser.
http://www.hosppract.com/issues/2000/07/brook.htm
reply continued on next post
Thre really is no advantage to doing a blind ESI unless your pregant and don't want o radiate a baby. Floro is the standard and why docs don't use it is part EGO, part ignorance, and when you have physical medecine docs/PM docs or any ther specialty that hasn't done hundreds of these as part of their daily practice in surgery or the maternity ward it's a huge risk and you end up taking 45 minutes to do a 10 minute procedure. Personally I would find somehwere else to have ESI's done under flouoscopy, you too friar Jen. It's not worth experincving even one spinal headache or catching spinal meningitis.
I explained the gatewy theory, phantom pain and pain imprinting to TK in her post the other day, It's still on page one and is long, here is a shortened version/excerpt from my post.
There is this theory called the gateway theory, It's pretty well accepted and explains things like phantom pain, RSD and many othr chronic pain conditions. YOu mentioned nerve imprinting in your other post and that's a component of the thory. The theory goes ruffly like this. You stub your tow, signals are sent to your brain through a number of gates "nerve branches" to the spine and eventually your brain. Normally the gate opens and closes as the stubbed toe will cause the gate to open and close as it swells up, throbs and becomes more painful, your brain gets the signal and you experience pain. Eventually that swelling stops, and the signals deminish and everything goes back to normal except when you catch that toe on the carpet and sheets and you get a few more burst of electic signals through the nervous sytem, wich open the gates again but they normally close like a door after the signal stops. This is normal/acute pain and how it's interpreted.
If you were to park the car on your foot and not pull it out, the messages to your brain would be continually sent keeping the gates open, basicly retraining the gates to stay open and be more effecient, the signal of pain is constant and millions of pain signals are sent to your brain, IF you leave your foot in there long enough and don''t cause total nerve death, there is a chance that once removed the gates will stay open and continue to send the exact pain signal. With the gates wide open and milions of signals having passed through those nerves, the signal can become engrained in nerve tissue too, making your brain think your foot is still under the tire when it's not. LIke phantom pain
Your brain continues to get the same signal and it's response is to dump endorphins continously and you start having dramatic changes in brain chemistry and the perceptin of pain. Please read Dr brookoffs artcile, It explains the difference between chronic pain and acute pain on the most basic levels involving chemical changes, changes in neurotransmitters,The part of the brain interpreting pain, creation of new bio chemicals that actualy cause more pain due to the neuro inlamatory response from these new chemicals or excess chemicals now being constantly produced.
Read this now. Copy, and cut and paste the addy into your search engine or browser.
http://www.hosppract.com/issues/2000/07/brook.htm
reply continued on next post
Shoreline
05-22-2005, 09:32 AM
The same can happen if post op pain is not treated and the patient sufffers terribly, or in war often care came very late and eventual ampuation removed the injured leg but didn't stop the nuero chemical process of sendng that signal that your in pain. It's not just chemical changes that occur, but an entirley different part of your bran starts recieving and interpreting those pain signals
So the gates stay open even after the problem is corected, They may never close or you may develop RSD where your entre nervous system starts going nuts and you have pain where you never even had an injury an your brain is prodcung so many neuro toxic agents you develop a shingle like condition that an be seen , can't be touched without extreme pain and although RSD or CRPS is still controversial, you can't argue with what you see in front of you as far as discolerinng, inflamation and the shingle like leasions caused by neurotransmitters that actually cause inflamation of all the nerves in an affected area.
This isn't something unique that just happened to your deb r Jen, Acute pain that isn't treatd orlast for a rpolonged cange eventually becomes chronic and all the changes occue that I mentioned and the article mentioned, The article is a must read and has diagrams of noormal and chronic pain pathways and exlains in detail what the difference is, how it occurs and why it occurs. Ecerone with itractable pain with a problem that can't be fixd will rech this point of completely diffrntesponses to pain that acute pain would cause. With those gates open, you also able to interpret and process mor than one pain genertor. Acue pain s overrridden by te most painfl injury other injures will go un noticed until the owst problem is adressed. Bt CP patints can feel and interpret mor than onepain generator and acutepain focuses on that one big Ouchie that's sending the loudest sugnal to yorur barin.
But everyne with CP goes through these changes, so ymany of us have pain engrained into nerve tissue, have all the negativ consqunces of chronc painhapening and have the ability to percieve mor than one source of pain. The artcile is realy mportant to read, reread and understand for all this to make sense.
Evn though pain has been engraind and our gates stay open and we create thenurtransnittes and transformation that occurs with CP, It doesn't mean it can't be treatd. Thre are sevral methods, starting with anti depressants and anti seizure drugs to reduce substance P and to distrt the pain signal.
The test you had done sound lietrials ofor an implanted intrathecal pump to deliver meds drctly to th sit of pain, but lack of response really shows it's mor f a nerve problem thatay be better suitd for nrve stimiulation. Doa seacrg on nerve stim, there are 3 vbasic types, the spinal cord stim where a specific nerve root is wired to distort the pain signal, It's a much more adbvanced method of TENS. There is also Vega nrve stim which would handle aproblem like pancriatitis and other maladies caused by organ problams that use the vega neere to transmit the pain signal. The Veag nerve runs down through the toracic cavity and why heart attacks and reflux can be hard to distnguish alone via sympyoms, they both send the signal op the vag nerve and our grain doe's knowq if it's your hard, stmoach or pancreas. Th implant a device like a pacemaker and rap a lead around the Vga nerve and ou have the ability to contol the strnght, duration and amplitude of the elctrical signa l your using to drown out apain carrid by the veaga nerve. The thrid stim unit is s the same acemaker but leads are implanted in your brain and while your awake tthey test diffeent sites to drown out the pain and stop the formayion of the chemicals assciated with CP.
Brain surgery to implant this device has it's own set of risks, the brain has no feeling itself do being awake is neccesary to report changes and crect lead placement. That's abut the most radical method of dealing with intractable pain that won't repond to any other method of pain relief.
But imprinting can be fooled and the gates can be closed with drugs lie Ketamine where they place you in a comma for a few days and this is supsed to reset those gates and your threshold and tolerance to pain.
Th fact you didn't repond well to epidural opiates doesn't suggest an intrathecal morphine pump is the way to go. Yu really ned t reach 50% relief with the pump trials or you may be wasting your time . There is another poster waiting to have her pump removed but she never had a succesful trial. At best one test showed sligt imporvment, that's a long way from 50% in ost eples book and the pump never shuld have beenimplanted without asuccesful trial. That's what they did, a pump trial testing different opiates in the epi space.
As faras the total block, obviously you can't funtion with a block from the nipple line down. could do a TKR after that bolck and you wouldn't ave flinched because evrything was numbd with bupivicaine, marcaine o lidocaine, same stuff they use to numb teeth before an extraction.
I would imagine the next tests would be for tha spinal cord stim, try to isolate what nevr root the pain is traveling through and disrupt th signal wit electral impulses. Nerve pain simply dosn't respond to opiates as well as say somatic ain or incisional pain, Neoro pain is the hardest to treat.
I didn't quite folow all the numbers, was the scond numbe te pain score after the injection, a 5 should represent a 5% reduction in pain if your constantly floating betwen *09 I rarely use 10 because most of the time the pain I experince isn't the worst pain I have ever expereinced.
But ain imprintin is something many CP patients have to dal with along with the changes froma cute to chronic the article explans, please read it and likly the understanding light bulb will go off. :) something doesn't make sense or you don't undertsand, just ask.
Hang in ther, the doc hasn't condemened you to a life of pain, ZZPain imprintin can be dealt with and overcome, the neurochemical changes can be controlled with other meds like baclofin and clonodine, but the testing of meds you went thogh via the epidural space was simply a trial they do for all perspective pump patients. But not getting significant relief means they either need to use much higher doses or you may not be a candidate for the pump but still a candidate for one of the nerve stim techniqes.
Do stay away from unguided needles into your spine, there is just too much risk and if the dc doesn't have a fluro he can send you somewhere that does, It's greed and arrogance for that 1100 hundred dollar ESI that has him taking a chance on your spine.
Simply ask him what the next step is, stronger epi meds/doses or an SCS stim trial of the nerve roots. But they need to be able to isolate what nerve root is involved for an SCS to be succesful. Again the goal is 50% reduction in pain, Pumps and stims aren't cure alls, just one of many tools.
Goodluck and let me know what you thought of the article.
Take care, Dave
PS also checkout TKs thread regarding surgery not an option. There must have been a PM conference somwhere that suddenly all these docs are using the corect terms and explainng the gateway theory and nerve memeory and engraining all in one week. ;)
So the gates stay open even after the problem is corected, They may never close or you may develop RSD where your entre nervous system starts going nuts and you have pain where you never even had an injury an your brain is prodcung so many neuro toxic agents you develop a shingle like condition that an be seen , can't be touched without extreme pain and although RSD or CRPS is still controversial, you can't argue with what you see in front of you as far as discolerinng, inflamation and the shingle like leasions caused by neurotransmitters that actually cause inflamation of all the nerves in an affected area.
This isn't something unique that just happened to your deb r Jen, Acute pain that isn't treatd orlast for a rpolonged cange eventually becomes chronic and all the changes occue that I mentioned and the article mentioned, The article is a must read and has diagrams of noormal and chronic pain pathways and exlains in detail what the difference is, how it occurs and why it occurs. Ecerone with itractable pain with a problem that can't be fixd will rech this point of completely diffrntesponses to pain that acute pain would cause. With those gates open, you also able to interpret and process mor than one pain genertor. Acue pain s overrridden by te most painfl injury other injures will go un noticed until the owst problem is adressed. Bt CP patints can feel and interpret mor than onepain generator and acutepain focuses on that one big Ouchie that's sending the loudest sugnal to yorur barin.
But everyne with CP goes through these changes, so ymany of us have pain engrained into nerve tissue, have all the negativ consqunces of chronc painhapening and have the ability to percieve mor than one source of pain. The artcile is realy mportant to read, reread and understand for all this to make sense.
Evn though pain has been engraind and our gates stay open and we create thenurtransnittes and transformation that occurs with CP, It doesn't mean it can't be treatd. Thre are sevral methods, starting with anti depressants and anti seizure drugs to reduce substance P and to distrt the pain signal.
The test you had done sound lietrials ofor an implanted intrathecal pump to deliver meds drctly to th sit of pain, but lack of response really shows it's mor f a nerve problem thatay be better suitd for nrve stimiulation. Doa seacrg on nerve stim, there are 3 vbasic types, the spinal cord stim where a specific nerve root is wired to distort the pain signal, It's a much more adbvanced method of TENS. There is also Vega nrve stim which would handle aproblem like pancriatitis and other maladies caused by organ problams that use the vega neere to transmit the pain signal. The Veag nerve runs down through the toracic cavity and why heart attacks and reflux can be hard to distnguish alone via sympyoms, they both send the signal op the vag nerve and our grain doe's knowq if it's your hard, stmoach or pancreas. Th implant a device like a pacemaker and rap a lead around the Vga nerve and ou have the ability to contol the strnght, duration and amplitude of the elctrical signa l your using to drown out apain carrid by the veaga nerve. The thrid stim unit is s the same acemaker but leads are implanted in your brain and while your awake tthey test diffeent sites to drown out the pain and stop the formayion of the chemicals assciated with CP.
Brain surgery to implant this device has it's own set of risks, the brain has no feeling itself do being awake is neccesary to report changes and crect lead placement. That's abut the most radical method of dealing with intractable pain that won't repond to any other method of pain relief.
But imprinting can be fooled and the gates can be closed with drugs lie Ketamine where they place you in a comma for a few days and this is supsed to reset those gates and your threshold and tolerance to pain.
Th fact you didn't repond well to epidural opiates doesn't suggest an intrathecal morphine pump is the way to go. Yu really ned t reach 50% relief with the pump trials or you may be wasting your time . There is another poster waiting to have her pump removed but she never had a succesful trial. At best one test showed sligt imporvment, that's a long way from 50% in ost eples book and the pump never shuld have beenimplanted without asuccesful trial. That's what they did, a pump trial testing different opiates in the epi space.
As faras the total block, obviously you can't funtion with a block from the nipple line down. could do a TKR after that bolck and you wouldn't ave flinched because evrything was numbd with bupivicaine, marcaine o lidocaine, same stuff they use to numb teeth before an extraction.
I would imagine the next tests would be for tha spinal cord stim, try to isolate what nevr root the pain is traveling through and disrupt th signal wit electral impulses. Nerve pain simply dosn't respond to opiates as well as say somatic ain or incisional pain, Neoro pain is the hardest to treat.
I didn't quite folow all the numbers, was the scond numbe te pain score after the injection, a 5 should represent a 5% reduction in pain if your constantly floating betwen *09 I rarely use 10 because most of the time the pain I experince isn't the worst pain I have ever expereinced.
But ain imprintin is something many CP patients have to dal with along with the changes froma cute to chronic the article explans, please read it and likly the understanding light bulb will go off. :) something doesn't make sense or you don't undertsand, just ask.
Hang in ther, the doc hasn't condemened you to a life of pain, ZZPain imprintin can be dealt with and overcome, the neurochemical changes can be controlled with other meds like baclofin and clonodine, but the testing of meds you went thogh via the epidural space was simply a trial they do for all perspective pump patients. But not getting significant relief means they either need to use much higher doses or you may not be a candidate for the pump but still a candidate for one of the nerve stim techniqes.
Do stay away from unguided needles into your spine, there is just too much risk and if the dc doesn't have a fluro he can send you somewhere that does, It's greed and arrogance for that 1100 hundred dollar ESI that has him taking a chance on your spine.
Simply ask him what the next step is, stronger epi meds/doses or an SCS stim trial of the nerve roots. But they need to be able to isolate what nerve root is involved for an SCS to be succesful. Again the goal is 50% reduction in pain, Pumps and stims aren't cure alls, just one of many tools.
Goodluck and let me know what you thought of the article.
Take care, Dave
PS also checkout TKs thread regarding surgery not an option. There must have been a PM conference somwhere that suddenly all these docs are using the corect terms and explainng the gateway theory and nerve memeory and engraining all in one week. ;)
Torley
05-22-2005, 08:19 PM
Dave I Have been suffering pain requiring morphine an dsvredol for 6 years, I have had visits in hospital where it has been weeks at a time on fentanyl and the only way I got out was when they put in epidurals with fentanyl andf ketamine, they allowed me to get on top of the pain
I have had Multiple surgeries starting with a laproscopic cholyscectomy, they found small gall stones but then my pain got worse, I couldn’t eat lie down pain went up . they then did 2 ERCP’s with spincteromtoies my pain after that went to a 10 and I was there for 4 weeks in severe pain on fentanyl. I only got out after they also did a laparotomy with a feeding tube
I have had the epidural more then once and feeding tubes. Due to the pain my speclaislit used w working diagnosis of Chornic Pancreatitis caused by unknown causes , but I have never had a definitive test to prove that an dits been 6 years.
I have suffered pain ever since
The other day they put in a epidural trial , they had perveiously done trials of drugs via IV which had no response on me
I Have explained what my tests were more below.
Dave they injected drugs, , saline or whatever through the epidural to test effects below is what I felt re pain score a
well test 1 I reckon was saline I started at pain score of 5 an dno change in pain score happenedno change
test 2 no change stayed at pain score of 4
test 3 Pin was worse on injection went up to a score of 6 points, with sharp pain felt in right nabdomen then down to 5 then down to 4 then up to 5
test 4 pain 5 pain to left and no change
test 6 well I was over the moon took 4 hours for the block to work off. on test 5 though was pain free/ totally numb breast to below navel and arms for 4 hours and no ****ing pain eg 0/10
Dave
you said that pain imprinting can be overcome with things like Baclofen. What is that ?
I also take clonidine, nortrtytiline, for pain as well as voltaren and panadeine.
I didn’t quite understand what you meant by the below, and it may apply to the tests above on some of the inectiosn above they only slightly decresed my pain, and some increased. What would they be to increase?
, ZZPain imprintin can be dealt with and overcome, the neurochemical changes can be controlled with other meds like baclofin and clonodine,
I also need to point out that due to the pain I have suffered in the first year they severed my splanchnic nerves via a Thorascopic splancnicnetomy.
My pain didn’t decrease, I am not sure if it stopped increasing it as I cant tell, 2 weeks ago this same pain doc did a block and he said that I do nto have pain from my pancreas or that region as his test showed that. My question to him has been and still is. Why is my pain worse when I eat, lie down and worse at night? Why does it sometimes get to the point where I have to be admitted to hospital for it? They also 3 years ago admitted me due to severed constipation, they gave me 2 drinks of pic prep to cleam me out, what happened was that I then eneded up in such severe pain that I was on a PCA fentany; and letamien pain pump for 6 weeks. They inserted a feeding tube and I was there in terrible pain until they put in the epidural which after 1 week I was able to get off all the fentanyl and bring my pain back down. I still don’t know what eating caused me pain and why the epidurals work
I thank you soo much for your help, I am in New Zealand and have been this way for 6 years being passed from specialist to specialist.
My other main question is . is this nerve damage likely to be due to the operations or treatment injury from the initial surgeries? And is it likely I could prove it
You are awesome, hugs
Debs
PS what is an ESI? I am doing a test this fridya again not sure if its a block he sai dit was hard to do on my back as its so bony???? is that common and that he may use a fluoroscope
I have had Multiple surgeries starting with a laproscopic cholyscectomy, they found small gall stones but then my pain got worse, I couldn’t eat lie down pain went up . they then did 2 ERCP’s with spincteromtoies my pain after that went to a 10 and I was there for 4 weeks in severe pain on fentanyl. I only got out after they also did a laparotomy with a feeding tube
I have had the epidural more then once and feeding tubes. Due to the pain my speclaislit used w working diagnosis of Chornic Pancreatitis caused by unknown causes , but I have never had a definitive test to prove that an dits been 6 years.
I have suffered pain ever since
The other day they put in a epidural trial , they had perveiously done trials of drugs via IV which had no response on me
I Have explained what my tests were more below.
Dave they injected drugs, , saline or whatever through the epidural to test effects below is what I felt re pain score a
well test 1 I reckon was saline I started at pain score of 5 an dno change in pain score happenedno change
test 2 no change stayed at pain score of 4
test 3 Pin was worse on injection went up to a score of 6 points, with sharp pain felt in right nabdomen then down to 5 then down to 4 then up to 5
test 4 pain 5 pain to left and no change
test 6 well I was over the moon took 4 hours for the block to work off. on test 5 though was pain free/ totally numb breast to below navel and arms for 4 hours and no ****ing pain eg 0/10
Dave
you said that pain imprinting can be overcome with things like Baclofen. What is that ?
I also take clonidine, nortrtytiline, for pain as well as voltaren and panadeine.
I didn’t quite understand what you meant by the below, and it may apply to the tests above on some of the inectiosn above they only slightly decresed my pain, and some increased. What would they be to increase?
, ZZPain imprintin can be dealt with and overcome, the neurochemical changes can be controlled with other meds like baclofin and clonodine,
I also need to point out that due to the pain I have suffered in the first year they severed my splanchnic nerves via a Thorascopic splancnicnetomy.
My pain didn’t decrease, I am not sure if it stopped increasing it as I cant tell, 2 weeks ago this same pain doc did a block and he said that I do nto have pain from my pancreas or that region as his test showed that. My question to him has been and still is. Why is my pain worse when I eat, lie down and worse at night? Why does it sometimes get to the point where I have to be admitted to hospital for it? They also 3 years ago admitted me due to severed constipation, they gave me 2 drinks of pic prep to cleam me out, what happened was that I then eneded up in such severe pain that I was on a PCA fentany; and letamien pain pump for 6 weeks. They inserted a feeding tube and I was there in terrible pain until they put in the epidural which after 1 week I was able to get off all the fentanyl and bring my pain back down. I still don’t know what eating caused me pain and why the epidurals work
I thank you soo much for your help, I am in New Zealand and have been this way for 6 years being passed from specialist to specialist.
My other main question is . is this nerve damage likely to be due to the operations or treatment injury from the initial surgeries? And is it likely I could prove it
You are awesome, hugs
Debs
PS what is an ESI? I am doing a test this fridya again not sure if its a block he sai dit was hard to do on my back as its so bony???? is that common and that he may use a fluoroscope
Shoreline
05-23-2005, 09:00 AM
Hey Debs, An ESI is an epidurl steroid injection, Used to reduce inflamaton around the nerve roots. A total block like they did at the end relieved all your pain, they pump numbing agents into the epidural space and it simply numbs everything down, just like they do for child birth and surgery on your lower extemeties. They relplaced my moms knee using an epidural block and mild sedation, the numbing agents totally numb the nerves and nothing is felt or transmitted. If they can block the pain of sawing your femor off to replace with an articical knee it will pretty much block any pain from the site of the epidural down.
It's like when they do a block in the back of your jaw and it causes you to go numb from where they blocked you to the tip of your nose and tip of your chin, They could yank every tooth and you wouldn't feel pain. So relief through a total nerve block isn't a surprise if they can replace knees, reconstruct ankles after doing an epidural block in the lumbar area. It also makes child birth mcuch less traumatic when you can't feel the severe pain of teraing and bones spreading. My wife actually broke ger ankle during child birth, we all heard the snap as she was pulling on one and I was on the other side, but due to the block she felt nothing at the time.
Unfortunatly you can't live with a continous block. You wouldn't be able to walk and you wouldn't haven't control of your bowels or bladder. Blocking nerves isn't anything new, they ave been doing nerve blocks for procedures for as long as they have used novacaine or marcaine in dentistry and have done epidurals on women during child birth. With info gathered from the last block thay can at least determine the pain is real, you didn't respond to blind/placebo injections but did respond when they used the actual numbing agents. Your response to pain meds is hard to gage becuase it looks like you under rate your pain. We use a 1-10 scale in the US, and if you went to the ER and said you pain was a 5 , you might get some Motrin and sent on your way, but when a 5 requirs a Ketamine coma and a fentanyl drip, that number doesn't jive with the amount of pain your reporting. Perhaps you guys use a
1-5 scale down under and 5 is the worst you can report, that would exlpain the desperation of living with 5 pain.
I know we don't want to sem like we are exagerating pain and you don't want to claim 10 pain if it's not the worst pain you have experienced, but reportng 5 pain woudn't likely get you the treatment you have been getting or someone even considering a pump implant with what the US idea of 5 pain is. 5 pain doesn't send you to the ER and is managable with OTC meds or milder short acting opiates,
Flouro is the absolute standard of care for spinal injections, particluarly when It's not an anesthesiologist dong the Injection. The thoracic area is boney on everyone, that's where ribs attach, but with flouro that small gap needed to insert a needle can be found without going through what seems like a bone biopsy from catching bone everytime they insert the neeedle. That's not common and shouldn't happen, using flouroscopy would prevent it. To schedule another without flouro is even more rediclous after your last experience.But if that's the standard in in Nw zealand, you may have to do some shopping or addiment insisting that your not going to let him dig around your spine untill he feels like it's in the right spot.
I'm guessing you didn't read or couldn't find the article. Use your IE browser and cut and paste the addy in, It's almost 20K characters with illustrations. I can cut and paste pieces of the article but the illustartions certainly help understand the gateway theory and the huge difference between the way your body responds to chonic pain Vs acute pain and that's what your trying to understand.
Excerpt from article you must read.
http://www.hosppract.com/issues/2000/07/brook.htm
Chronic Pain Pathways
Chronic pain is not just a prolonged version of acute pain. As pain signals are repeatedly generated, neural pathways undergo physiochemical changes that make them hypersensitive to the pain signals and resistant to antinociceptive input. In a very real sense, the signals can become embedded in the spinal cord, like a painful memory. The analogy to memory is especially fitting since the generation of hypersensitivity in the spinal cord and memory in the brain may share common chemical pathways.
Activation of NMDA Receptors. The main neurotransmitter used by nociceptors synapsing with the dorsal horn of the spinal cord is glutamate, a versatile molecule that can bind to several different classes of receptors. Those most involved in the sensation of acute pain, AMPA (alpha-amino-3-hydroxy-5-methyl-isoxazole-4-propionic-acid) receptors, are always exposed on afferent nerve terminals. In contrast, those most involved in the sensation of chronic pain, NMDA (N-methyl-D-aspartate) receptors, are not functional unless there has been a persistent or large-scale release of glutamate. Repeated activation of AMPA receptors dislodges magnesium ions that act like stoppers in transmembrane sodium and calcium channels of the NMDA receptor complex. The conformational change in the neuronal membrane that makes these receptors susceptible to stimulation is the first step in central hypersensitization (Figure 3) and marks the transition from acute to chronic pain.
Activation of NMDA receptors can also cause neural cells to sprout new connective endings. This neural remodeling can add new dimensions to old sensations. The emotional component of pain may be increased, for example, if the new connections channel more of the pain signal to the reticular activating system of the brain. When that occurs, the signal's pathway into the cerebral cortex is more splayed and the pain signal more diffuse and difficult to localize.
Neural remodeling may also precipitate the destruction and loss of cells. Some of the brain damage that occurs during strokes is believed to be caused by the torrents of glutamate released from injured presynaptic cells, which overstimulate NMDA receptors on adjacent postsynaptic cells and effectively burn them out. The same phenomenon may occur in parts of the spinal cord receiving persistent pain signals. There is also evidence that NMDA receptor activation can stimulate normal apoptotic mechanisms. Although some of the details have yet to be elucidated, the data obtained thus far suggest that chronic pain is a destructive process that requires timely treatment in order to limit the damage that it causes.
Activation of NK-I Receptors. A further effect of NMDA-receptor activation is that it causes nociceptors to release the peptide neurotransmitter substance P, which binds to neurokinin-1 (NK-1) receptors in the spinal cord. Activation of these particular receptors amplifies the pain signal and also stimulates nerve growth and regeneration. It is thus interesting to note that the one chemical abnormality repeatedly documented in controlled studies of patients with fibromyalgia syndrome is an elevated level of substance P in the spinal fluid.
In animal models of chronic pain, substance P binding to NK-1 receptors induces production of the c-fos oncogene protein, which in many respects can be regarded as a biochemical footprint of chronic pain. The presence of c-fos protein in spinal cord cells is a marker for central hypersensitization. At first, it is detectable in afferent spinal cord cells actively receiving pain signals. With persistence of the pain, the protein spreads to progressively higher levels of the spinal cord until it eventually reaches the thalamus, at which point the pain is virtually untreatable.
This model explains why patients who have had uncontrolled pain for months or years often find that their pain has spread beyond the originally affected organ or dermatome. In these cases, physicians who are not familiar with the concept of neural plasticity are apt to conclude that the pain is psychogenic, because it does not conform to their preconceived map of the nervous system.
continued on next page
It's like when they do a block in the back of your jaw and it causes you to go numb from where they blocked you to the tip of your nose and tip of your chin, They could yank every tooth and you wouldn't feel pain. So relief through a total nerve block isn't a surprise if they can replace knees, reconstruct ankles after doing an epidural block in the lumbar area. It also makes child birth mcuch less traumatic when you can't feel the severe pain of teraing and bones spreading. My wife actually broke ger ankle during child birth, we all heard the snap as she was pulling on one and I was on the other side, but due to the block she felt nothing at the time.
Unfortunatly you can't live with a continous block. You wouldn't be able to walk and you wouldn't haven't control of your bowels or bladder. Blocking nerves isn't anything new, they ave been doing nerve blocks for procedures for as long as they have used novacaine or marcaine in dentistry and have done epidurals on women during child birth. With info gathered from the last block thay can at least determine the pain is real, you didn't respond to blind/placebo injections but did respond when they used the actual numbing agents. Your response to pain meds is hard to gage becuase it looks like you under rate your pain. We use a 1-10 scale in the US, and if you went to the ER and said you pain was a 5 , you might get some Motrin and sent on your way, but when a 5 requirs a Ketamine coma and a fentanyl drip, that number doesn't jive with the amount of pain your reporting. Perhaps you guys use a
1-5 scale down under and 5 is the worst you can report, that would exlpain the desperation of living with 5 pain.
I know we don't want to sem like we are exagerating pain and you don't want to claim 10 pain if it's not the worst pain you have experienced, but reportng 5 pain woudn't likely get you the treatment you have been getting or someone even considering a pump implant with what the US idea of 5 pain is. 5 pain doesn't send you to the ER and is managable with OTC meds or milder short acting opiates,
Flouro is the absolute standard of care for spinal injections, particluarly when It's not an anesthesiologist dong the Injection. The thoracic area is boney on everyone, that's where ribs attach, but with flouro that small gap needed to insert a needle can be found without going through what seems like a bone biopsy from catching bone everytime they insert the neeedle. That's not common and shouldn't happen, using flouroscopy would prevent it. To schedule another without flouro is even more rediclous after your last experience.But if that's the standard in in Nw zealand, you may have to do some shopping or addiment insisting that your not going to let him dig around your spine untill he feels like it's in the right spot.
I'm guessing you didn't read or couldn't find the article. Use your IE browser and cut and paste the addy in, It's almost 20K characters with illustrations. I can cut and paste pieces of the article but the illustartions certainly help understand the gateway theory and the huge difference between the way your body responds to chonic pain Vs acute pain and that's what your trying to understand.
Excerpt from article you must read.
http://www.hosppract.com/issues/2000/07/brook.htm
Chronic Pain Pathways
Chronic pain is not just a prolonged version of acute pain. As pain signals are repeatedly generated, neural pathways undergo physiochemical changes that make them hypersensitive to the pain signals and resistant to antinociceptive input. In a very real sense, the signals can become embedded in the spinal cord, like a painful memory. The analogy to memory is especially fitting since the generation of hypersensitivity in the spinal cord and memory in the brain may share common chemical pathways.
Activation of NMDA Receptors. The main neurotransmitter used by nociceptors synapsing with the dorsal horn of the spinal cord is glutamate, a versatile molecule that can bind to several different classes of receptors. Those most involved in the sensation of acute pain, AMPA (alpha-amino-3-hydroxy-5-methyl-isoxazole-4-propionic-acid) receptors, are always exposed on afferent nerve terminals. In contrast, those most involved in the sensation of chronic pain, NMDA (N-methyl-D-aspartate) receptors, are not functional unless there has been a persistent or large-scale release of glutamate. Repeated activation of AMPA receptors dislodges magnesium ions that act like stoppers in transmembrane sodium and calcium channels of the NMDA receptor complex. The conformational change in the neuronal membrane that makes these receptors susceptible to stimulation is the first step in central hypersensitization (Figure 3) and marks the transition from acute to chronic pain.
Activation of NMDA receptors can also cause neural cells to sprout new connective endings. This neural remodeling can add new dimensions to old sensations. The emotional component of pain may be increased, for example, if the new connections channel more of the pain signal to the reticular activating system of the brain. When that occurs, the signal's pathway into the cerebral cortex is more splayed and the pain signal more diffuse and difficult to localize.
Neural remodeling may also precipitate the destruction and loss of cells. Some of the brain damage that occurs during strokes is believed to be caused by the torrents of glutamate released from injured presynaptic cells, which overstimulate NMDA receptors on adjacent postsynaptic cells and effectively burn them out. The same phenomenon may occur in parts of the spinal cord receiving persistent pain signals. There is also evidence that NMDA receptor activation can stimulate normal apoptotic mechanisms. Although some of the details have yet to be elucidated, the data obtained thus far suggest that chronic pain is a destructive process that requires timely treatment in order to limit the damage that it causes.
Activation of NK-I Receptors. A further effect of NMDA-receptor activation is that it causes nociceptors to release the peptide neurotransmitter substance P, which binds to neurokinin-1 (NK-1) receptors in the spinal cord. Activation of these particular receptors amplifies the pain signal and also stimulates nerve growth and regeneration. It is thus interesting to note that the one chemical abnormality repeatedly documented in controlled studies of patients with fibromyalgia syndrome is an elevated level of substance P in the spinal fluid.
In animal models of chronic pain, substance P binding to NK-1 receptors induces production of the c-fos oncogene protein, which in many respects can be regarded as a biochemical footprint of chronic pain. The presence of c-fos protein in spinal cord cells is a marker for central hypersensitization. At first, it is detectable in afferent spinal cord cells actively receiving pain signals. With persistence of the pain, the protein spreads to progressively higher levels of the spinal cord until it eventually reaches the thalamus, at which point the pain is virtually untreatable.
This model explains why patients who have had uncontrolled pain for months or years often find that their pain has spread beyond the originally affected organ or dermatome. In these cases, physicians who are not familiar with the concept of neural plasticity are apt to conclude that the pain is psychogenic, because it does not conform to their preconceived map of the nervous system.
continued on next page
Torley
05-23-2005, 09:33 AM
Thanks Dave but I missed your last page id didnt attach
I am realy intersted in it as it may answer my questions at the end. I have been reding all tthat information you gave me and reseacrhing it for liks to other sites related , Thanks its a real education to me
If you can look at the questions it would be great
I have always had sharp pain thru my left shoulder blade to my inside left top diaprahgm, pain wosre on eating lying down and at night does this relate to the wind up or is is more vagus nerve related, Thats the bit i am also confused on
Thanks so much Dave it has really helped me an spurred me on
I am also not suree what his lasty test maybe, this friday
if you can post that page you missed and your thoughts on my question sin previou spost I would be forever grateful tanks you are awesome
Debs
I am realy intersted in it as it may answer my questions at the end. I have been reding all tthat information you gave me and reseacrhing it for liks to other sites related , Thanks its a real education to me
If you can look at the questions it would be great
I have always had sharp pain thru my left shoulder blade to my inside left top diaprahgm, pain wosre on eating lying down and at night does this relate to the wind up or is is more vagus nerve related, Thats the bit i am also confused on
Thanks so much Dave it has really helped me an spurred me on
I am also not suree what his lasty test maybe, this friday
if you can post that page you missed and your thoughts on my question sin previou spost I would be forever grateful tanks you are awesome
Debs
Shoreline
05-23-2005, 10:07 AM
More of DR B's article
Afferent Becomes Efferent. Although most of us were taught that neuronal cells transmit signals in only one direction, either towards (afferent) or away (efferent) from the brain, we now know that many neurons can carry signals in both directions. With the prolonged generation of pain signals, a dorsal root reflex can become established. This is a pathologic condition in which afferent cells in the dorsal horn release mediators that cause action potentials to fire antidromically (i.e., backwards down the nociceptors). When this happens, packets of chemicals located at the peripheral terminals of these cells are released. Among these chemicals are nerve growth factor and substance P, which is not only a neurotransmitter but also a potent inflammatory agent. Nerve growth factor increases the excitability of nociceptors. Pain signals from peripheral nerves are thus heightened, and the cycle of chronic pain is continued
Neurogenic Inflammation. The release of substance P and nerve growth factor into the periphery causes a tissue reaction termed neurogenic inflammation. In contrast to the classic inflammatory response to tissue trauma or immune-mediated cell damage, neurogenic inflammation is driven by events in the central nervous system and does not depend on granulocytes or lymphocytes. Substance P causes degranulation of mast cells, and its effects on the vascular endothelium induce the release of bradykinin and production of nitric oxide, a potent vasodilator. Biopsy specimens from neurogenically inflamed tissues--e.g., tendon insertion sites in fibromyalgia, the synovium in certain forms of chronic arthritis, the bladder in interstitial cystitis, or the colon in severe irritable bowel syndrome--typically show vasodilatation, plasma extravasation, abnormal sprouting of peripheral nerve terminals, and an accumulation of mast cells.
Hyperalgesia and Allodynia. Chemosensitive afferent nerves may become so sensitized by persistent pain that a low-intensity stimulus will provoke hyperalgesia. In certain syndromes, the pain signals may also activate the usually quiet mechanosensitive afferent nerves that are present in synovial tissue and all viscus organs. Once activated, even slight movement or minimal deformity of surrounding tissues can generate pain. This phenomenon, allodynia, is common in chronic degenerative arthritis, low back pain, and severe irritable bowel syndrome and interstitial cystitis.
Translating Science into Treatment
The generation of pain signals and consequent neural remodeling and neurogenic inflammation may be slowed or stopped by activating normal antinociceptive pathways at several points. Stimulation of opioid receptors on peripheral nociceptors or postsynaptic neurons in the dorsal horn inhibits the release of glutamate and prevents the transmission of pain signals. This is the basic mode of action of opioid medications.
Drugs that block NMDA receptors can also have important pain-relieving effects. In caring for patients who have illicitly used the potent NMDA receptor-blocker phencyclidine ("angel dust"), I have been repeatedly impressed by how many of them can tolerate the extreme pain of gunshot wounds or fractures. Unfortunately, phencyclidine's psychotomimetic effects make its use as a pain reliever impractical.
With careful use, other NMDA receptor-blockers such as ketamine can undo at least some of the damage done by chronic pain. It is interesting to note that, while nearly all of the powerful pain-relieving opioids are levorotatory, their dextrorotatory isomers are often noncompetitive NMDA receptor-bockers. One example is dextromethorphan, the D-isomer of levorphanol. Another is methadone, which is formulated as a racemic mixture that can both activate opioid receptors and block NMDA receptors. In patients who have become tolerant to opioids, these drugs can often restore sensitivity, even to small doses. Unfortunately, clinical use of these drugs, with the exception of methadone, is currently limited because they not only block NMDA receptors in the spinal cord but also in the brain, where they can reverse learned inhibitions and induce transient psychosis. Current research should soon yield ways of formulating and delivering NMDA receptor-blockers that will ease most chronic pain syndromes without causing such adverse effects.
The finding that enkephalins work by closing N-type calcium channels, which are found only in neural tissue, prompted a search for drugs that would block these channels specifically. One of the compounds isolated, ziconotide, derived from the venom of a fish-hunting sea snail, has shown promising results in clinical studies of patients with intractable opioid-resistant pain.
Gabapentin, an anticonvulsant widely used for treatment of neuropathic pain, also inhibits calcium flux through N-type channels. Despite its name, gabapentin does not appear to have any effect on GABA receptors. However, GABA-agonist medications such as baclofen are among the drugs being investigated for GABA-like pain-relieving effects.
As new findings about the various elements of the antinociceptive system have emerged, a number of other drugs are being reevaluated for analgesic potential. The observation that alpha2-adrenergic receptors are involved in inhibiting pain signals, led to reformulation of the oral hypertensive agent clonidine as a potent intrathecal pain reliever. The demonstration of clonidine's benefits in treating chronic pain syndromes has focused attention on other alpha-adrenergic drugs. Both tizanidine, an antispasmodic agent, and oxymetazoline, a nasal decongestant, are currently being assessed for their utility as pain relievers.
I Hope this helps, but it took me at leat a dozen readings and a medical dictionary to really understand why these meds work and how different chronic pain is from acute pain. Yes chronic pain feals just like prolonged acute pain, but so many chemical changes and the way we interpret pain have changed over time as we experience CP, it makes excepting and looking for an answer other than opiates alone used to treat acute pain easier to understand.
Gabbapentin, clonodine and baclofin wouldn't do much for somone that just broke their leg, but someone with radiclopothy or a neurogeneic CP may benifit greatly from the use of other meds not normally used to treat acute pain.
Ketamine is a potent NMDA receptor blocker and part of the reasoning behind it is to reset some of the normal chemicals that wouldn't be produced in acute pain Vs CP that are potent neuro toxins and neuro inflmatory agents. There is an oral med in the states that has shown promise called Nemanda, It was devloped to treat Alzheimers but is also a potent NMDA receptor blocker and can increase your toleranc to pain, reduce your response to pain, decrease your tolerance to opiates and be particularly helpful with neurgenic pain.
It would help me to understand the pain scale you use, If your using a 1-5 scale it would make sense to use ketamine and consider a pump with a pain score of 5, but usng the US pain scale or the Irandal pain scale, a 5 wouldn't justify implanting a pump or evengoing to the ER, unless your shooting for 0 pain which is hard to reach and even harder to maintain and not a realistic goal for most CP patients.
Using a 1-10 sacle I can drop my resting level of pain to a 5 but once I'm walking and my spine starts crunching and grindng, I shoot back up to the 7-8 range. If I were t shoot for 0 pain or even pain in he 2-3 range I would be a non functinal zombie and the meds would hinder me more than my spine problems. 0 pain would be nice but not a very relistic goal. Even with an IT pump.
I try to reserve rating pain as a 10 for pain so severe I'm on the way to the ER and for pain levels I haven't ever experienced. Once I hit something that was more painful than anything I have ever exerienced, that becomes my new 9 and a 10 becomes the worst pain I can imagine. I've hit a 10 maybe 4 times and unfortunately I only passed out from it once. You would think you would pass out or hope to pass out rather than have to deal with it, but we have an amazing ability to experinece great pain and vice versa, an amazing ability to experience great joy and pleasure.
If there was something you didn't understand, I will try to explain after you read the entire article. ;)
Take care, Dave
Afferent Becomes Efferent. Although most of us were taught that neuronal cells transmit signals in only one direction, either towards (afferent) or away (efferent) from the brain, we now know that many neurons can carry signals in both directions. With the prolonged generation of pain signals, a dorsal root reflex can become established. This is a pathologic condition in which afferent cells in the dorsal horn release mediators that cause action potentials to fire antidromically (i.e., backwards down the nociceptors). When this happens, packets of chemicals located at the peripheral terminals of these cells are released. Among these chemicals are nerve growth factor and substance P, which is not only a neurotransmitter but also a potent inflammatory agent. Nerve growth factor increases the excitability of nociceptors. Pain signals from peripheral nerves are thus heightened, and the cycle of chronic pain is continued
Neurogenic Inflammation. The release of substance P and nerve growth factor into the periphery causes a tissue reaction termed neurogenic inflammation. In contrast to the classic inflammatory response to tissue trauma or immune-mediated cell damage, neurogenic inflammation is driven by events in the central nervous system and does not depend on granulocytes or lymphocytes. Substance P causes degranulation of mast cells, and its effects on the vascular endothelium induce the release of bradykinin and production of nitric oxide, a potent vasodilator. Biopsy specimens from neurogenically inflamed tissues--e.g., tendon insertion sites in fibromyalgia, the synovium in certain forms of chronic arthritis, the bladder in interstitial cystitis, or the colon in severe irritable bowel syndrome--typically show vasodilatation, plasma extravasation, abnormal sprouting of peripheral nerve terminals, and an accumulation of mast cells.
Hyperalgesia and Allodynia. Chemosensitive afferent nerves may become so sensitized by persistent pain that a low-intensity stimulus will provoke hyperalgesia. In certain syndromes, the pain signals may also activate the usually quiet mechanosensitive afferent nerves that are present in synovial tissue and all viscus organs. Once activated, even slight movement or minimal deformity of surrounding tissues can generate pain. This phenomenon, allodynia, is common in chronic degenerative arthritis, low back pain, and severe irritable bowel syndrome and interstitial cystitis.
Translating Science into Treatment
The generation of pain signals and consequent neural remodeling and neurogenic inflammation may be slowed or stopped by activating normal antinociceptive pathways at several points. Stimulation of opioid receptors on peripheral nociceptors or postsynaptic neurons in the dorsal horn inhibits the release of glutamate and prevents the transmission of pain signals. This is the basic mode of action of opioid medications.
Drugs that block NMDA receptors can also have important pain-relieving effects. In caring for patients who have illicitly used the potent NMDA receptor-blocker phencyclidine ("angel dust"), I have been repeatedly impressed by how many of them can tolerate the extreme pain of gunshot wounds or fractures. Unfortunately, phencyclidine's psychotomimetic effects make its use as a pain reliever impractical.
With careful use, other NMDA receptor-blockers such as ketamine can undo at least some of the damage done by chronic pain. It is interesting to note that, while nearly all of the powerful pain-relieving opioids are levorotatory, their dextrorotatory isomers are often noncompetitive NMDA receptor-bockers. One example is dextromethorphan, the D-isomer of levorphanol. Another is methadone, which is formulated as a racemic mixture that can both activate opioid receptors and block NMDA receptors. In patients who have become tolerant to opioids, these drugs can often restore sensitivity, even to small doses. Unfortunately, clinical use of these drugs, with the exception of methadone, is currently limited because they not only block NMDA receptors in the spinal cord but also in the brain, where they can reverse learned inhibitions and induce transient psychosis. Current research should soon yield ways of formulating and delivering NMDA receptor-blockers that will ease most chronic pain syndromes without causing such adverse effects.
The finding that enkephalins work by closing N-type calcium channels, which are found only in neural tissue, prompted a search for drugs that would block these channels specifically. One of the compounds isolated, ziconotide, derived from the venom of a fish-hunting sea snail, has shown promising results in clinical studies of patients with intractable opioid-resistant pain.
Gabapentin, an anticonvulsant widely used for treatment of neuropathic pain, also inhibits calcium flux through N-type channels. Despite its name, gabapentin does not appear to have any effect on GABA receptors. However, GABA-agonist medications such as baclofen are among the drugs being investigated for GABA-like pain-relieving effects.
As new findings about the various elements of the antinociceptive system have emerged, a number of other drugs are being reevaluated for analgesic potential. The observation that alpha2-adrenergic receptors are involved in inhibiting pain signals, led to reformulation of the oral hypertensive agent clonidine as a potent intrathecal pain reliever. The demonstration of clonidine's benefits in treating chronic pain syndromes has focused attention on other alpha-adrenergic drugs. Both tizanidine, an antispasmodic agent, and oxymetazoline, a nasal decongestant, are currently being assessed for their utility as pain relievers.
I Hope this helps, but it took me at leat a dozen readings and a medical dictionary to really understand why these meds work and how different chronic pain is from acute pain. Yes chronic pain feals just like prolonged acute pain, but so many chemical changes and the way we interpret pain have changed over time as we experience CP, it makes excepting and looking for an answer other than opiates alone used to treat acute pain easier to understand.
Gabbapentin, clonodine and baclofin wouldn't do much for somone that just broke their leg, but someone with radiclopothy or a neurogeneic CP may benifit greatly from the use of other meds not normally used to treat acute pain.
Ketamine is a potent NMDA receptor blocker and part of the reasoning behind it is to reset some of the normal chemicals that wouldn't be produced in acute pain Vs CP that are potent neuro toxins and neuro inflmatory agents. There is an oral med in the states that has shown promise called Nemanda, It was devloped to treat Alzheimers but is also a potent NMDA receptor blocker and can increase your toleranc to pain, reduce your response to pain, decrease your tolerance to opiates and be particularly helpful with neurgenic pain.
It would help me to understand the pain scale you use, If your using a 1-5 scale it would make sense to use ketamine and consider a pump with a pain score of 5, but usng the US pain scale or the Irandal pain scale, a 5 wouldn't justify implanting a pump or evengoing to the ER, unless your shooting for 0 pain which is hard to reach and even harder to maintain and not a realistic goal for most CP patients.
Using a 1-10 sacle I can drop my resting level of pain to a 5 but once I'm walking and my spine starts crunching and grindng, I shoot back up to the 7-8 range. If I were t shoot for 0 pain or even pain in he 2-3 range I would be a non functinal zombie and the meds would hinder me more than my spine problems. 0 pain would be nice but not a very relistic goal. Even with an IT pump.
I try to reserve rating pain as a 10 for pain so severe I'm on the way to the ER and for pain levels I haven't ever experienced. Once I hit something that was more painful than anything I have ever exerienced, that becomes my new 9 and a 10 becomes the worst pain I can imagine. I've hit a 10 maybe 4 times and unfortunately I only passed out from it once. You would think you would pass out or hope to pass out rather than have to deal with it, but we have an amazing ability to experinece great pain and vice versa, an amazing ability to experience great joy and pleasure.
If there was something you didn't understand, I will try to explain after you read the entire article. ;)
Take care, Dave
Torley
05-23-2005, 10:50 AM
Dave These tests were doen in the morning when under morphine I take slow release I have less pain eg I use the 1 to 10 scale. At night and these tests are not there I am routinely at an 7 or 8 or 9
So these tests are just what my pain score was then, they are low as I dont get really bad pain in the morning eg and especially if i dont eat. I am on morphine for pain and so it is there as well so I was just assigned from the 1 to 10 scale a rating.
Other tests I have done with him have been on scores of 7 out of 10, where i stopped meds many hours before and I was in so much pain that I couldnt get on top of it and had to take huge doses or morphien to bring it down. So since then in the morning when he does these tests I am not goign to a 7 again as I cant bring the pain down with my current meds and would end up back in hospital hence th elow scores out of 10 beelow.
It would help me to understand the pain scale you use, If your using a 1-5 scale it would make sense to use ketamine and consider a pump with a pain score of 5, but usng the US pain scale or the Irandal pain scale, a 5 wouldn't justify implanting a pump or evengoing to the ER, unless your shooting for 0 pain which is hard to reach and even harder to maintain and not a realistic goal for most CP patients.
you said that pain imprinting can be overcome with things like Baclofen. What is that ?
I also take clonidine, nortrtytiline, for pain as well as voltaren and panadeine.
I didn’t quite understand what you meant by the below, and it may apply to the tests above on some of the inectiosn above they only slightly decresed my pain, and some increased. What would they be to increase?
, ZZPain imprintin can be dealt with and overcome, the neurochemical changes can be controlled with other meds like baclofin and clonodine,
also need to point out that due to the pain I have suffered in the first year they severed my splanchnic nerves via a Thorascopic splancnicnetomy.
My pain didn’t decrease, I am not sure if it stopped increasing it as I cant tell, 2 weeks ago this same pain doc did a block and he said that I do nto have pain from my pancreas or that region as his test showed that. My question to him has been and still is. Why is my pain worse when I eat, lie down and worse at night? Why does it sometimes get to the point where I have to be admitted to hospital for it? They also 3 years ago admitted me due to severed constipation, they gave me 2 drinks of pic prep to cleam me out, what happened was that I then eneded up in such severe pain that I was on a PCA fentany; and letamien pain pump for 6 weeks. They inserted a feeding tube and I was there in terrible pain until they put in the epidural which after 1 week I was able to get off all the fentanyl and bring my pain back down. I still don’t know what eating caused me pain and why the epidurals work
My other main question is . is this nerve damage likely to be due to the operations or treatment injury from the initial surgeries? And is it likely I could prove it
I have had around 5 to 6 10 scores in in hospital wher ei have been on pain pumnps and epidurals at the same time
thanks a lot
Debs
So these tests are just what my pain score was then, they are low as I dont get really bad pain in the morning eg and especially if i dont eat. I am on morphine for pain and so it is there as well so I was just assigned from the 1 to 10 scale a rating.
Other tests I have done with him have been on scores of 7 out of 10, where i stopped meds many hours before and I was in so much pain that I couldnt get on top of it and had to take huge doses or morphien to bring it down. So since then in the morning when he does these tests I am not goign to a 7 again as I cant bring the pain down with my current meds and would end up back in hospital hence th elow scores out of 10 beelow.
It would help me to understand the pain scale you use, If your using a 1-5 scale it would make sense to use ketamine and consider a pump with a pain score of 5, but usng the US pain scale or the Irandal pain scale, a 5 wouldn't justify implanting a pump or evengoing to the ER, unless your shooting for 0 pain which is hard to reach and even harder to maintain and not a realistic goal for most CP patients.
you said that pain imprinting can be overcome with things like Baclofen. What is that ?
I also take clonidine, nortrtytiline, for pain as well as voltaren and panadeine.
I didn’t quite understand what you meant by the below, and it may apply to the tests above on some of the inectiosn above they only slightly decresed my pain, and some increased. What would they be to increase?
, ZZPain imprintin can be dealt with and overcome, the neurochemical changes can be controlled with other meds like baclofin and clonodine,
also need to point out that due to the pain I have suffered in the first year they severed my splanchnic nerves via a Thorascopic splancnicnetomy.
My pain didn’t decrease, I am not sure if it stopped increasing it as I cant tell, 2 weeks ago this same pain doc did a block and he said that I do nto have pain from my pancreas or that region as his test showed that. My question to him has been and still is. Why is my pain worse when I eat, lie down and worse at night? Why does it sometimes get to the point where I have to be admitted to hospital for it? They also 3 years ago admitted me due to severed constipation, they gave me 2 drinks of pic prep to cleam me out, what happened was that I then eneded up in such severe pain that I was on a PCA fentany; and letamien pain pump for 6 weeks. They inserted a feeding tube and I was there in terrible pain until they put in the epidural which after 1 week I was able to get off all the fentanyl and bring my pain back down. I still don’t know what eating caused me pain and why the epidurals work
My other main question is . is this nerve damage likely to be due to the operations or treatment injury from the initial surgeries? And is it likely I could prove it
I have had around 5 to 6 10 scores in in hospital wher ei have been on pain pumnps and epidurals at the same time
thanks a lot
Debs
Shoreline
05-23-2005, 04:28 PM
Hey DEB, I ddidn't ntice we must have been on line at the same time. Iasked about your number system because I didn't know if a 5 was the top in new zealand or what the previous number was. Like x sinjection dropped me from a 7 to a 5. It just gives me some perspective as to the reults of the trials My friend in Canada, just across an invisable border uses a 4 number system, 1,2,3 and 4 is the worst pain. So I also needed a point of reference.
Number scales are very subjective too. Using the same 10 point descriptive scale, given the same amount of stimuli, everyone will report a different number, what counts is how it effects you. But the number system is good in percentages, Particularly when doing a trial. The only reason to try multiple drugs , including the placebo would be the Intrathecal pump trial. Meds delivered to the intrathecal space, rather than the epidural. Epidural meds still have to migrate through the dura, so they tend to stay in place, Intrthecal med meds disperse through out the spinal fluid. So a smaller does provides more refief. If you were wondering.
But guesing your doing a Pump trial, whether the doc is being forward about it or is acting like this is some test to see which drug they can give you and not mention it's via IT pump. I can imagine a doc that arrogant thet he wouldn't explain why he's doing what he's doing. There was recently a poster that wanted her pump removed, for various reasons, mainly not working . Her doc did 2 injection trials, One was dilaudid, which she had a bad reaction too, then a few weeks later they did a Fentanyl injection. She said it "helped a little."
That's not what I would call or the manufacturer of the pump would call a succesful trial. The goal is to improve pain relief 50% without intolerable side effects. I can see fudging around 40% and hoping to adjust the dose. Docs can compensate knowing if you have meds in you or your inpattient and cut off frm meds. A "little better" would warrnet havng a Tuna can implanted and going through the process of titrating and adjustng the pump. It took 6 months because they tend to go slow because .3 mgs more per day is a big increase in dilaudid delivered IT.
The final nerve block?, I'm not sure why, I could guess to see if you might do better with a Vega nerve stim if doing an epi block didn't help. I really hope your doc is more forthcoming with info than it seems. Like he tells you what they are doing and why?
As far as pain scales, aside from wanting 50% for a pump trial to know it can be adjusted to a reasonable level whether you have meds in you or not the number system is flawed because it's so sbjective. You need to exlain what a number means to the doc. Something he can relate too. Unable to do this, have to do this and it relieves this much pain. I pretty much use a 5 as 50% relief. That's my scale though. I can function at a 5, I'll be gaureded, have limits, hurt like heck afterwards and tomorrow,maybe the next but I can deal with a 5 or 50% relief. Less relief becomes harder to deal with and you become and feel more desperate. I can't work at a 5 though, I can't stand more than 30 -45minutes, sit more than 60 and have to lay down to decomrpess my spine. I had to lay on the bleachers the other night at softball practice for my daughter. MY #5 may be very different from others. But my doc knows what my 5 is, and that's the mportant thng.
Hey Deb, Finding out where nerve damage came from can be very difficult, Surgeons aren't likely to tell you when you wake they accidentally clipped a nerve they shouldn't have, It just falls under the risks of having surgery. I have very distinct patterns of numbness in my upper thighs, You can look at a dermatome chart/map and see the nerves come from L2 that would cause the damage but how it occurred is still questionable. I woke up with this numbness from the last surgery and the doc said it was likely from positioning during the 11 hour surgery. It’s a possible answer as I know a police officer that was blinded during back surgery because the anesthesiologist didn't have his head positioned correctly and this damaged his optic nerves. His problem was clear cut and the damage was permanent, measurable and extensive, he won several million in a mal practice suite. But it's been 6 years since surgery and he suggested that the numbness from positioning would come back, I'm still waiting. :rolleyes: But I wouldn’t have a suite because of the lack of measurable damage, how has it negatively effected me and even if it caused pain, what dollar amount do you put on leg pain when you went into surgery with leg pain.
Most likely my damage was done at L2 during surgery, But this was my third surgery and at the 4 hour mark he hadn't even reached my spine because I had so much car tissue. It took that long to dissect scar tissue trying not to damage nerves. I really don't blame the doc for the poor outcome, but the way I was treated after surgery was unforgivable and the BS and flat out lies he told me as not to admit that his surgery couldn't have possibly failed I don't forgive or forget. I don't know why admitting surgery didn't work is so hard for docs, statistically surgery isn't going to work on everyone, but according to him I was the only patient out of 1300 fusion’s that had the complaints I did. Please...
MY pain was poorly managed after surgery, poorly managed for 9 months while I was bed ridden and it was easier to call me an addict than to admit he really didn't know why things turned out the way they did. He wouldn't support my clam for disability because I hadn't completed all the PT he ordered. It wasn't my call, my insurance cut me off and I did everything I could to appeal the decision. I went as far as calling my congressman. When they would allow additional visits it was ridiculous, after 3 months of fighting for continued PT, they would authorize 2 or 3 more visits. Like that would do the trick and then cut me off again. The surgeon said I hadn't followed his instructions and didn’t comple all the PT he prescribed. I guess I was just supposed to shake the money tree and collect 500 a week from the ground to pay for the PT my insurance wouldn't. Looking back all the PT in the world wouldn't have made me fuse, wouldn't have prevented hardware from pulling out of my sacrum or breaking. It just got ridiculous and I haven't been back since, what's the point, he's not going to give me a refund. LOL I'm still in his books as a success because the Xrays he took at 6 months post op looked good.
Sorry to ramble off about me. Baclofin is a drug used for spasticity that's been used in IT pumps for years to treat MS. Oral Baclofin is not nearly as effective as Intrathecal baclofin. You can take 1000 mgs of oral Baclofin and not get the same benefit that 1 microgram of intrathecal Baclofin per day provides.
The more they learn about neuro biology and the micro anatomy of nerve tissue the more treatments are coming available for chronic pain. One of the biggest steps in understanding pain was learning how someone on PCP can take 3 bullets to the chest and have a nightstick taken to the head and still keep coming. This lead to the discovery of the NMDA receptor and most of the non opiate treatments for pain that target specific neuro receptors and channels found only in nerve tissue, mainly the spinal cord and direct access to the brain through spinal fluid. The more they studied the more they found as far as neurotransmitters and the function of each bio chemical and their effect on the nervous system
Oral meds although systemic, meaning they run through your entire body don’t have the concentration to effect these specific receptors, channels and transmitters found only in nerve tissue. This is why Intrathecal meds are so much more potent. The number of opiate receptors, channels and neurotransmitters are exponentially greater than you would find anywhere else in the body or could reach/target with an oral med or even an IV med. I was taking 600 mgs of LA oral morphine a day at one point, before switching to methadone and that didn’t come close to the relief that 12 mgs of Intrathecal morphine provided. I couldn’t stand anymore constipation so we started adding baclofen which seemed to work as well as any increase I had been given in IT morphine.
Sorry about the flood of info.
I really don't know much about VEGA nerve stim but could reseach it. Medtronics makes one. Did you get any relief from having the splanchnic nerves cut? How long ago was it done, how long was relief and how much relief. Thos nervs will try t grow back, somthimes they recnnect, somtimes the find something else to connect too. I don't know why position or eating makes a diffeence, unless you have adhesions atached to where a nerve reconnected? It's a maybe? Still alotof maybes. Was he doing a pump trial? I don't know why they would simply run different things into the epi space without a reason?
Talk more later, this waslong enoiugh.LOL
Dave
Number scales are very subjective too. Using the same 10 point descriptive scale, given the same amount of stimuli, everyone will report a different number, what counts is how it effects you. But the number system is good in percentages, Particularly when doing a trial. The only reason to try multiple drugs , including the placebo would be the Intrathecal pump trial. Meds delivered to the intrathecal space, rather than the epidural. Epidural meds still have to migrate through the dura, so they tend to stay in place, Intrthecal med meds disperse through out the spinal fluid. So a smaller does provides more refief. If you were wondering.
But guesing your doing a Pump trial, whether the doc is being forward about it or is acting like this is some test to see which drug they can give you and not mention it's via IT pump. I can imagine a doc that arrogant thet he wouldn't explain why he's doing what he's doing. There was recently a poster that wanted her pump removed, for various reasons, mainly not working . Her doc did 2 injection trials, One was dilaudid, which she had a bad reaction too, then a few weeks later they did a Fentanyl injection. She said it "helped a little."
That's not what I would call or the manufacturer of the pump would call a succesful trial. The goal is to improve pain relief 50% without intolerable side effects. I can see fudging around 40% and hoping to adjust the dose. Docs can compensate knowing if you have meds in you or your inpattient and cut off frm meds. A "little better" would warrnet havng a Tuna can implanted and going through the process of titrating and adjustng the pump. It took 6 months because they tend to go slow because .3 mgs more per day is a big increase in dilaudid delivered IT.
The final nerve block?, I'm not sure why, I could guess to see if you might do better with a Vega nerve stim if doing an epi block didn't help. I really hope your doc is more forthcoming with info than it seems. Like he tells you what they are doing and why?
As far as pain scales, aside from wanting 50% for a pump trial to know it can be adjusted to a reasonable level whether you have meds in you or not the number system is flawed because it's so sbjective. You need to exlain what a number means to the doc. Something he can relate too. Unable to do this, have to do this and it relieves this much pain. I pretty much use a 5 as 50% relief. That's my scale though. I can function at a 5, I'll be gaureded, have limits, hurt like heck afterwards and tomorrow,maybe the next but I can deal with a 5 or 50% relief. Less relief becomes harder to deal with and you become and feel more desperate. I can't work at a 5 though, I can't stand more than 30 -45minutes, sit more than 60 and have to lay down to decomrpess my spine. I had to lay on the bleachers the other night at softball practice for my daughter. MY #5 may be very different from others. But my doc knows what my 5 is, and that's the mportant thng.
Hey Deb, Finding out where nerve damage came from can be very difficult, Surgeons aren't likely to tell you when you wake they accidentally clipped a nerve they shouldn't have, It just falls under the risks of having surgery. I have very distinct patterns of numbness in my upper thighs, You can look at a dermatome chart/map and see the nerves come from L2 that would cause the damage but how it occurred is still questionable. I woke up with this numbness from the last surgery and the doc said it was likely from positioning during the 11 hour surgery. It’s a possible answer as I know a police officer that was blinded during back surgery because the anesthesiologist didn't have his head positioned correctly and this damaged his optic nerves. His problem was clear cut and the damage was permanent, measurable and extensive, he won several million in a mal practice suite. But it's been 6 years since surgery and he suggested that the numbness from positioning would come back, I'm still waiting. :rolleyes: But I wouldn’t have a suite because of the lack of measurable damage, how has it negatively effected me and even if it caused pain, what dollar amount do you put on leg pain when you went into surgery with leg pain.
Most likely my damage was done at L2 during surgery, But this was my third surgery and at the 4 hour mark he hadn't even reached my spine because I had so much car tissue. It took that long to dissect scar tissue trying not to damage nerves. I really don't blame the doc for the poor outcome, but the way I was treated after surgery was unforgivable and the BS and flat out lies he told me as not to admit that his surgery couldn't have possibly failed I don't forgive or forget. I don't know why admitting surgery didn't work is so hard for docs, statistically surgery isn't going to work on everyone, but according to him I was the only patient out of 1300 fusion’s that had the complaints I did. Please...
MY pain was poorly managed after surgery, poorly managed for 9 months while I was bed ridden and it was easier to call me an addict than to admit he really didn't know why things turned out the way they did. He wouldn't support my clam for disability because I hadn't completed all the PT he ordered. It wasn't my call, my insurance cut me off and I did everything I could to appeal the decision. I went as far as calling my congressman. When they would allow additional visits it was ridiculous, after 3 months of fighting for continued PT, they would authorize 2 or 3 more visits. Like that would do the trick and then cut me off again. The surgeon said I hadn't followed his instructions and didn’t comple all the PT he prescribed. I guess I was just supposed to shake the money tree and collect 500 a week from the ground to pay for the PT my insurance wouldn't. Looking back all the PT in the world wouldn't have made me fuse, wouldn't have prevented hardware from pulling out of my sacrum or breaking. It just got ridiculous and I haven't been back since, what's the point, he's not going to give me a refund. LOL I'm still in his books as a success because the Xrays he took at 6 months post op looked good.
Sorry to ramble off about me. Baclofin is a drug used for spasticity that's been used in IT pumps for years to treat MS. Oral Baclofin is not nearly as effective as Intrathecal baclofin. You can take 1000 mgs of oral Baclofin and not get the same benefit that 1 microgram of intrathecal Baclofin per day provides.
The more they learn about neuro biology and the micro anatomy of nerve tissue the more treatments are coming available for chronic pain. One of the biggest steps in understanding pain was learning how someone on PCP can take 3 bullets to the chest and have a nightstick taken to the head and still keep coming. This lead to the discovery of the NMDA receptor and most of the non opiate treatments for pain that target specific neuro receptors and channels found only in nerve tissue, mainly the spinal cord and direct access to the brain through spinal fluid. The more they studied the more they found as far as neurotransmitters and the function of each bio chemical and their effect on the nervous system
Oral meds although systemic, meaning they run through your entire body don’t have the concentration to effect these specific receptors, channels and transmitters found only in nerve tissue. This is why Intrathecal meds are so much more potent. The number of opiate receptors, channels and neurotransmitters are exponentially greater than you would find anywhere else in the body or could reach/target with an oral med or even an IV med. I was taking 600 mgs of LA oral morphine a day at one point, before switching to methadone and that didn’t come close to the relief that 12 mgs of Intrathecal morphine provided. I couldn’t stand anymore constipation so we started adding baclofen which seemed to work as well as any increase I had been given in IT morphine.
Sorry about the flood of info.
I really don't know much about VEGA nerve stim but could reseach it. Medtronics makes one. Did you get any relief from having the splanchnic nerves cut? How long ago was it done, how long was relief and how much relief. Thos nervs will try t grow back, somthimes they recnnect, somtimes the find something else to connect too. I don't know why position or eating makes a diffeence, unless you have adhesions atached to where a nerve reconnected? It's a maybe? Still alotof maybes. Was he doing a pump trial? I don't know why they would simply run different things into the epi space without a reason?
Talk more later, this waslong enoiugh.LOL
Dave
Torley
05-23-2005, 06:32 PM
Hi Dave
one of my concerns is that I currently take morphine and he has said with one of hisblind drug tests that my pain is morphine resisitant. I was upset with this as it works for me and has worked in large doses via fenatnyl in hospital. I knwo his test may have sai dthis but for whatever reason is does have an effect and my concern is that if he removed that then what do I take for breakthrough?
meds I am currently on
mst 20 mg twice a day
sevredol between 20 mg to at worsk 180 mg a day for breakthrough pain
paxil 1 a day
clonidine 2 a day
somac 2 a day
panadeine up to 8
volataren slow release 150 mg slow realese
nortryptiline 100 mg
ranitidine
colxyl and senna
enemas.... i need up to 9 fleet phosphate and only go then every 3 to 4 days
ducolax slow release for constipation
antioxidants
immovane to sleep 2 a day
I have endured this pain for six years post lap choly surgery and have had multiple surgeries to help fix etc. The pain has never changed and is alwaysin one location through left shoulder blade radiating to the left top of rib cage amd is like a knifes gutting me from inside boring.
Dave the options this doctor has given meare blinded tests where I have no idea what he injects or does. Below is a summary to date of what he has done
I had the first tests yesterday
They ran up an iV through my foot then the dose of whatever is titrated through my foot
The first drug had no effect on my pain and didnt do didnt do anything( I have ben now told it was a placebo)
The second one I couldnt remember much, I sort of came too realised I had trouble breathing. They have all monitor machines on.
I was only at a level of 4 pain as it was in the morning and I hadnt eaten. My pain is always worse through to the end of the day night or after I eat.
Then about 10 hours later it came back. I remember that I felt like I wasnt there, I cant remember being able to keep my eyes open.
I remember like trying to get away from the test and not being able to breathe, I couldnt openmy eyes. I could feel the outside of my skin was all. Blood pressure etc and whatever else went up.
I was wiped out after it. I think the pain went, but I was scared.It was like a fit but I have never had those.
Then i had to take 4 times my normal dose yesterday to get my pain down.
I have no idea what it was, but I was struggling to breathe, but I couldnt see.
The second tes again was via IV through my foot where they injected drugs that I didnt know what they were.
drug one I felt out of it and it dint reduce my pain
Same on drug 4. No difference in my pain only marginal 10 percent difference
The third test was a nerve block
This procedure was horrendous, They started with an IV which again they put in my foot as they cant get as vein anywhere else.
I had this block via an Xray machone while they guided in 2 needles one either side of my lower spine, I heard T12 and think that may be it isnear there.
They then after inserting the needle on each side poked and proded so that I screamed on the table on the left side, this didnt stop them, the nurse was clutching my arm
he then got the needle at the base of my spine on the right and poked it so that I screamed in pain, I was off the table even though I was lying face down, he proceeded and I just lay there and cried he continued with no offer to stop or help with pain relief.
I have had this procedure done before and I was sedated by a pain specialist anaetshtist,. This guy was also a specialist pain team anesthtist.
he carried on for another 15 minutes, and then asked if my pain which was the normal pain for which I had to reduce meds to get it to be high for this test, was better( I was at a 7 which is high pain). I replied it made no difference and I have no idea as it is a blinded test what it was. The block had no effect eg no decrease in pain.( subsequently I have been notified that thi sblock showed that my pain is not coming from my GI tract)
I have even had my splanchnic nerves cut to try to ease this with no let up. This didnt reduce my pain initially my dose of morphine increased 10 times the normal dose
My pain is worse at night, bad if I eat or even drink water,worse if I lay down. It fluctuates from a 4 to a 8 on average even with morphine.
The options that the pain anesthtist had said were to next try
options he gave me epidural blind tests( which is what he did last week), then maybe a trial catheter and electric shock treament ??
Dave All these tests are blinded eg I dont know what they are an dwhat drugs. Have you seen this before? This doctor is from overseas from europe.
I dont understand why they have to be blinded.
What advise do you have?
I know its a hard one, and I have searched but dound noone that has been subjected to blind pain tests.
there are no pet scans, EUS here in our country
Also are blid trial test done in the USA, he onlty tells me reults after say 2 lots of session. Why would he do it that way and is ita common approach?
Thanks for your help
I really appreciate it, more then I can say
Debs
one of my concerns is that I currently take morphine and he has said with one of hisblind drug tests that my pain is morphine resisitant. I was upset with this as it works for me and has worked in large doses via fenatnyl in hospital. I knwo his test may have sai dthis but for whatever reason is does have an effect and my concern is that if he removed that then what do I take for breakthrough?
meds I am currently on
mst 20 mg twice a day
sevredol between 20 mg to at worsk 180 mg a day for breakthrough pain
paxil 1 a day
clonidine 2 a day
somac 2 a day
panadeine up to 8
volataren slow release 150 mg slow realese
nortryptiline 100 mg
ranitidine
colxyl and senna
enemas.... i need up to 9 fleet phosphate and only go then every 3 to 4 days
ducolax slow release for constipation
antioxidants
immovane to sleep 2 a day
I have endured this pain for six years post lap choly surgery and have had multiple surgeries to help fix etc. The pain has never changed and is alwaysin one location through left shoulder blade radiating to the left top of rib cage amd is like a knifes gutting me from inside boring.
Dave the options this doctor has given meare blinded tests where I have no idea what he injects or does. Below is a summary to date of what he has done
I had the first tests yesterday
They ran up an iV through my foot then the dose of whatever is titrated through my foot
The first drug had no effect on my pain and didnt do didnt do anything( I have ben now told it was a placebo)
The second one I couldnt remember much, I sort of came too realised I had trouble breathing. They have all monitor machines on.
I was only at a level of 4 pain as it was in the morning and I hadnt eaten. My pain is always worse through to the end of the day night or after I eat.
Then about 10 hours later it came back. I remember that I felt like I wasnt there, I cant remember being able to keep my eyes open.
I remember like trying to get away from the test and not being able to breathe, I couldnt openmy eyes. I could feel the outside of my skin was all. Blood pressure etc and whatever else went up.
I was wiped out after it. I think the pain went, but I was scared.It was like a fit but I have never had those.
Then i had to take 4 times my normal dose yesterday to get my pain down.
I have no idea what it was, but I was struggling to breathe, but I couldnt see.
The second tes again was via IV through my foot where they injected drugs that I didnt know what they were.
drug one I felt out of it and it dint reduce my pain
Same on drug 4. No difference in my pain only marginal 10 percent difference
The third test was a nerve block
This procedure was horrendous, They started with an IV which again they put in my foot as they cant get as vein anywhere else.
I had this block via an Xray machone while they guided in 2 needles one either side of my lower spine, I heard T12 and think that may be it isnear there.
They then after inserting the needle on each side poked and proded so that I screamed on the table on the left side, this didnt stop them, the nurse was clutching my arm
he then got the needle at the base of my spine on the right and poked it so that I screamed in pain, I was off the table even though I was lying face down, he proceeded and I just lay there and cried he continued with no offer to stop or help with pain relief.
I have had this procedure done before and I was sedated by a pain specialist anaetshtist,. This guy was also a specialist pain team anesthtist.
he carried on for another 15 minutes, and then asked if my pain which was the normal pain for which I had to reduce meds to get it to be high for this test, was better( I was at a 7 which is high pain). I replied it made no difference and I have no idea as it is a blinded test what it was. The block had no effect eg no decrease in pain.( subsequently I have been notified that thi sblock showed that my pain is not coming from my GI tract)
I have even had my splanchnic nerves cut to try to ease this with no let up. This didnt reduce my pain initially my dose of morphine increased 10 times the normal dose
My pain is worse at night, bad if I eat or even drink water,worse if I lay down. It fluctuates from a 4 to a 8 on average even with morphine.
The options that the pain anesthtist had said were to next try
options he gave me epidural blind tests( which is what he did last week), then maybe a trial catheter and electric shock treament ??
Dave All these tests are blinded eg I dont know what they are an dwhat drugs. Have you seen this before? This doctor is from overseas from europe.
I dont understand why they have to be blinded.
What advise do you have?
I know its a hard one, and I have searched but dound noone that has been subjected to blind pain tests.
there are no pet scans, EUS here in our country
Also are blid trial test done in the USA, he onlty tells me reults after say 2 lots of session. Why would he do it that way and is ita common approach?
Thanks for your help
I really appreciate it, more then I can say
Debs
Shoreline
05-24-2005, 07:47 AM
Lordy, What a mess. Concluding your morphine resistant from one trial is totaly absurd, particularly when it works orally for BT pain. There is just no way they can give you a dose of anything and know the outcome, he may have given you 2 mgs of IV morphine when you need 10, the same could go for any drug.Your body becomes tolerant to the dangerous respirtory suppresion long before you ever become tolerant to the anelgesic effects, so even if a dose caused too much supression, too much brain fog, it's still likely that you would accomadate to those side effects if you slowly adjusted an oral dose upwards.
I was under the impreson that you were at the end of the line and they just couldn't figure out what to do with you, That's not true. Or is it in our country?
Pannadeine for intractable pain, what a joke. Each tablet only contains 8 mgs of codeine and 500 mgs of tylenol or whatever ya'll call it down under. Codeine is weak and extremly constipating and very harsh on your Gi system. How could you possibly bennefit from such a small dose ? The price your paying as far as constipation makes it totally worthless. Your taking the max daily dose of Tylenol which will damage your liver with prolonged use. If you take Tylenol daily you shouldn't exceed 2000mgs, wich would be 4 Pannadeine a day.
IN the US, Tylenol and codeine tabs come in 15mg, 30, 60 mg strength and only use 325 of tylenol in each pill and is still considerd the bottom rung on the pain med ladder, the weakest meds with some harsh GI side effects.
Your morphine use is limited, not high doses at all and only short acting. The other meds yuor on are pretty iffy too, If they aren't working, why take them or if they cause intolerable side effects why take them, are their no other choices? Morphine and codeine and that's it? Sounds like the 1800's.
The only time I have met or heard of anyone else doing a blind test is when they do a trial for the for the intrathecal morphine pump. They do sometimes use a plecebo to rule out candidates that will report great relief simply because they think they are getting something strong. But to keep every med blind, and to sit around and see if the docs first guess works, not to adjust or increase the dose to attempt to manage your pain with the right dose , just sounds crazy.
Severing nerves is something we learned was a bad idea back in the 70's, Lkely the pain comes back and is worse than every and the pan as the nerve dies is excuciating, and they wonder what's wrong.
I'll give you recipe that absolutely works for constipation, I got it from a Hospice site where people are taking a hundred times the amount of meds your taking. It's called Yakima fruit paste and I haven't used any OTC or prescription meds for constipation since I made the paste. No cramps, no enemas, I didn't even know people still used them. Just kidding, ;) I'll post the recipe later.
Your doc obviouly thinks the shotgun aproach is the best, where they through low doses of every med they can think of and the kitchen sink at you and then scratch their head as to why your not getting relief and why you have so many intolerable side effects. Sound about right?
Gotta stretch and think, I would emand to know what test is being dne, whatmed is being used and the purpose of each test. Here in te states, cdocs are so plentiful, you don't have to ut up with Svengali who keeps everything amystery and jumps to rediculous conclsions from a single injection. I vertainly wouldn't even be looking into Vega nerve stim if it has to be done with Ether as an anesthetic and your not alowed to ask questions.
I'll be back, I need to learn more about what's available in your country.
Take care, Dave
Yakima Fruit Paste
used in hospice care for terminal high dose patients
DOSE: 1-2 tablespoons per day
1 pound prunes
1 pound raisins-pitted
1 pound figs, I also added a pound of plums
4 oz senna tea (look in your health food store, it looks like a bunch of leaves)
or buy the tea bags but it took 60 tea bags to get 4 oz of senna last time I made it. It's some potent tea.
1 cup brown sugar
1 cup lemon juice
1. Prepare tea-use about 2 1/2 cups boiled water added to tea/tea bags and steep 5 minutes.
2. Strain tea to remove tea leaves and add only 1 pint tea to a large pot, then add fruit.
3. Boil fruit and tea for 5 minutes.
4. Remove from heat and add sugar & lemon juice. Allow to cool.
5. Use hand mixer or food processor to blend fruit mixture into smooth paste.
6. Place in plastic container and place in freezer. (Paste will not freeze but will keep forever in freezer).
7. Spoon out what you require each day.
Enjoy eating it straight off the spoon.
Spread it on toast or add hot water and make a drink.Add to tea,put it on a cracker, Peanut butter will cover the taste if you don't like it, But it absoltely works and you can put the enemas back on the coverd wagon. I would prefer to give them blindly to that doc, but I knocked docs off their pedestal a long time ago and stopped being their guinea pig. It's hard to drink from that darn water bottle anyway.LOL
* If the fruit paste is not working (you are not having bowel movements) then you need to increase the amount of fruit paste you are taking.
* If the fruit paste makes you have very loose stools then you need to cut down on the amount of fruit paste you are taking. Perhaps even taking it every other day in some cases.
.
I was under the impreson that you were at the end of the line and they just couldn't figure out what to do with you, That's not true. Or is it in our country?
Pannadeine for intractable pain, what a joke. Each tablet only contains 8 mgs of codeine and 500 mgs of tylenol or whatever ya'll call it down under. Codeine is weak and extremly constipating and very harsh on your Gi system. How could you possibly bennefit from such a small dose ? The price your paying as far as constipation makes it totally worthless. Your taking the max daily dose of Tylenol which will damage your liver with prolonged use. If you take Tylenol daily you shouldn't exceed 2000mgs, wich would be 4 Pannadeine a day.
IN the US, Tylenol and codeine tabs come in 15mg, 30, 60 mg strength and only use 325 of tylenol in each pill and is still considerd the bottom rung on the pain med ladder, the weakest meds with some harsh GI side effects.
Your morphine use is limited, not high doses at all and only short acting. The other meds yuor on are pretty iffy too, If they aren't working, why take them or if they cause intolerable side effects why take them, are their no other choices? Morphine and codeine and that's it? Sounds like the 1800's.
The only time I have met or heard of anyone else doing a blind test is when they do a trial for the for the intrathecal morphine pump. They do sometimes use a plecebo to rule out candidates that will report great relief simply because they think they are getting something strong. But to keep every med blind, and to sit around and see if the docs first guess works, not to adjust or increase the dose to attempt to manage your pain with the right dose , just sounds crazy.
Severing nerves is something we learned was a bad idea back in the 70's, Lkely the pain comes back and is worse than every and the pan as the nerve dies is excuciating, and they wonder what's wrong.
I'll give you recipe that absolutely works for constipation, I got it from a Hospice site where people are taking a hundred times the amount of meds your taking. It's called Yakima fruit paste and I haven't used any OTC or prescription meds for constipation since I made the paste. No cramps, no enemas, I didn't even know people still used them. Just kidding, ;) I'll post the recipe later.
Your doc obviouly thinks the shotgun aproach is the best, where they through low doses of every med they can think of and the kitchen sink at you and then scratch their head as to why your not getting relief and why you have so many intolerable side effects. Sound about right?
Gotta stretch and think, I would emand to know what test is being dne, whatmed is being used and the purpose of each test. Here in te states, cdocs are so plentiful, you don't have to ut up with Svengali who keeps everything amystery and jumps to rediculous conclsions from a single injection. I vertainly wouldn't even be looking into Vega nerve stim if it has to be done with Ether as an anesthetic and your not alowed to ask questions.
I'll be back, I need to learn more about what's available in your country.
Take care, Dave
Yakima Fruit Paste
used in hospice care for terminal high dose patients
DOSE: 1-2 tablespoons per day
1 pound prunes
1 pound raisins-pitted
1 pound figs, I also added a pound of plums
4 oz senna tea (look in your health food store, it looks like a bunch of leaves)
or buy the tea bags but it took 60 tea bags to get 4 oz of senna last time I made it. It's some potent tea.
1 cup brown sugar
1 cup lemon juice
1. Prepare tea-use about 2 1/2 cups boiled water added to tea/tea bags and steep 5 minutes.
2. Strain tea to remove tea leaves and add only 1 pint tea to a large pot, then add fruit.
3. Boil fruit and tea for 5 minutes.
4. Remove from heat and add sugar & lemon juice. Allow to cool.
5. Use hand mixer or food processor to blend fruit mixture into smooth paste.
6. Place in plastic container and place in freezer. (Paste will not freeze but will keep forever in freezer).
7. Spoon out what you require each day.
Enjoy eating it straight off the spoon.
Spread it on toast or add hot water and make a drink.Add to tea,put it on a cracker, Peanut butter will cover the taste if you don't like it, But it absoltely works and you can put the enemas back on the coverd wagon. I would prefer to give them blindly to that doc, but I knocked docs off their pedestal a long time ago and stopped being their guinea pig. It's hard to drink from that darn water bottle anyway.LOL
* If the fruit paste is not working (you are not having bowel movements) then you need to increase the amount of fruit paste you are taking.
* If the fruit paste makes you have very loose stools then you need to cut down on the amount of fruit paste you are taking. Perhaps even taking it every other day in some cases.
.
Torley
05-24-2005, 09:30 AM
Dave the medications below are teh only ones that are subsidised here in New Zealand and are free all others would cost money to get so thats it really I do know that they are also gogint to do a duragesic patch
yes I have in tolerable side affects I swest profusely, cant sleep need pain for taht need meds to wake up, for everythign really
was under the impreson that you were at the end of the line and they just couldn't figure out what to do with you, That's not true. Or is it in our country?
Dave I am atth eend of th eline I cant cope anymore 6 years and still severe pain . I want something to help diagnose or sort it
Morphine and codeine and that's it? Sounds like the 1800's. yeh thats about all that is prescribed.
Dave he wont tell me what drugs are inserted and when only like after the 2 blocks will he tell me anything
I dont know why it all has to be done so i dont knwo what it is????? I have asked and he wont tell me? so I ak not sure why? I was wondering if it is so that he can justify me getting a pump or whether hes tesing me to see that i have pain???
Gotta stretch and think, I would emand to know what test is being dne, whatmed is being used and the purpose of each test. Here in te states, cdocs are so plentiful, you don't have to ut up with Svengali who keeps everything amystery and jumps to rediculous conclsions from a single injection. I vertainly wouldn't even be looking into Vega nerve stim if it has to be done with Ether as an anesthetic and your not alowed to ask questions.
thanks I wil try that recipe.
Its so agonising waiting an dnot know what is going to happen and whatdrug it is going to be. Why would people do this? have you seen it anywhere else he is from sweden .
thanks
debs
yes I have in tolerable side affects I swest profusely, cant sleep need pain for taht need meds to wake up, for everythign really
was under the impreson that you were at the end of the line and they just couldn't figure out what to do with you, That's not true. Or is it in our country?
Dave I am atth eend of th eline I cant cope anymore 6 years and still severe pain . I want something to help diagnose or sort it
Morphine and codeine and that's it? Sounds like the 1800's. yeh thats about all that is prescribed.
Dave he wont tell me what drugs are inserted and when only like after the 2 blocks will he tell me anything
I dont know why it all has to be done so i dont knwo what it is????? I have asked and he wont tell me? so I ak not sure why? I was wondering if it is so that he can justify me getting a pump or whether hes tesing me to see that i have pain???
Gotta stretch and think, I would emand to know what test is being dne, whatmed is being used and the purpose of each test. Here in te states, cdocs are so plentiful, you don't have to ut up with Svengali who keeps everything amystery and jumps to rediculous conclsions from a single injection. I vertainly wouldn't even be looking into Vega nerve stim if it has to be done with Ether as an anesthetic and your not alowed to ask questions.
thanks I wil try that recipe.
Its so agonising waiting an dnot know what is going to happen and whatdrug it is going to be. Why would people do this? have you seen it anywhere else he is from sweden .
thanks
debs
Shoreline
05-26-2005, 02:52 PM
Hey Deb, I understand your at the end of your rope, I'm really sorry, I've been there, where you can't get an answer, your pray the next surgery will work and nobody is doing anything about the pain your in. I've been on meds since 2000, prior to that I only had morphine post op and taken what would be the next step in strength from codeine here in the US, Hydrocodone and then Oxycodone. Those are the chemical names not brand and don't distinguish long acting or short acting. But they are both synthetic opiates, created to be more potent with less side effects. There is also Hydromorphone, "Dilaudid" all 3 of these can be prescribed and are fairly cheap in the states without any Tylenol. But I don't what is reasonable. What your describing would be ridiculous in the states in this day and age.
Most of the long acting medss are outrageous in price, but methadone is very cheap, and very effective on nerve pain. It would be worth tryng before any kind of implant. A large dose in the states would cost 60 US dollars a month. That's what I was took for several years before the pump. I don't have prescription insurance so I pay cash for my meds. I have no idea what the economy is like down there, But 120 4 mg dilaudid would cost about 30 us dollars. 120 30mg morphine are about 30 US dolllars.
All but long acting meds can be found reasonably cheap. Could you talk to your doc about methadone? I can give you some good articles about it? Is it available?
I can except you have no control with very few options, That sucks but I understand not everywhere is like here. Then what you have to do is follow this guys plan and see where it goes. Maybe there is method to his madness and maybe Euopean docs aren't ever questioned by their patients? Customs may be very different where really spanning the globe from the states to New Zealand with a swede doc
You may be right, that they are doing placebo and blind trials trying to prove or disprove your pain. Maybe when the blinders come off he will explain that he thinks and if you would b a good candidate for a pump or a spinal cord stimulator or a vega nerve stim. But I would think European docs know that people have computers and can find out if this is normal or that's standard procedure. Being on the other side of the world, makes it tough.
They are doing something, it's not happening fast enough but you can certainly ask him if he thinks he can do anything to help, and keep asking him. It's human nature for you to want to know.
Do you have something like the FDA, It's our food and drug administration in NZ. All meds have to be approved and their web site is a compiled list of every med made and who makes it or when the patent was issued. Do you have anything like that you can guide me too?
Also back to possibly seeing a different doc, Is there a city with a medical school there? It may be the place to go if your in a rural area? The bottom line is there are things to try, manufacturers of meds have programs to give meds to folks that don't have insurance and can't afford them. The answer may be just around the corner, so don't give up when this doc may be coming to his private conclusion and then share his treatment plan. All this would be strange in the US, you have a huge advantage when you can fire your doc and find another.
The thing is, don’t give up. You see one doc and they have an opinion, they may think they have the answer to yur pain or can reduce it and tell you you have to live with the rest. From 93-99 I had 3 surgeriies and went to 2 PM clinics and saw a dozen PM docs. No Not one PM doc used any tupe of pain med, If you even asked for pain meds you were labeled an addict. It turned out that the doc I see know has been in my own back yard the entire time. Someone probably labeled me as a drug seeker and I should be screened for addiction problems. I had a very rough time after surgery when they cut the meds off. I hurt worse than ever and they said you don’t need these meds, try prozac and everything else under the sun. Because some doc, somehwere decided It wouldn’t be a good idea I was never referred to the doc I see know. They knw he used opiates and didn’t agree with his methods.
Talk about docs having to much control over your life. But my present doc has been in the area for years and was a prominent psychiatrist and neurologist before specializing in PM. If you give up, you don’t what your loosing and if you had just waited another month and gotten the name of a doc outside your present loop o docs that may have a preformed opinion.
Do hand in there, there is an answer even if it means more morphine. Morphine worked well for me. I wouldn’t bother with codeine, It’s not worth all that tylenol your have to take to get so few mgs of a very weak med.
Will you tell us how things go after the next injection and if you learned anything.?
Take care, Dave
PS sorry this response was so slow, I just don’t know exactly what to say or where to go other than giving up is never an option.
Most of the long acting medss are outrageous in price, but methadone is very cheap, and very effective on nerve pain. It would be worth tryng before any kind of implant. A large dose in the states would cost 60 US dollars a month. That's what I was took for several years before the pump. I don't have prescription insurance so I pay cash for my meds. I have no idea what the economy is like down there, But 120 4 mg dilaudid would cost about 30 us dollars. 120 30mg morphine are about 30 US dolllars.
All but long acting meds can be found reasonably cheap. Could you talk to your doc about methadone? I can give you some good articles about it? Is it available?
I can except you have no control with very few options, That sucks but I understand not everywhere is like here. Then what you have to do is follow this guys plan and see where it goes. Maybe there is method to his madness and maybe Euopean docs aren't ever questioned by their patients? Customs may be very different where really spanning the globe from the states to New Zealand with a swede doc
You may be right, that they are doing placebo and blind trials trying to prove or disprove your pain. Maybe when the blinders come off he will explain that he thinks and if you would b a good candidate for a pump or a spinal cord stimulator or a vega nerve stim. But I would think European docs know that people have computers and can find out if this is normal or that's standard procedure. Being on the other side of the world, makes it tough.
They are doing something, it's not happening fast enough but you can certainly ask him if he thinks he can do anything to help, and keep asking him. It's human nature for you to want to know.
Do you have something like the FDA, It's our food and drug administration in NZ. All meds have to be approved and their web site is a compiled list of every med made and who makes it or when the patent was issued. Do you have anything like that you can guide me too?
Also back to possibly seeing a different doc, Is there a city with a medical school there? It may be the place to go if your in a rural area? The bottom line is there are things to try, manufacturers of meds have programs to give meds to folks that don't have insurance and can't afford them. The answer may be just around the corner, so don't give up when this doc may be coming to his private conclusion and then share his treatment plan. All this would be strange in the US, you have a huge advantage when you can fire your doc and find another.
The thing is, don’t give up. You see one doc and they have an opinion, they may think they have the answer to yur pain or can reduce it and tell you you have to live with the rest. From 93-99 I had 3 surgeriies and went to 2 PM clinics and saw a dozen PM docs. No Not one PM doc used any tupe of pain med, If you even asked for pain meds you were labeled an addict. It turned out that the doc I see know has been in my own back yard the entire time. Someone probably labeled me as a drug seeker and I should be screened for addiction problems. I had a very rough time after surgery when they cut the meds off. I hurt worse than ever and they said you don’t need these meds, try prozac and everything else under the sun. Because some doc, somehwere decided It wouldn’t be a good idea I was never referred to the doc I see know. They knw he used opiates and didn’t agree with his methods.
Talk about docs having to much control over your life. But my present doc has been in the area for years and was a prominent psychiatrist and neurologist before specializing in PM. If you give up, you don’t what your loosing and if you had just waited another month and gotten the name of a doc outside your present loop o docs that may have a preformed opinion.
Do hand in there, there is an answer even if it means more morphine. Morphine worked well for me. I wouldn’t bother with codeine, It’s not worth all that tylenol your have to take to get so few mgs of a very weak med.
Will you tell us how things go after the next injection and if you learned anything.?
Take care, Dave
PS sorry this response was so slow, I just don’t know exactly what to say or where to go other than giving up is never an option.
Torley
06-06-2005, 10:33 AM
Hi Dave
Thanks for your reply. I have been in hopsital for 2 visits and 12 days due to a concussion and a spinal headache on top of that from th eepidural. I am still in a lot of pain and had a horrible stay in hospital.
Whilst there the pain in my head set of my abdo pain and they put me on ketamine for pain which worked ok.
The previous pain doc who did the experiments was very defensive due to the spinal headache and sent me away when i came in, I left the hospital fell over out side in pain of a 9 and then called the duty manager and went back into the hsopital.
I am investigating a complaint. He threatened me with no future pain treatment as I suspect he has been doign tests which from what I can see arte not ethical. I have now complained and am seeing head of pain team there.
I am on huge doses of sevredol right now for both and they have also started me on clonazepam as I couldnt sleep. Is this drug also help with pain do you know?
I am goign to proceed and meet with the hea dof the pain team a different guy and ask for my results and what treatment they can give.
I have previously tried years ago methadone but from what you say it may be worthwhile.
sorry its taken so long to answer
cheers
debs
Thanks for your reply. I have been in hopsital for 2 visits and 12 days due to a concussion and a spinal headache on top of that from th eepidural. I am still in a lot of pain and had a horrible stay in hospital.
Whilst there the pain in my head set of my abdo pain and they put me on ketamine for pain which worked ok.
The previous pain doc who did the experiments was very defensive due to the spinal headache and sent me away when i came in, I left the hospital fell over out side in pain of a 9 and then called the duty manager and went back into the hsopital.
I am investigating a complaint. He threatened me with no future pain treatment as I suspect he has been doign tests which from what I can see arte not ethical. I have now complained and am seeing head of pain team there.
I am on huge doses of sevredol right now for both and they have also started me on clonazepam as I couldnt sleep. Is this drug also help with pain do you know?
I am goign to proceed and meet with the hea dof the pain team a different guy and ask for my results and what treatment they can give.
I have previously tried years ago methadone but from what you say it may be worthwhile.
sorry its taken so long to answer
cheers
debs
Shoreline
06-06-2005, 01:09 PM
Hey Deb, SSorry to hear about the spinal headache, I have had several and they aren't fun, but they are normal risk of any type of spinal njection, It doesn't mean the doc screwed up and needs to be defensive? I don't know why he would take such a stand, shut up about your pain from a spinal fluid leak or I'l cut you off? I think I would be screaming from the rooftops abut that type of extortion. That's really what it is, extortion. I never blamed anyone for a nicked dura, just wanted it treated and they did.
Ketamine works by blocing the NMDA receptor, which prevents you from feeling pretty much any pain, at a high enuh dose, but it has some pretty nasty side effects to use regualury , like as an outpatient. It has some potent disaciative propertiesmuch like the drug PCP. Methadone has NMDA receptor blocking ability too, that's why it's so useful in treating neuropathic pain. There are sme other meds that have the same properties, Like dextromathorphan, Nemanda and a few others.
Did you ever find out what his conclusion was after all these tests or did the flow of info sto when you had the spinal headache. It's so easy fr dcs to dismis us as drug addicts and say there isn't anything they need pain waise, just drug treatment. Don't feel bad, because it hapens to most of us at some point, etither by surgeons that don't want to admit surgery failed, By ER docs that don't fnd chronic pain as interesting as a car accident or by docs that just aren't comfortable or knwladgeable about opiates and treating CP.
I would love to dig through so ind of govt data base of what meds you all have available and if you might qualify for sme type of patient assistance program. The 0problem is you need a doc to prescribe the drug needed for a manfacturer to supply it. Methadone is a very cheap alternatve, certainly ceaper than continually hospitilizing you. The side effects can be hard to get used too. All that tylenol and codeine can' be doing much aside from making your ears ring.
I'll do some diggingand see what Ican fnd in your contry, but if you can point me to a govt agency that like our food and drug admin, it would be helpful.
Hag in there and I won't bail andgive up , 90% of the population does repond well to opiates, I think yourdoc is wrng about being morphine tolerant, you might have some tolerance, to lower doses, but that dobtut there truly is no ceiling on the amount of morphine you can takeif you proach the dose slowly and safely. Morphine does no organ damage so the only limit is the amount of side effects you can tolerate.
I don't see how it's ethical to expect you to submit to any procedure and any med without knowing the nature of the med, the procedure and why he's doing it. Lordy, what a mess. But do hang in there, I had docs teling me I had no other options for 7 years before anyone prescribed a long acting pain med or treatd my pain other than imediate post op pain. Even then treatment was very short lived as they didn't want me to become the addict they were so convinced I was. Adicted to what? Going to useless docs for useless treatment? :rolleyes: I didn't have access to any pain meds to be addicted too.
Nobody would put themselves thrugh all this crap if they were not so desperate for relef from pain. Klonopin can be hlpfl in several ways, On it's an antiseizure meds, so the logic behind using antiseizure meds holds true for all anti seizure meds. 2 it's a god long acting ant anxiety med and when you hurt so bad you can't breath, you tend to have alot of anxiety. Klonopin will also increase the effectiveness of opiates, so It's a fairly safe med with multiple benefits.
Perahps the head of the PM dept can figure out what the heck this doc was doing and why , you certainly deserve an explantion, a diagnosis, or some type of conculsion from enduring all those procedures. What did they learn from all that?
Take care, Dave
Ketamine works by blocing the NMDA receptor, which prevents you from feeling pretty much any pain, at a high enuh dose, but it has some pretty nasty side effects to use regualury , like as an outpatient. It has some potent disaciative propertiesmuch like the drug PCP. Methadone has NMDA receptor blocking ability too, that's why it's so useful in treating neuropathic pain. There are sme other meds that have the same properties, Like dextromathorphan, Nemanda and a few others.
Did you ever find out what his conclusion was after all these tests or did the flow of info sto when you had the spinal headache. It's so easy fr dcs to dismis us as drug addicts and say there isn't anything they need pain waise, just drug treatment. Don't feel bad, because it hapens to most of us at some point, etither by surgeons that don't want to admit surgery failed, By ER docs that don't fnd chronic pain as interesting as a car accident or by docs that just aren't comfortable or knwladgeable about opiates and treating CP.
I would love to dig through so ind of govt data base of what meds you all have available and if you might qualify for sme type of patient assistance program. The 0problem is you need a doc to prescribe the drug needed for a manfacturer to supply it. Methadone is a very cheap alternatve, certainly ceaper than continually hospitilizing you. The side effects can be hard to get used too. All that tylenol and codeine can' be doing much aside from making your ears ring.
I'll do some diggingand see what Ican fnd in your contry, but if you can point me to a govt agency that like our food and drug admin, it would be helpful.
Hag in there and I won't bail andgive up , 90% of the population does repond well to opiates, I think yourdoc is wrng about being morphine tolerant, you might have some tolerance, to lower doses, but that dobtut there truly is no ceiling on the amount of morphine you can takeif you proach the dose slowly and safely. Morphine does no organ damage so the only limit is the amount of side effects you can tolerate.
I don't see how it's ethical to expect you to submit to any procedure and any med without knowing the nature of the med, the procedure and why he's doing it. Lordy, what a mess. But do hang in there, I had docs teling me I had no other options for 7 years before anyone prescribed a long acting pain med or treatd my pain other than imediate post op pain. Even then treatment was very short lived as they didn't want me to become the addict they were so convinced I was. Adicted to what? Going to useless docs for useless treatment? :rolleyes: I didn't have access to any pain meds to be addicted too.
Nobody would put themselves thrugh all this crap if they were not so desperate for relef from pain. Klonopin can be hlpfl in several ways, On it's an antiseizure meds, so the logic behind using antiseizure meds holds true for all anti seizure meds. 2 it's a god long acting ant anxiety med and when you hurt so bad you can't breath, you tend to have alot of anxiety. Klonopin will also increase the effectiveness of opiates, so It's a fairly safe med with multiple benefits.
Perahps the head of the PM dept can figure out what the heck this doc was doing and why , you certainly deserve an explantion, a diagnosis, or some type of conculsion from enduring all those procedures. What did they learn from all that?
Take care, Dave
Torley
06-07-2005, 12:33 AM
Hi dave
drugs are supplied subsidised through the below link. fully subdised one sI pay nothing for but things like neurontin are pricey ets and synthetic morphine
http://www.pharmac.govt.nz/
pharmac have free medicines eg morphine and methadone are free
My Relationship is falling apart he thinks I should suck it up more, and our sex life has almost been non existant due to the meds, which I have tried to get changed and help for 5 years. Every time I have been to the doctor I have asked for hlep etc with my list and nothing. so its lead me in a terrible predicamant.
I was treated pretty badly in hospital, eg delays in giving meds etc eg 1/12 hours and no one certified to adminsite rmy pca and so 2 hour waits, it was bad . I was beside myslef plus they had locke dmy meds up for security reasons hmmmmm yeh right. so I had no control to help. Our hospitals are all state funded so I have no choice where I go. its like it or lump it
I see the Head Pain guy on Thursday, he will review meds I am on he may even run a trial of neurontin, I will also ask what was the results of tests and why were they blinded, why did I get rarcke dup by the doc and he said I left voluntarily all i wanted was pain relief, He also told me he would abort future pain treatment and why did he lie about me levaing voluntairly when I went out of Emeregncy fell over twice again on my head and then called the duty manager to complain. My mum complained earlier that day re his ethics and procedures so I think that is why he excerbrated it and had more of a go at me I think he wanted to get me out of there so there was no evidence.
All I asked for was pain relief, he started on this blame thing and defensive thing, I sai dno I just want help my pain is at a 9. I think he realise dhe stuffed up as he is foreign and may have been using me as a guinea pig, My mum got the code of patients rights and read it and he breaches about 3 clauses.
Brain fog, constipation, pain, depression are some of my ongoing problems I want to discuss as well as all th eprocedures and results.
Thanks for not giving up on me, words cant express my gratitude.
will talk more later
thanks
debs
drugs are supplied subsidised through the below link. fully subdised one sI pay nothing for but things like neurontin are pricey ets and synthetic morphine
http://www.pharmac.govt.nz/
pharmac have free medicines eg morphine and methadone are free
My Relationship is falling apart he thinks I should suck it up more, and our sex life has almost been non existant due to the meds, which I have tried to get changed and help for 5 years. Every time I have been to the doctor I have asked for hlep etc with my list and nothing. so its lead me in a terrible predicamant.
I was treated pretty badly in hospital, eg delays in giving meds etc eg 1/12 hours and no one certified to adminsite rmy pca and so 2 hour waits, it was bad . I was beside myslef plus they had locke dmy meds up for security reasons hmmmmm yeh right. so I had no control to help. Our hospitals are all state funded so I have no choice where I go. its like it or lump it
I see the Head Pain guy on Thursday, he will review meds I am on he may even run a trial of neurontin, I will also ask what was the results of tests and why were they blinded, why did I get rarcke dup by the doc and he said I left voluntarily all i wanted was pain relief, He also told me he would abort future pain treatment and why did he lie about me levaing voluntairly when I went out of Emeregncy fell over twice again on my head and then called the duty manager to complain. My mum complained earlier that day re his ethics and procedures so I think that is why he excerbrated it and had more of a go at me I think he wanted to get me out of there so there was no evidence.
All I asked for was pain relief, he started on this blame thing and defensive thing, I sai dno I just want help my pain is at a 9. I think he realise dhe stuffed up as he is foreign and may have been using me as a guinea pig, My mum got the code of patients rights and read it and he breaches about 3 clauses.
Brain fog, constipation, pain, depression are some of my ongoing problems I want to discuss as well as all th eprocedures and results.
Thanks for not giving up on me, words cant express my gratitude.
will talk more later
thanks
debs
Torley
06-16-2005, 11:18 PM
Hi Dave
I saw my head of pain dept last week.
he has taken me off voltarene as he thinks I have bleeding from my stomach and problems with back up at the top of my bowel which they saw in an xray in hopital. I have no idea what that all means except that I have waste that may have been sitting there awhil as I swing between constipation and diarrhea.
So I will make an appt to see a gastro.
he has referred me to see a psychaitrist to look at the antidepressants I am on.
I am also still takign large doses of painm meds for my head, eg maybe spinal maybe concussionm.
He put me on neurontin and I had an allergic reaction to it, then tghey gave me phenrnergan and thatw as worse then th eallergic reaction I had to take 170 mg seevreol in an hour and couldnt open my eyes fo r2 days, i have since tried the neurontin again and I seem to be tolerating it now.
he will reviw my case, in th enext week or so.
I also got back my notes and have read what the other suspect pain doc had said and lots were omitted eg no adverse effects hmmmm. The comment he had put in was neurpathic somatci pain. What does somatci pain mean?
The last test he had planned was an intercostal block, I am not sure what that is and why ?
Your thoughts?
cheers
debs
I saw my head of pain dept last week.
he has taken me off voltarene as he thinks I have bleeding from my stomach and problems with back up at the top of my bowel which they saw in an xray in hopital. I have no idea what that all means except that I have waste that may have been sitting there awhil as I swing between constipation and diarrhea.
So I will make an appt to see a gastro.
he has referred me to see a psychaitrist to look at the antidepressants I am on.
I am also still takign large doses of painm meds for my head, eg maybe spinal maybe concussionm.
He put me on neurontin and I had an allergic reaction to it, then tghey gave me phenrnergan and thatw as worse then th eallergic reaction I had to take 170 mg seevreol in an hour and couldnt open my eyes fo r2 days, i have since tried the neurontin again and I seem to be tolerating it now.
he will reviw my case, in th enext week or so.
I also got back my notes and have read what the other suspect pain doc had said and lots were omitted eg no adverse effects hmmmm. The comment he had put in was neurpathic somatci pain. What does somatci pain mean?
The last test he had planned was an intercostal block, I am not sure what that is and why ?
Your thoughts?
cheers
debs
Shoreline
06-21-2005, 04:30 PM
Hey Debs,
It's easier to simply copy from a medical dictionary about the 3 types of pain, I would end up with a book of examples.LOL ;)
Types of Pain
There are three types of pain, based on where in the body the pain is felt: somatic, visceral, and neuropathic. Pain of all three types can be either acute or chronic. Somatic, visceral, and neuropathic pain can all be felt at the same time or singly and at different times. Most cancer patients experience both somatic and visceral pain. Only about 15-20% of all cancer patients report neuropathic pain. The different types of pain respond differently to the various pain management therapies. Somatic and visceral pain are both easier to manage than neuropathic pain.
Somatic Pain
Somatic pain is caused by the activation of pain receptors in either the cutaneous (body surface) or deep tissues (musculoskeletal tissues). When it occurs in the musculoskeletal tissues, it is called deep somatic pain. Common causes of somatic cancer pain include metastasis in the bone (an example of deep somatic pain) and postsurgical pain from a surgical incision (an example of surface pain). Deep somatic pain is usually described as dull or aching but localized. Surface somatic pain is usually sharper and may have a burning or pricking quality.
Visceral Pain
"Viscera" refers to the internal areas of the body that are enclosed within a cavity. Visceral pain is caused by activation of pain receptors resulting from infiltration, compression, extension, or stretching of the thoracic (chest), abdominal, or pelvic viscera. Common causes of visceral pain include pancreatic cancer and metastases in the abdomen. Visceral pain is not well localized and is usually described as pressure-like, deep squeezing.
Neuropathic Pain
Neuropathic pain is caused by injury to the nervous system either as a result of a tumor compressing nerves or the spinal cord, or cancer actually infiltrating the nerves or spinal cord. It also results from chemical damage to the nervous system that may be caused by cancer treatment (chemotherapy, radiation, surgery). This type of pain is severe and usually described as burning or tingling. Tumors that lie close to neural structures are believed to cause the most severe pain that cancer patients feel.
Costovertebral nerve block
A block that is performed under fluoroscopy to identify the costovertebral joint as the pain generator and decease or relieve pain in that area and out toward the lateral rib cage.
Intercostal nerve block- An intercostal nerve block is an injection of a local anesthetic in the area between two ribs. An intercostal nerve block is performed for pain due to herpes zoster (commonly known as shingles), an acute viral infection that causes inflammation of the nerves that spread outward from the spine. It may also be performed for pain caused from surgical incision in the chest area or to help determine the cause of your pain. (diagnostic nerve block)
He would likely do a block for diagnostic purposes, if it worked, the next step would be either some type of nerve destrution, "Chemical or Radio Frequency Ablation" or perhaps a spinal cord stim trial. The newer SCS have multiple leads with multiple settings, much more advanced than the old sstem, but tey need to find which nerves to buzz or destroy. Did you bleed excessively or require a chest tube during your surgery. A chest tube can cause damage to the innyercostal nerves. Also has anyone sugested you might have RSD or CRPS "chronic reginonal pain syndrome" This usally occurs from poorly treated pain or mis diagnosed problems. Is the area discolored, overly sensetive to hot or cold, to the slighest touch?
Because nerve damage doesn't just happen. Complications from surgery, instruments or gauze left behind, chest tubes, infection can cause these problems. Did you Code during surgery "Heart stop" and require chest compression that might have broken or damged ribs and suroundng nerves?
The mystery gets deeper.
Take care and stay in touch, Dave
It's easier to simply copy from a medical dictionary about the 3 types of pain, I would end up with a book of examples.LOL ;)
Types of Pain
There are three types of pain, based on where in the body the pain is felt: somatic, visceral, and neuropathic. Pain of all three types can be either acute or chronic. Somatic, visceral, and neuropathic pain can all be felt at the same time or singly and at different times. Most cancer patients experience both somatic and visceral pain. Only about 15-20% of all cancer patients report neuropathic pain. The different types of pain respond differently to the various pain management therapies. Somatic and visceral pain are both easier to manage than neuropathic pain.
Somatic Pain
Somatic pain is caused by the activation of pain receptors in either the cutaneous (body surface) or deep tissues (musculoskeletal tissues). When it occurs in the musculoskeletal tissues, it is called deep somatic pain. Common causes of somatic cancer pain include metastasis in the bone (an example of deep somatic pain) and postsurgical pain from a surgical incision (an example of surface pain). Deep somatic pain is usually described as dull or aching but localized. Surface somatic pain is usually sharper and may have a burning or pricking quality.
Visceral Pain
"Viscera" refers to the internal areas of the body that are enclosed within a cavity. Visceral pain is caused by activation of pain receptors resulting from infiltration, compression, extension, or stretching of the thoracic (chest), abdominal, or pelvic viscera. Common causes of visceral pain include pancreatic cancer and metastases in the abdomen. Visceral pain is not well localized and is usually described as pressure-like, deep squeezing.
Neuropathic Pain
Neuropathic pain is caused by injury to the nervous system either as a result of a tumor compressing nerves or the spinal cord, or cancer actually infiltrating the nerves or spinal cord. It also results from chemical damage to the nervous system that may be caused by cancer treatment (chemotherapy, radiation, surgery). This type of pain is severe and usually described as burning or tingling. Tumors that lie close to neural structures are believed to cause the most severe pain that cancer patients feel.
Costovertebral nerve block
A block that is performed under fluoroscopy to identify the costovertebral joint as the pain generator and decease or relieve pain in that area and out toward the lateral rib cage.
Intercostal nerve block- An intercostal nerve block is an injection of a local anesthetic in the area between two ribs. An intercostal nerve block is performed for pain due to herpes zoster (commonly known as shingles), an acute viral infection that causes inflammation of the nerves that spread outward from the spine. It may also be performed for pain caused from surgical incision in the chest area or to help determine the cause of your pain. (diagnostic nerve block)
He would likely do a block for diagnostic purposes, if it worked, the next step would be either some type of nerve destrution, "Chemical or Radio Frequency Ablation" or perhaps a spinal cord stim trial. The newer SCS have multiple leads with multiple settings, much more advanced than the old sstem, but tey need to find which nerves to buzz or destroy. Did you bleed excessively or require a chest tube during your surgery. A chest tube can cause damage to the innyercostal nerves. Also has anyone sugested you might have RSD or CRPS "chronic reginonal pain syndrome" This usally occurs from poorly treated pain or mis diagnosed problems. Is the area discolored, overly sensetive to hot or cold, to the slighest touch?
Because nerve damage doesn't just happen. Complications from surgery, instruments or gauze left behind, chest tubes, infection can cause these problems. Did you Code during surgery "Heart stop" and require chest compression that might have broken or damged ribs and suroundng nerves?
The mystery gets deeper.
Take care and stay in touch, Dave
Shoreline
06-21-2005, 05:02 PM
I'm sorry t hear about your relationship having problems. Unfortunately tht's par for the sourse. People get sick or injured and have surgery and medical rtreatment, and our friends and lovedones expect us to get better, most of the time this happens. But when things don't get better or get worse, for sme reason resentment is the best emotion I can think of comes to play. They aOrur spouses or SI's our sympethetic, empethetic up to a point and then they believe we should have gotten better by now or that it's something we can suck up. Unfortunately that isn't always the case. Can yo imagne Christopher Reeves wife telling hm to suck it up and walk . But with his injury, Broken neck she was told from the get go, he wold not recover, he would never walk again, he would likely need t a vebetalator to breath forever. He did proove themmwrong about the Vent, but Her expectations were based on what she was told by the docs after surgery. For the most part our spouses are told surgery went well, shewe should be home soon and have some modeerate pain while recoverying and be back to our old self. When this doesn't hjappen, They start to get resentful and we start to feel guilty for not getting better. Neither is a rational position, but it's a tough thing to deal with. I wouldn't give up hope yet, Some folks have great success from the SCS and from neuroablation, But there are no gaurentees. I do wish you the best and hope they find something to improve things. The psych may be able to help with he relationship problems along with finding the right med. Antidepressants are notorious for negative sexual side effects. Too bad it doesn't work the other way. At least they would be happy. LOL
Take care, Dave
PS. Check out the post about Pump or SCS, I gave the links to the manufacturer of two new SCS units far superior to the old ones.
Take care, Dave
PS. Check out the post about Pump or SCS, I gave the links to the manufacturer of two new SCS units far superior to the old ones.
Torley
06-22-2005, 12:51 AM
Ahh Dave you know so much, are you medically trained as well?
Well yes the next test that the old pain nasty man was going to do was an intercostal blcok so I have emailed the hea dof the pain team to see where to from here.
They want to get on top o fmy sever concussion spinal head pain and I seem to be having success with neurontin and clonazepam.Too bad I cant get that subsidised long term as they only give it to epileptics here.
I have also found my old pain doc, and have seen that he works privately so I have a fall back plan, should it all turn to custard. I see he is a trained anesthetist and surgeon, he was the one that rescued me from surgeons who gave me a general to put an NG tube down and I apsixiated into my lungs choked etc was quite serious an dhe stopped the whole procedure and ripped the tube out
My surgerys are as follows
laproscopic cholyscectomy 1999 I came out of this routine procedure screaming in pain which they were very concerned about this was the start of my problems
Then 2 ERCPS where they cut my spincter twice then I couldn tleave the hospital couldnt eat, couldnt lie down couldnt stop vomiting and pain was severe on fentanyl lost a lot of weight and went downhill
Then in May 1999 they did a laparotomy large incision to investigate they had done bone scanes angograms u name it. They also inserted a feedint j tube in my left side under my ribs from which I was fed for months. They also put in an epidural, wronly inserted ., then reinserted I was able after 6 weeks of pain to get on top of my pain and go home
In 2000 they severed all my splanchnic nerves, my pain didnt go away as expected as they thought I had pancretaitis
2002 Another major attack caused by severe cosntip[ation they gave me picoprep and my whole insides went into spasm I was there 7 weeks on fentnyl amd ketamine pain pump and also another epidural was inserted at the end and a feeding tube inserted again same place. After one week I was able to go home due to this
The feeding tube blocked and It was taken out and a new one reinserted.
I have alot of scars on my stomach, all feeding tubes are in same place where I get pain thru to my back, laparomtomy from stomach to navel.
I also had my appendix removed when I was 12
On my notes that I now have , there are few details where this old pain guy did procedures.hmmmmmm He has said tho somatic neuropathic pain and he wa sinterested in my scars.......
I am intending to lay a complaint about how and what he did to me so that others do not suffer like i have.
I said to him when I first started that I was depressed, written in my notes he said no shes not, pain problems and constipation. I now have back up in the top of my bowel which showed on an xray a couple weeks back in the hsopital, th every problems I wa sthere for 7 weeks previously. I am going to see a gastro guy for help as that with narcotics can cause majors and i have been swinging from cosntipation to diarrhea for years, an dI can use up to 9 hsopital grade fleet enemas and still not have completley gone.... gawd the things then we in pain go through. It may take an hour a night fo rme to deal with . darn it
They did say that they believed that my pain had been treated poorly an dhave referred to wind up .... I hate that name....
Thats why they put me on ketamine a few weeks back in the hsopital and for the very first time I was lucid and not spaced out.....I only wish there was soemthing liek the ketamien to take orally etc.
My whole aim was to get off as many of these drugs orally eg a pump so that I didnt have pills for pills and severe constipation. I wont give up and I will also seek
The feeding tube is like a real large whole that sinks inwards like a belly button
Gallbladder fossa was on my notes appeernetly there was a problem and they went in and fixed it at the time of the laparotmomy
I beleive that the ops they did have done and given me this pain. I was fine until then. I am going to try and prove that.
I note below what u say.....I didnt code but the first surgery I was screaming and I have since read that lap choly's are notorious for problems....
Because nerve damage doesn't just happen. Complications from surgery, instruments or gauze left behind, chest tubes, infection can cause these problems. Did you Code during surgery "Heart stop" and require chest compression that might have broken or damged ribs and suroundng nerves?
The mystery gets deeper
They have suggested CPRS and that my pain was not properly treated..
On the antidepressant side I have heard that lexapro may be better on the sexual side, which I am going to read up on.
Yes and thanks for the words above about sucking it up, its a wonder any relationship survives I am hangin in there but I am th emain breadwinner so its hard.
Its also had trying to tel the otehr half that I cant suck it up sometimes,....I mean I do moistly but its hard, I mean it gets old talkign about it to them , I mean where is the light at the end of the rainbow especially when they hav eno idea what they did to me .So its kinda hard to treat.
I must also say that when I am in hospital it is so short staffed and the ward I was in had nooone certified to put in an IV line for my PCA or to administer it ehnce when line came out or they were sposed to give me hourly meds also and I woudl wait 1 1/2 hours later to get them. So you get felt to be bad for ringing a bell or askign for anything. I also cant sit still even in pain I will walk around or sit up in a chaor lying down is painful for me.
Eg when I wa sin with the concussion and psinal headache it set off my old pain .so lying down helped my head but I couldnt lie down as my abdo pain got worse so I was changing positions every 5 minutes. I find it easier just to sit in a a recliner
thanks again really appreciate your interest and input :)
talk to you soon
debs
Well yes the next test that the old pain nasty man was going to do was an intercostal blcok so I have emailed the hea dof the pain team to see where to from here.
They want to get on top o fmy sever concussion spinal head pain and I seem to be having success with neurontin and clonazepam.Too bad I cant get that subsidised long term as they only give it to epileptics here.
I have also found my old pain doc, and have seen that he works privately so I have a fall back plan, should it all turn to custard. I see he is a trained anesthetist and surgeon, he was the one that rescued me from surgeons who gave me a general to put an NG tube down and I apsixiated into my lungs choked etc was quite serious an dhe stopped the whole procedure and ripped the tube out
My surgerys are as follows
laproscopic cholyscectomy 1999 I came out of this routine procedure screaming in pain which they were very concerned about this was the start of my problems
Then 2 ERCPS where they cut my spincter twice then I couldn tleave the hospital couldnt eat, couldnt lie down couldnt stop vomiting and pain was severe on fentanyl lost a lot of weight and went downhill
Then in May 1999 they did a laparotomy large incision to investigate they had done bone scanes angograms u name it. They also inserted a feedint j tube in my left side under my ribs from which I was fed for months. They also put in an epidural, wronly inserted ., then reinserted I was able after 6 weeks of pain to get on top of my pain and go home
In 2000 they severed all my splanchnic nerves, my pain didnt go away as expected as they thought I had pancretaitis
2002 Another major attack caused by severe cosntip[ation they gave me picoprep and my whole insides went into spasm I was there 7 weeks on fentnyl amd ketamine pain pump and also another epidural was inserted at the end and a feeding tube inserted again same place. After one week I was able to go home due to this
The feeding tube blocked and It was taken out and a new one reinserted.
I have alot of scars on my stomach, all feeding tubes are in same place where I get pain thru to my back, laparomtomy from stomach to navel.
I also had my appendix removed when I was 12
On my notes that I now have , there are few details where this old pain guy did procedures.hmmmmmm He has said tho somatic neuropathic pain and he wa sinterested in my scars.......
I am intending to lay a complaint about how and what he did to me so that others do not suffer like i have.
I said to him when I first started that I was depressed, written in my notes he said no shes not, pain problems and constipation. I now have back up in the top of my bowel which showed on an xray a couple weeks back in the hsopital, th every problems I wa sthere for 7 weeks previously. I am going to see a gastro guy for help as that with narcotics can cause majors and i have been swinging from cosntipation to diarrhea for years, an dI can use up to 9 hsopital grade fleet enemas and still not have completley gone.... gawd the things then we in pain go through. It may take an hour a night fo rme to deal with . darn it
They did say that they believed that my pain had been treated poorly an dhave referred to wind up .... I hate that name....
Thats why they put me on ketamine a few weeks back in the hsopital and for the very first time I was lucid and not spaced out.....I only wish there was soemthing liek the ketamien to take orally etc.
My whole aim was to get off as many of these drugs orally eg a pump so that I didnt have pills for pills and severe constipation. I wont give up and I will also seek
The feeding tube is like a real large whole that sinks inwards like a belly button
Gallbladder fossa was on my notes appeernetly there was a problem and they went in and fixed it at the time of the laparotmomy
I beleive that the ops they did have done and given me this pain. I was fine until then. I am going to try and prove that.
I note below what u say.....I didnt code but the first surgery I was screaming and I have since read that lap choly's are notorious for problems....
Because nerve damage doesn't just happen. Complications from surgery, instruments or gauze left behind, chest tubes, infection can cause these problems. Did you Code during surgery "Heart stop" and require chest compression that might have broken or damged ribs and suroundng nerves?
The mystery gets deeper
They have suggested CPRS and that my pain was not properly treated..
On the antidepressant side I have heard that lexapro may be better on the sexual side, which I am going to read up on.
Yes and thanks for the words above about sucking it up, its a wonder any relationship survives I am hangin in there but I am th emain breadwinner so its hard.
Its also had trying to tel the otehr half that I cant suck it up sometimes,....I mean I do moistly but its hard, I mean it gets old talkign about it to them , I mean where is the light at the end of the rainbow especially when they hav eno idea what they did to me .So its kinda hard to treat.
I must also say that when I am in hospital it is so short staffed and the ward I was in had nooone certified to put in an IV line for my PCA or to administer it ehnce when line came out or they were sposed to give me hourly meds also and I woudl wait 1 1/2 hours later to get them. So you get felt to be bad for ringing a bell or askign for anything. I also cant sit still even in pain I will walk around or sit up in a chaor lying down is painful for me.
Eg when I wa sin with the concussion and psinal headache it set off my old pain .so lying down helped my head but I couldnt lie down as my abdo pain got worse so I was changing positions every 5 minutes. I find it easier just to sit in a a recliner
thanks again really appreciate your interest and input :)
talk to you soon
debs
Torley
07-05-2005, 09:09 AM
I wen to see my pain doc the new one last week
lets say teh contrast between the old one and new one are out of sight. I am still considering formalising a complaint against the foreign doctor who treate dme abhorrently and obtaine dno writtten consent for any of his procedures and effectively used me as his guinea pig. I will do this in part to ensure that noone else has to go throught what I went through and maybe to ensure he doesnt stay in New Zealand.
I have gone back and have had good success with neurontin and I am only on 600 mg a day so I hope that with that increaisng I will be able to drop my morphine.
I have also made it very clear that my intention is to have a SCS or pain pump, but they have onoy done scs for angina pain in anotehr hospital clos eby, and maybe 2 to 3 pain pumps in th ehospital I am at now. I have said that this is my expectation as th epain meds cause me such sever cosntipation that I cnat cope anymore.
I have also gone to have a gastrocpy to see if i had an ulcer, what they have seen is a lot of bile and I am unsure why, I saw this sugreon re the cosntipation and his answer was to remove my large bowel and that would fix it, I sai dno I would rather have the pain treated. He was th eperson who left me in the position int he forst place from the first surgery so there is no way i wil go back to him he also almost kille dme putting an NG tube in via a general but the pain doc anesthtist stopped the procedure.
So cut happy surgeon is off the christmas card list
I am stil lsuffering fromt he svere headaches be they spinal or concussion.
I have also halved my nortryptiline dose and stoped th eimmovane and aropax in the last 2 weeks.
I have also seen the pain psych who saw me 6 years ago when I was in pain and also starte dth evisit off ith saying I had a checkered history with my treatment her goal is to restor emy faith teach relaxation and TM.
I am scheduled to see a psych as well in 2 weeks as well as my pain doc. Not to keen on the psych but hey will talk with her.
Since my complaint re my treatment lets say that I am now gettign some help, for the first time.
Another goal I have is to go back to the guy that caused my inital surgery problems until he admits fault, I have time and insurance and will succeed,
I have doen a lot of research on site sre my pain blind tests and us eof placebos and see that the american pain society find sit abhorrnet, I also have found that here in NZ that they must get written consent for proecures none of which my old pain doc did.
I am no longer angry, but I will complain so that he never does this again and treats people in pain with such constempt and unprofessionally and also doesnt treat their pain, eg no compassion
cheers
debs
lets say teh contrast between the old one and new one are out of sight. I am still considering formalising a complaint against the foreign doctor who treate dme abhorrently and obtaine dno writtten consent for any of his procedures and effectively used me as his guinea pig. I will do this in part to ensure that noone else has to go throught what I went through and maybe to ensure he doesnt stay in New Zealand.
I have gone back and have had good success with neurontin and I am only on 600 mg a day so I hope that with that increaisng I will be able to drop my morphine.
I have also made it very clear that my intention is to have a SCS or pain pump, but they have onoy done scs for angina pain in anotehr hospital clos eby, and maybe 2 to 3 pain pumps in th ehospital I am at now. I have said that this is my expectation as th epain meds cause me such sever cosntipation that I cnat cope anymore.
I have also gone to have a gastrocpy to see if i had an ulcer, what they have seen is a lot of bile and I am unsure why, I saw this sugreon re the cosntipation and his answer was to remove my large bowel and that would fix it, I sai dno I would rather have the pain treated. He was th eperson who left me in the position int he forst place from the first surgery so there is no way i wil go back to him he also almost kille dme putting an NG tube in via a general but the pain doc anesthtist stopped the procedure.
So cut happy surgeon is off the christmas card list
I am stil lsuffering fromt he svere headaches be they spinal or concussion.
I have also halved my nortryptiline dose and stoped th eimmovane and aropax in the last 2 weeks.
I have also seen the pain psych who saw me 6 years ago when I was in pain and also starte dth evisit off ith saying I had a checkered history with my treatment her goal is to restor emy faith teach relaxation and TM.
I am scheduled to see a psych as well in 2 weeks as well as my pain doc. Not to keen on the psych but hey will talk with her.
Since my complaint re my treatment lets say that I am now gettign some help, for the first time.
Another goal I have is to go back to the guy that caused my inital surgery problems until he admits fault, I have time and insurance and will succeed,
I have doen a lot of research on site sre my pain blind tests and us eof placebos and see that the american pain society find sit abhorrnet, I also have found that here in NZ that they must get written consent for proecures none of which my old pain doc did.
I am no longer angry, but I will complain so that he never does this again and treats people in pain with such constempt and unprofessionally and also doesnt treat their pain, eg no compassion
cheers
debs
Shoreline
07-05-2005, 04:12 PM
Hey Deb, Have you contacted medtronics, the maker of most pumps and most SCS, to see if they have the name of a doc that is certified by medtronics for the implant and maint in NZ. It's a multi billion dollar biz and I can't imagine New Zealand without . Certainly Australia if that's possible.
You really ought to try that recipe for Yakima fruit paste, I'm still amazed by it. You have to find the right dose, but contstipation has always been an issue, even with the pump.
Alot of folks have good successs with neurontin. I've seen folks take as much as 3600 mgs a day. Most can tolerate it up to a point and then have to back down to the previous dose they tolerated, your brain will let you know when you have reached the max dose without feeling dopey. Things like forgetting why you went in the bathroom. LOL
As fa as blind tests, what your doc did was above and beyond and defeats the purpose of ding a plecebo trial. The idea would be to convince a patient they just got a very large dose of a potent med, not be a jerk and loose any possible pych effect by creating such a hostle atmosphere :nono: . So if he was doing a plecebo injection, he blew it with his demeanor. Medtronics actually sugestes they do a placebo trial where the first dose or med is saline but some docs don't like to needlesly do a lumbar puncture to prove a point.
I am glad you seem to be heading down the right road. I've called medtronics several times to ask questions, if you guys don' t have a rep in your country, it may give them incentive to come to NZ, teach a few docs about these devices and help them get started sounds like good international marketing for a US made, but international company.
Dig deeper and find out who is doing them In your country,o the closest point in Aus. someone has to be managing them if they implanted any. Which may leed you further in the right direction.
Go- Deb- GO!!!
Do they use the expression the squeeky wheel gets the grease in NZ. Unfortunately, too many people are told they just have to live with dibilating pain and do so for years, when it's just not true. It's simply one or a couple docs opinion.
I've had at least a dozen PM docs, surgeons and PM psychologist during the first 7 years tell me I just had to learn to live with it and if I used their "method" I would be fine. :rolleyes: I tried it, if part of what they had to offer worked, I would hang on to that and pitch the rest as I moved on.
Take care, Dave
You really ought to try that recipe for Yakima fruit paste, I'm still amazed by it. You have to find the right dose, but contstipation has always been an issue, even with the pump.
Alot of folks have good successs with neurontin. I've seen folks take as much as 3600 mgs a day. Most can tolerate it up to a point and then have to back down to the previous dose they tolerated, your brain will let you know when you have reached the max dose without feeling dopey. Things like forgetting why you went in the bathroom. LOL
As fa as blind tests, what your doc did was above and beyond and defeats the purpose of ding a plecebo trial. The idea would be to convince a patient they just got a very large dose of a potent med, not be a jerk and loose any possible pych effect by creating such a hostle atmosphere :nono: . So if he was doing a plecebo injection, he blew it with his demeanor. Medtronics actually sugestes they do a placebo trial where the first dose or med is saline but some docs don't like to needlesly do a lumbar puncture to prove a point.
I am glad you seem to be heading down the right road. I've called medtronics several times to ask questions, if you guys don' t have a rep in your country, it may give them incentive to come to NZ, teach a few docs about these devices and help them get started sounds like good international marketing for a US made, but international company.
Dig deeper and find out who is doing them In your country,o the closest point in Aus. someone has to be managing them if they implanted any. Which may leed you further in the right direction.
Go- Deb- GO!!!
Do they use the expression the squeeky wheel gets the grease in NZ. Unfortunately, too many people are told they just have to live with dibilating pain and do so for years, when it's just not true. It's simply one or a couple docs opinion.
I've had at least a dozen PM docs, surgeons and PM psychologist during the first 7 years tell me I just had to learn to live with it and if I used their "method" I would be fine. :rolleyes: I tried it, if part of what they had to offer worked, I would hang on to that and pitch the rest as I moved on.
Take care, Dave
Torley
07-05-2005, 05:28 PM
Hiya Dave
yes they do use the experession the squeaky wheel gets the oil, and thats what I intend to be, for 6 years they didnt help me and in fact my new pain doc said who has reviewed your drugs in the last few years I said noone, I tire dfor 2 yeas to get an appt with u guys he gulped. In fact I am sure my primary doc never requested and appt with them so he is now sacked!!!
A good point re medtronics, I hadnt thought of that, I will get in touch and yes they need to teachotheres here in NZ how to do it, I know Aussie do heaps but not here, I suspect its due to the cost of it. The cist I have heard here for a SCS is 26 K
I have bought some figs and so wil try these and see then the paste, but there no way I will have my bowel removed , lol some surgeons just want to make money I feel.
I am also going to see a GI and a neurologist in the next week or so to discuss options
On the final note, I am visualising what I will do when I see the pain doc who caused me grief, he must be very worried as he knows he stuffe dup. I also know now that I have my notes that he has taken out the tests and drugs that he used and results a bit naughty really. I will when I see him stare him down and I may also rank him to his face at -2 out of 10 and tell him perhaps he needs to remove himself from th epain service. I think if he did that then I may consider not complainign, but I doubt he will due to his ego so I may for satisfaction complain and then he can feel some pain that he has caused people like me
Debs
yes they do use the experession the squeaky wheel gets the oil, and thats what I intend to be, for 6 years they didnt help me and in fact my new pain doc said who has reviewed your drugs in the last few years I said noone, I tire dfor 2 yeas to get an appt with u guys he gulped. In fact I am sure my primary doc never requested and appt with them so he is now sacked!!!
A good point re medtronics, I hadnt thought of that, I will get in touch and yes they need to teachotheres here in NZ how to do it, I know Aussie do heaps but not here, I suspect its due to the cost of it. The cist I have heard here for a SCS is 26 K
I have bought some figs and so wil try these and see then the paste, but there no way I will have my bowel removed , lol some surgeons just want to make money I feel.
I am also going to see a GI and a neurologist in the next week or so to discuss options
On the final note, I am visualising what I will do when I see the pain doc who caused me grief, he must be very worried as he knows he stuffe dup. I also know now that I have my notes that he has taken out the tests and drugs that he used and results a bit naughty really. I will when I see him stare him down and I may also rank him to his face at -2 out of 10 and tell him perhaps he needs to remove himself from th epain service. I think if he did that then I may consider not complainign, but I doubt he will due to his ego so I may for satisfaction complain and then he can feel some pain that he has caused people like me
Debs
Torley
07-15-2005, 06:12 AM
well
the new pain doc is onto it. I now have a psyhiatrist and pyshologist appt, I am at physio due to my head injury. I have stoppe dpaxil, immovane and halved the notryptiline. I must say that its hard getting off the paxil it has nasty side effects, dizziness tiredness head spins etc. I wont be taking that again will stick with TCa's
I have now been able to get almost back to my premed state before the epidural block and head injury. I go back to see my pain guy next Monday 25th and I will be askign about the next stage being the intercostal block an increase in neurontin and a pain pump.
I did some research and medtronics have an office in Auckland, I will be pushing fo rhim to learn to do this or someone else as I wont off the oral painmeds.
Havent been to a psych before not sure if I am that keen, saw the psychologist aweek or so back and they are looking at relaxation techniques and TM. She staret doff by saying she needs to build my trust as I have had a pretty raw deal at the hospital.
I havent worked out what I am going to say to the ol dpain doc if I see him. I may just stare him out and tell him he needs to develop some compassion especially if he is workign in pain.
Debs
the new pain doc is onto it. I now have a psyhiatrist and pyshologist appt, I am at physio due to my head injury. I have stoppe dpaxil, immovane and halved the notryptiline. I must say that its hard getting off the paxil it has nasty side effects, dizziness tiredness head spins etc. I wont be taking that again will stick with TCa's
I have now been able to get almost back to my premed state before the epidural block and head injury. I go back to see my pain guy next Monday 25th and I will be askign about the next stage being the intercostal block an increase in neurontin and a pain pump.
I did some research and medtronics have an office in Auckland, I will be pushing fo rhim to learn to do this or someone else as I wont off the oral painmeds.
Havent been to a psych before not sure if I am that keen, saw the psychologist aweek or so back and they are looking at relaxation techniques and TM. She staret doff by saying she needs to build my trust as I have had a pretty raw deal at the hospital.
I havent worked out what I am going to say to the ol dpain doc if I see him. I may just stare him out and tell him he needs to develop some compassion especially if he is workign in pain.
Debs
Shoreline
07-15-2005, 01:22 PM
Hey Deb, That's great Medtronics has a rep in Aukland, That is a pretty good indicator there are docs trained to implant and manage pumps and stims in the area, Did you get to talk to the nmmedtronics rep? I've talked to both corportate HQ and our local rep prior to the pump and since the new synchromed 2 came out.
The aukland rep will know who in your area if anyone is certaified by medtronics. Managing a pump is just as important as implanting it properly. The implant only took an Hour, but adjustments and adunct meds are the time consuming part. Is traveling to Aukland a posibilty,How far is it from where you live? Any friends or family you can stay with while they get you in and start the adjustment process.
Adjusting a pump can take months to fine tune but can certainly be adjusted to manage the worst of the pain in a matter of weeks if you don't have a problem with side effects. With the new pumps you may be ale to go as long as 6 months before needing a refill depending on the concentrationn of morphine per ML and the flow rate. When they switched me from morphine to Dilaudid my refill interval went from 28 days to 85 days. but that's with the old pump that has an 18ml resevoir, the new one has a 40ml resevoir, so my refill interval would be more than doubled with the new version of the pump.
I actually like my shrink. He's my guy to bounce medical questions off of, talk about new policies and treds in manged care and. It's not like he has control over my life or my PM, He's simply my gy that I talk to about whatever I want, It's my dime so I spend that time the way I want. Bio feedback is pretty cool when you can actually see and measure the changes you can make. I could dramatically reduce my level of pain while doing it, but when you have to come back to the real world and deal with kids or family or a job or whatever, it's hard to stay in that completely relaxed state.But it's another tool to have in your bag if your having a flair that you can't manage other ways.
Do be careful discontinuing Paxil, It has a horriable reputation in the states to discontinue. If you have to go super slow, that's what you have to do.I've met folks it took 6 months to DC so don't try to be tough and rush through it. Discontinuing Paxil abruptly can cause serritonin syndrome, land you in the hospital and be life threatening. It's always amazined me how any doc in any specialty will through these psych meds at people and not worry, but when it comes to pain meds they act so foolish. Let a doc try to discontinue Paxill in 10 days and then determine how freely they want to dispense it.
It sounds like things are moving and in the right direction, keep me posted and keep hangin n there.
Cheers, Dave
The aukland rep will know who in your area if anyone is certaified by medtronics. Managing a pump is just as important as implanting it properly. The implant only took an Hour, but adjustments and adunct meds are the time consuming part. Is traveling to Aukland a posibilty,How far is it from where you live? Any friends or family you can stay with while they get you in and start the adjustment process.
Adjusting a pump can take months to fine tune but can certainly be adjusted to manage the worst of the pain in a matter of weeks if you don't have a problem with side effects. With the new pumps you may be ale to go as long as 6 months before needing a refill depending on the concentrationn of morphine per ML and the flow rate. When they switched me from morphine to Dilaudid my refill interval went from 28 days to 85 days. but that's with the old pump that has an 18ml resevoir, the new one has a 40ml resevoir, so my refill interval would be more than doubled with the new version of the pump.
I actually like my shrink. He's my guy to bounce medical questions off of, talk about new policies and treds in manged care and. It's not like he has control over my life or my PM, He's simply my gy that I talk to about whatever I want, It's my dime so I spend that time the way I want. Bio feedback is pretty cool when you can actually see and measure the changes you can make. I could dramatically reduce my level of pain while doing it, but when you have to come back to the real world and deal with kids or family or a job or whatever, it's hard to stay in that completely relaxed state.But it's another tool to have in your bag if your having a flair that you can't manage other ways.
Do be careful discontinuing Paxil, It has a horriable reputation in the states to discontinue. If you have to go super slow, that's what you have to do.I've met folks it took 6 months to DC so don't try to be tough and rush through it. Discontinuing Paxil abruptly can cause serritonin syndrome, land you in the hospital and be life threatening. It's always amazined me how any doc in any specialty will through these psych meds at people and not worry, but when it comes to pain meds they act so foolish. Let a doc try to discontinue Paxill in 10 days and then determine how freely they want to dispense it.
It sounds like things are moving and in the right direction, keep me posted and keep hangin n there.
Cheers, Dave
Torley
07-17-2005, 05:39 PM
Hiya Dave
yes I have discontinued Paxil
I did it over 2 weeks ands have been clear for 10 days now, I am so glad to be rid of it!!! what I did notice is that it was only when I got off that completely that my bowels started to work again. I am also off the sleeping tablets as well I know what you mean about the paxil and prescribing docs. Yeh let them see what it does take to get off it. I know its nasty I had head spins etc, My PM doc said give it a try he actually convinced me I was no longer depressed which he was right and didint want to give me anotehr one even tho he has now given me a referral to s shrink . lol.
I didnt know about that serotonin syndrome and will read up on it.
I havent talke dot the medtronic rep but its a good idea. i am fairly sure my first PM doc is doing th eimplants in my local hospital so I will check the ones that are only done in Auckland are the SCS so I will chekc out who is qualified and lol even suggets to my current PM doc he does this. He I have found out was top of his clas sin Australasia, which doesnt surprise me hes like the professor out of back to thte furture in a a nice way :)
Ha I will probablu tell the shrink that the old PM doc needs to learn compasison and rethink his career maybe even go back to Sweden lol. I may not hold back on him hahah.
Yeh I am feeling a lot better and will go back to work part time next week.
The pumps out of curiosity cost 26k here, what do they cost there> They only do them when all else fails and I think you need to push hard which is what I will do.It seems that the best pain killer on me is ketamine and well it cant eb taken orally so it may be my in.
I am also going to see a gastro guy next week to see what he has to say as well, and am going to go back to the neurologist I saw a few weeks back. Tell me are they better suited to understanding nerves then PM docs? tehy are better trained are they not?
Thanks
debs
yes I have discontinued Paxil
I did it over 2 weeks ands have been clear for 10 days now, I am so glad to be rid of it!!! what I did notice is that it was only when I got off that completely that my bowels started to work again. I am also off the sleeping tablets as well I know what you mean about the paxil and prescribing docs. Yeh let them see what it does take to get off it. I know its nasty I had head spins etc, My PM doc said give it a try he actually convinced me I was no longer depressed which he was right and didint want to give me anotehr one even tho he has now given me a referral to s shrink . lol.
I didnt know about that serotonin syndrome and will read up on it.
I havent talke dot the medtronic rep but its a good idea. i am fairly sure my first PM doc is doing th eimplants in my local hospital so I will check the ones that are only done in Auckland are the SCS so I will chekc out who is qualified and lol even suggets to my current PM doc he does this. He I have found out was top of his clas sin Australasia, which doesnt surprise me hes like the professor out of back to thte furture in a a nice way :)
Ha I will probablu tell the shrink that the old PM doc needs to learn compasison and rethink his career maybe even go back to Sweden lol. I may not hold back on him hahah.
Yeh I am feeling a lot better and will go back to work part time next week.
The pumps out of curiosity cost 26k here, what do they cost there> They only do them when all else fails and I think you need to push hard which is what I will do.It seems that the best pain killer on me is ketamine and well it cant eb taken orally so it may be my in.
I am also going to see a gastro guy next week to see what he has to say as well, and am going to go back to the neurologist I saw a few weeks back. Tell me are they better suited to understanding nerves then PM docs? tehy are better trained are they not?
Thanks
debs
Shoreline
07-18-2005, 02:29 AM
Hey Deb, I hate to generalize about any specifc group of docs. Some PM docs are very good neuologist and some neurologist don't consider themselfs PM docs. It just depends on where they want to fucus their pactice. The head guy at m clinic is a nerologist/ZPsychiatrist, but the anesthesiologist and physiatrist/genberal surgeon do the pump and most of the interventional procedures "Needle work"
In the staes, it seems most neuro aren't pain mnaagemnt doc or don't shoose to use opiates. Now if your talking Neurosurgeon, then I would take a neurosurgeon over an ortho surgeon for a spine problem. But it just depends on the PM docs area of specialty, any doc can reall y practice PM when all you ned is a script pad. There is actually no such major or residency program for Pain management. It' s mnore of a combination specialty of neurology, physical medicine, anesthesiology and if you have spcifc pain you may find PM that are GYN's, Reumeys, Nephrology or Urology for conditions like ICS.
Universities have a very poitical atmosphere, and In orderr to create a true pain management program, all those other programs would have to accept students into particular classes or give up funding to create a program that teaches a little bit from every medical dept I m,entioned. Obviously the anesthesiololgy resedent is going to get first crack at true anesthesia residencies before a hospital excepts a student for 6 months advanced training in each specialty.
It's basically like bringing a new sport to a school, It's either going to take funding away from all the other programs which makes those program directors mad or they have to find more funding to create a new team sport.
Pain management would entail aspects of all these different specialties, "Neurology, Physical medicine and rehabilitation, Anesthesology, Psychiatry,Rheumatology, Osteopathic medecine-DO's, even chiropractic should be part of a pain management education or residency. Since there is no specfic training available for pain magement, docs from other related fields steer towards existing Pain managemnt facilities in University hospitals. Doing a clinical residency at a hospitals pain clinic is about as close as we have to a Board certification or a fellowship program in Pain management.
AS it stands, there is no such thing as a Board certified pain management doc. If any GP is willing to treat pain, he can hang a pain management sign over his door. In that sense, a neuologist would have more eduction or experience in your nervous system and brain activity than many PM docs without a Neurology background. But that doesn't mean the neurologist will be willing to manage long term, chronic pain or call himself a PM doc.
I hope I didn't over explain the whole PM doctor thing and do hope you get a chance to do a Pump trial, perhaps that's the purpose of the shrink referral, to do the psych eval for a pump.
Take care, Dave
In the staes, it seems most neuro aren't pain mnaagemnt doc or don't shoose to use opiates. Now if your talking Neurosurgeon, then I would take a neurosurgeon over an ortho surgeon for a spine problem. But it just depends on the PM docs area of specialty, any doc can reall y practice PM when all you ned is a script pad. There is actually no such major or residency program for Pain management. It' s mnore of a combination specialty of neurology, physical medicine, anesthesiology and if you have spcifc pain you may find PM that are GYN's, Reumeys, Nephrology or Urology for conditions like ICS.
Universities have a very poitical atmosphere, and In orderr to create a true pain management program, all those other programs would have to accept students into particular classes or give up funding to create a program that teaches a little bit from every medical dept I m,entioned. Obviously the anesthesiololgy resedent is going to get first crack at true anesthesia residencies before a hospital excepts a student for 6 months advanced training in each specialty.
It's basically like bringing a new sport to a school, It's either going to take funding away from all the other programs which makes those program directors mad or they have to find more funding to create a new team sport.
Pain management would entail aspects of all these different specialties, "Neurology, Physical medicine and rehabilitation, Anesthesology, Psychiatry,Rheumatology, Osteopathic medecine-DO's, even chiropractic should be part of a pain management education or residency. Since there is no specfic training available for pain magement, docs from other related fields steer towards existing Pain managemnt facilities in University hospitals. Doing a clinical residency at a hospitals pain clinic is about as close as we have to a Board certification or a fellowship program in Pain management.
AS it stands, there is no such thing as a Board certified pain management doc. If any GP is willing to treat pain, he can hang a pain management sign over his door. In that sense, a neuologist would have more eduction or experience in your nervous system and brain activity than many PM docs without a Neurology background. But that doesn't mean the neurologist will be willing to manage long term, chronic pain or call himself a PM doc.
I hope I didn't over explain the whole PM doctor thing and do hope you get a chance to do a Pump trial, perhaps that's the purpose of the shrink referral, to do the psych eval for a pump.
Take care, Dave
zandy
07-18-2005, 06:12 AM
Shoreline,
I believe you may be wrong on the "board certified" thing...If I remember correctly, my painmanagement doc IS "board certified". But I will check his wall on my next visit (8/11) and confirm. Will let you know for sure then.
He is a psychiatrist with a degree in neurology (and maybe more, again, will check his certificates on his wall more closely and let you know).
I believe you may be wrong on the "board certified" thing...If I remember correctly, my painmanagement doc IS "board certified". But I will check his wall on my next visit (8/11) and confirm. Will let you know for sure then.
He is a psychiatrist with a degree in neurology (and maybe more, again, will check his certificates on his wall more closely and let you know).
Shoreline
07-18-2005, 09:22 AM
Hey Zandy, I apreciate you keeping me on my toes and my reseach fresh
I was just digging around to see if info I learned 5- 15 years ago is still valid. It actually seems even more convoluted now that the established specialties are offering board certification for members of that particlular specialty, whether it's anesthesiology, Physical medecine,Neurology or Do's. Each has now developed or is developing their own board certification process to obtain this title. However there is no one governing body for pain management certification.
There is no such thing as a pain manologists, It's a sub specialty practiced by many different fields of medicine each with their own guidelines and Accreditation procedure and some without accreditation procedures but equally qualified to manage specific problems.
If your an anesthesologist, you could meet the anesthesiology requirments for the sub specialty of pain management set out by the ABA, American board of ansthesiology. If your a Physiatrist, you would meet the physical medicine boards qualifications for Certification in the field of pain management, and so on. So things have changed over the last 15 years but there is still no one absolute Governing board for pain management.
If you are not already an anesthesiologist, you wouldn't be able to obtain board cerifcication by the ABA, You would seek certification by your own specialty board. No other specialty or sub specialty operates this way.
The demand for pain management and the expected credentials to go along with that practice are slowly being developed, but there is no standard used accross the board, since the area of specialty may be so different from one another. What a anesthesiologist learns and then follows the ABA guidelines for accreditation in the sub specialty of pain management is very different from what a Physiatrist learns during their education and internship in physical medicine and then there standard for accreditation in the sub specialty of pain management. The board of physical medicine and rahabilitaion standards for certification are very different than the America Board of anesthesiologists.
They obviously have completely different backgrounds which can/does leave one specialty cliaming to be the best or the most educated or better trained in this field.
Thanks for making me check myself, things do change over the years, but it seems even more confusing now when you have several, up to a half dozen specialties, offering acredidation in the sub specialty of pain mangement in their particluar field. Whether it's Anesthesiology, physical medicine , DO's or neurology. It's starting to look like pro boxing with so many different heavy wight titles and belts, you can never tell who the real champ is at any time.
I've talked to many PM docs, and there is a higher archy in specialtes. Anesthesiologis for example, came out with the first accreditation process in the sub field of pain management. They have the most drug training and interventional training so should we believe an Anesthesiologist that is cetrtified by the ABA has a better PM program, had greater requirements and higher standards for accreditation Than a Physical medicine doc certified in pain management than those set out by the Board of physical medcine or neurology or osteopathic medicine.
You are corect, they do have accreditation programs for pain management, however each program is designed to take a doc with foundations from their original specialty into the sub specialty of pain management.Which no othr field does. It' sounds more lke flying by the seat of your pants making up Accreditation as yo go, with each claiming to be the new world champ.LOL
This article explains things a little better than I.
Pain Medicine – Untangling the Web of Certification
http://www.asahq.org/Newsletters/2000/11_00/still.htm
There are also pain management associations that anyone can join for the anual fee like the AAPM or the or the APS, but they have nothing to do with accreditation and are not a governing certification body for pain management docs observed by every specialty. Please do discuss this with your doc, I'm sure it will be very enlightening as to the politics of achademia and what it would take to create an entirely new specialty that draws from a half a dozen other specialties if not more.
It's the same with the title Pain interventionalist, There are plenty that make that claim because they can do one or two interventional procedures like epidurals or Nerve blocks, but when it comes to my spine, nobody but a Neurosurgeon or an anesthesiologist who has done thousands of these procedures throughout the course of regular practice in anesthesiology is coming anywhere near my spine with a needle.
Each specialist brings something unique to their PM practice, whether it's Neurology, Psychiatry, Physical medicine, Anesthesiology or DO's. It's just up to us to match our condition to the specialty that would best serve us in the pain management field.
It's a mess that still needs work with at least a half dozen different ideas of what makes up a good PM doc and still no single Body that all PM docs can turn to and say I followed every step and standard of practice set forth by this reckognized certified body that issues accreditation to all docs practicing PM. That would blow the higher archey of those feeling more qualified, experinced and better trained. Howveer that doesn't make any particlaulr specialty the absolute for allpatients. If you need a needle i your spine, find an anesthesiologist, If the problem is headaches you best bet maybe a neuologiust, If your problem is arthritis, I don'thesologist hwill have the answers that a Rheumy would have, If the problem is ICS an internal medicine or gyn may be a better choice. This still leaves the patient going from one "Board certified" PM doc to the next untill they find one that specializes in the problem you need help with.
Thanks for making me stay on top of the mess it still is. ;)
Take care, Dave
I was just digging around to see if info I learned 5- 15 years ago is still valid. It actually seems even more convoluted now that the established specialties are offering board certification for members of that particlular specialty, whether it's anesthesiology, Physical medecine,Neurology or Do's. Each has now developed or is developing their own board certification process to obtain this title. However there is no one governing body for pain management certification.
There is no such thing as a pain manologists, It's a sub specialty practiced by many different fields of medicine each with their own guidelines and Accreditation procedure and some without accreditation procedures but equally qualified to manage specific problems.
If your an anesthesologist, you could meet the anesthesiology requirments for the sub specialty of pain management set out by the ABA, American board of ansthesiology. If your a Physiatrist, you would meet the physical medicine boards qualifications for Certification in the field of pain management, and so on. So things have changed over the last 15 years but there is still no one absolute Governing board for pain management.
If you are not already an anesthesiologist, you wouldn't be able to obtain board cerifcication by the ABA, You would seek certification by your own specialty board. No other specialty or sub specialty operates this way.
The demand for pain management and the expected credentials to go along with that practice are slowly being developed, but there is no standard used accross the board, since the area of specialty may be so different from one another. What a anesthesiologist learns and then follows the ABA guidelines for accreditation in the sub specialty of pain management is very different from what a Physiatrist learns during their education and internship in physical medicine and then there standard for accreditation in the sub specialty of pain management. The board of physical medicine and rahabilitaion standards for certification are very different than the America Board of anesthesiologists.
They obviously have completely different backgrounds which can/does leave one specialty cliaming to be the best or the most educated or better trained in this field.
Thanks for making me check myself, things do change over the years, but it seems even more confusing now when you have several, up to a half dozen specialties, offering acredidation in the sub specialty of pain mangement in their particluar field. Whether it's Anesthesiology, physical medicine , DO's or neurology. It's starting to look like pro boxing with so many different heavy wight titles and belts, you can never tell who the real champ is at any time.
I've talked to many PM docs, and there is a higher archy in specialtes. Anesthesiologis for example, came out with the first accreditation process in the sub field of pain management. They have the most drug training and interventional training so should we believe an Anesthesiologist that is cetrtified by the ABA has a better PM program, had greater requirements and higher standards for accreditation Than a Physical medicine doc certified in pain management than those set out by the Board of physical medcine or neurology or osteopathic medicine.
You are corect, they do have accreditation programs for pain management, however each program is designed to take a doc with foundations from their original specialty into the sub specialty of pain management.Which no othr field does. It' sounds more lke flying by the seat of your pants making up Accreditation as yo go, with each claiming to be the new world champ.LOL
This article explains things a little better than I.
Pain Medicine – Untangling the Web of Certification
http://www.asahq.org/Newsletters/2000/11_00/still.htm
There are also pain management associations that anyone can join for the anual fee like the AAPM or the or the APS, but they have nothing to do with accreditation and are not a governing certification body for pain management docs observed by every specialty. Please do discuss this with your doc, I'm sure it will be very enlightening as to the politics of achademia and what it would take to create an entirely new specialty that draws from a half a dozen other specialties if not more.
It's the same with the title Pain interventionalist, There are plenty that make that claim because they can do one or two interventional procedures like epidurals or Nerve blocks, but when it comes to my spine, nobody but a Neurosurgeon or an anesthesiologist who has done thousands of these procedures throughout the course of regular practice in anesthesiology is coming anywhere near my spine with a needle.
Each specialist brings something unique to their PM practice, whether it's Neurology, Psychiatry, Physical medicine, Anesthesiology or DO's. It's just up to us to match our condition to the specialty that would best serve us in the pain management field.
It's a mess that still needs work with at least a half dozen different ideas of what makes up a good PM doc and still no single Body that all PM docs can turn to and say I followed every step and standard of practice set forth by this reckognized certified body that issues accreditation to all docs practicing PM. That would blow the higher archey of those feeling more qualified, experinced and better trained. Howveer that doesn't make any particlaulr specialty the absolute for allpatients. If you need a needle i your spine, find an anesthesiologist, If the problem is headaches you best bet maybe a neuologiust, If your problem is arthritis, I don'thesologist hwill have the answers that a Rheumy would have, If the problem is ICS an internal medicine or gyn may be a better choice. This still leaves the patient going from one "Board certified" PM doc to the next untill they find one that specializes in the problem you need help with.
Thanks for making me stay on top of the mess it still is. ;)
Take care, Dave
Torley
07-18-2005, 05:38 PM
Dave
Thanks for the explanation
Here in NZ the only PM docs are anesthtists, and I dont think theres any certification hence why the swedish guy had a field day on me with his blind tests.
I agree with you , I wouldnt let an anesthtist near me who I dont trust for needlework and prolly now only the head of the dept after th espinal headace from hell
The guy I am going to see also is a neurologist, I think he may also do blocks etc, he seemd to laugh as he has seen many stuff ups from anesthtists blocks, and as he said to me when I first met him they have to fix them.
So I dont think its goign to hurt seeing him, he may be better then the PM docs maybe?
You may be right I amy have been referred to see the shrink for an eval for the pump as I no longer take the antidepressants, lol its gonna be funny as I spent 4 years trainign in that specilialsty so it will be inteesting to see there take lol and to see if they make me lie on a bed hahhaa.
Might have s snooze if they do that .
I dont think my new Om doc whose HOd will ever let the swede near me again.. What will also be intesrtesint to him is that even tho he doubled my dose of MST and fast morphine I have not taken it and maintaine dth elower dose and got rid of 3 other meds. so he will now see how serious I am to get rid of these oral meds.He will also see me when I look moderately well and will now knwo that when I present its fr a reason and not my choice at a hospital as I have told him I hat ethem people die in there.
I looked up that serotonin link, that blew me awaway, i had the flu symptoms and teh throwing up for a few days but am better now. I tell you I wount be taking SSRI's again nasty things will stick to TCA's if anything.
For those that suffer constipation the most enlightening thing for me was that getting off those meds has meant that my bowels have starte dto work for the first time in 3 years, so they are rather constipating even tho we associate morphine mostly with that
talk to you soon
debs
Thanks for the explanation
Here in NZ the only PM docs are anesthtists, and I dont think theres any certification hence why the swedish guy had a field day on me with his blind tests.
I agree with you , I wouldnt let an anesthtist near me who I dont trust for needlework and prolly now only the head of the dept after th espinal headace from hell
The guy I am going to see also is a neurologist, I think he may also do blocks etc, he seemd to laugh as he has seen many stuff ups from anesthtists blocks, and as he said to me when I first met him they have to fix them.
So I dont think its goign to hurt seeing him, he may be better then the PM docs maybe?
You may be right I amy have been referred to see the shrink for an eval for the pump as I no longer take the antidepressants, lol its gonna be funny as I spent 4 years trainign in that specilialsty so it will be inteesting to see there take lol and to see if they make me lie on a bed hahhaa.
Might have s snooze if they do that .
I dont think my new Om doc whose HOd will ever let the swede near me again.. What will also be intesrtesint to him is that even tho he doubled my dose of MST and fast morphine I have not taken it and maintaine dth elower dose and got rid of 3 other meds. so he will now see how serious I am to get rid of these oral meds.He will also see me when I look moderately well and will now knwo that when I present its fr a reason and not my choice at a hospital as I have told him I hat ethem people die in there.
I looked up that serotonin link, that blew me awaway, i had the flu symptoms and teh throwing up for a few days but am better now. I tell you I wount be taking SSRI's again nasty things will stick to TCA's if anything.
For those that suffer constipation the most enlightening thing for me was that getting off those meds has meant that my bowels have starte dto work for the first time in 3 years, so they are rather constipating even tho we associate morphine mostly with that
talk to you soon
debs
zandy
07-22-2005, 06:41 AM
Dave,
Great info as usual, much appreciated. I learn something new every day here.
Thanks,
Vera
Great info as usual, much appreciated. I learn something new every day here.
Thanks,
Vera
Torley
07-25-2005, 05:14 AM
Hiya Dave
I have been very calm about my explanation of the
Previous pain doc **** man and his treatment, called him
Unprofessional, no communication, compassion etc today to the pain
Psychiatrist as well.
I got it off my chest and was very serious in what I said.
Lol the Psych said no reason for you really to see me at all unless
You want o come back one day. She called me a strong person, which I
Am when I am well enough, but I also said his treatment was
Unethical didnt follow procedure and I wasnt informed and still am
Notes were omitted from my records etc. I said the one good
Thing was that I now have a very good pain doc and that was the
Upshot
I proceeded to tell them also the damage that. This pain do did to
My relationship and partner. I stated that I now would no longer
Involve my partner in what was happening re my treatment as the
Previous doc had done so much damage. This I agreed is isolation but
I have a clear objective and that is to get off these oral meds and
Get a pain pump t get rid of pain and adverse effects I have.
I called medtronics today and will talk to them tomorrow arvo re teaching my pain doc the pain pump and SCS. So I am onto it told him he can learn and use it on me.
I also have him doing the intercostal block in next few weeks and then possible trigger point injection whereby they can hopefully prove surgical damage etc so I am making progress
he was very impressed with me throwing away my antidepressants sleeping tablets etc and said that’s great and good I said I know grin. Now for the rest I said
They have doubled my dose of neurontin and have now yahoo changed me to oxycontin which is now subsidised.
Haha he enquired how my mum was
I said well depending on whether I get the pump etc she made need to rarck your boss up and come back he said oohh good. He said she hacked some of the nurses off by complaining to the duty manager I said well they weren’t doing there job weren’t qualified for even a pca on that ward and the hospital needs a pain ward. They don’t do anything until u arrive and you saw that when you ordered the ketamine and 8 hours later I was still sitting in regency. I said they don’t do anything until you arrive. You saw it then he said yes I was annoyed I said just like that is what they do when you are not there. I said your mission should be to keep me out of this hospital I hate it and if I end up in here my Mum comes too he quivered so you don’t want that she’s like a rottweiller!!!! She gets action unless you are the squeaky wheel it doesn’t happen.
I told him and the Psych doc today the pain pump was my objective and to prove that this is surgical damage etc and to get it sorted I wont stop until it is
Lol I said u are doing the intercostal block aren’t you not the old nasty pain doc he said.. I said u no one else I don’t trust him. I said u wont stuff up he said he has once a pneoumthorax but I said u wont with me ... he said it’s obvious in sometimes minutes. I said wont happen to me ....
He love research and as he is head of Dept I said well I have found the Medtronic’s man he wanted to know the name I said I will get that for you. I said you could learn and I could be the first here!!!!!
So all in all we are making progress heaven help the old pain doc if he ever darkens my door as I have yelled loud and clear to all who listens in that team how bad he is so I think they are watching him like a hawk.
I also know that he has as I understand learnt from this experience..... I called his ethics and procedures and informed consent into question which he breached many times and damaged my relationship and made me worse. Those psychs were appalled as he has left me with even less support then I had due to his stuff ups with my partner!!!!
I won’t forgive him AND I won’t forget him. I think I have made a loud enough noise that they will be watching him closely and now that my pain doc has seen me like my normal self he can see I am reasonable and not good in a hospital situation in pain..... I believe I have lucked in
I also have seen a gastro today he said I have seen top surgeon in NZ he knows and respects and he asked how I found him I said through him I checked u out. He will check for pancretaitis again, liver, kidney blood tests celiac disease and he thinks most likely my probs are caused by surgical damage.
Which they all think now to agree next step is to prove it via intercostal block and then to get them to write it then I make a claim and its a no fault situation and I am then ok and will get the pain pump.
Cheers
Debs
New Zealand
I have been very calm about my explanation of the
Previous pain doc **** man and his treatment, called him
Unprofessional, no communication, compassion etc today to the pain
Psychiatrist as well.
I got it off my chest and was very serious in what I said.
Lol the Psych said no reason for you really to see me at all unless
You want o come back one day. She called me a strong person, which I
Am when I am well enough, but I also said his treatment was
Unethical didnt follow procedure and I wasnt informed and still am
Notes were omitted from my records etc. I said the one good
Thing was that I now have a very good pain doc and that was the
Upshot
I proceeded to tell them also the damage that. This pain do did to
My relationship and partner. I stated that I now would no longer
Involve my partner in what was happening re my treatment as the
Previous doc had done so much damage. This I agreed is isolation but
I have a clear objective and that is to get off these oral meds and
Get a pain pump t get rid of pain and adverse effects I have.
I called medtronics today and will talk to them tomorrow arvo re teaching my pain doc the pain pump and SCS. So I am onto it told him he can learn and use it on me.
I also have him doing the intercostal block in next few weeks and then possible trigger point injection whereby they can hopefully prove surgical damage etc so I am making progress
he was very impressed with me throwing away my antidepressants sleeping tablets etc and said that’s great and good I said I know grin. Now for the rest I said
They have doubled my dose of neurontin and have now yahoo changed me to oxycontin which is now subsidised.
Haha he enquired how my mum was
I said well depending on whether I get the pump etc she made need to rarck your boss up and come back he said oohh good. He said she hacked some of the nurses off by complaining to the duty manager I said well they weren’t doing there job weren’t qualified for even a pca on that ward and the hospital needs a pain ward. They don’t do anything until u arrive and you saw that when you ordered the ketamine and 8 hours later I was still sitting in regency. I said they don’t do anything until you arrive. You saw it then he said yes I was annoyed I said just like that is what they do when you are not there. I said your mission should be to keep me out of this hospital I hate it and if I end up in here my Mum comes too he quivered so you don’t want that she’s like a rottweiller!!!! She gets action unless you are the squeaky wheel it doesn’t happen.
I told him and the Psych doc today the pain pump was my objective and to prove that this is surgical damage etc and to get it sorted I wont stop until it is
Lol I said u are doing the intercostal block aren’t you not the old nasty pain doc he said.. I said u no one else I don’t trust him. I said u wont stuff up he said he has once a pneoumthorax but I said u wont with me ... he said it’s obvious in sometimes minutes. I said wont happen to me ....
He love research and as he is head of Dept I said well I have found the Medtronic’s man he wanted to know the name I said I will get that for you. I said you could learn and I could be the first here!!!!!
So all in all we are making progress heaven help the old pain doc if he ever darkens my door as I have yelled loud and clear to all who listens in that team how bad he is so I think they are watching him like a hawk.
I also know that he has as I understand learnt from this experience..... I called his ethics and procedures and informed consent into question which he breached many times and damaged my relationship and made me worse. Those psychs were appalled as he has left me with even less support then I had due to his stuff ups with my partner!!!!
I won’t forgive him AND I won’t forget him. I think I have made a loud enough noise that they will be watching him closely and now that my pain doc has seen me like my normal self he can see I am reasonable and not good in a hospital situation in pain..... I believe I have lucked in
I also have seen a gastro today he said I have seen top surgeon in NZ he knows and respects and he asked how I found him I said through him I checked u out. He will check for pancretaitis again, liver, kidney blood tests celiac disease and he thinks most likely my probs are caused by surgical damage.
Which they all think now to agree next step is to prove it via intercostal block and then to get them to write it then I make a claim and its a no fault situation and I am then ok and will get the pain pump.
Cheers
Debs
New Zealand
Torley
07-26-2005, 05:26 PM
Hi met with my PM doc my nice new one what a difference he is a reall blessing
he has scheduled the ontercostal block for the next few weeks to narrow down the pain eg somatic viceral./ If it is viseral they will do a series of trigger point injections to see if that helps.
I also am now onto medtronics and and have told him th enext step if its found to be surgical damnage or visceral is a pain pump I am pretty clear about that.
I have told my doc he can be the first to do it in his hopsital and on me
I also saw the gastro and they are testing for celiac, pancretaitis and others but he tends to feel I am the result of surgical damage done via laprascope...... a good lesson out there for anyone who has the option of gettign there gallbladder removed is to have it done withough a laprascope there are just too many things that can go wrong
I am now in touch with th emedtronics rep in NZ and amd gettign info sent to my doc and me and him to cal lmy pain doc to explain how these pumps are done and work.
LOl I told him that dependign on teh outcome of the intercostal block and the pain pump eg whether I get them then my mother may need to make anotehr visit aka as the rottweiller to rarck the Head of Depts up he laughed. I sai dyou dont want me in your hsopital as my mum comes too lol. He laughed. I think he realises my mum does nto have caller reluctance.
cheers
debs
New Zealand
he has scheduled the ontercostal block for the next few weeks to narrow down the pain eg somatic viceral./ If it is viseral they will do a series of trigger point injections to see if that helps.
I also am now onto medtronics and and have told him th enext step if its found to be surgical damnage or visceral is a pain pump I am pretty clear about that.
I have told my doc he can be the first to do it in his hopsital and on me
I also saw the gastro and they are testing for celiac, pancretaitis and others but he tends to feel I am the result of surgical damage done via laprascope...... a good lesson out there for anyone who has the option of gettign there gallbladder removed is to have it done withough a laprascope there are just too many things that can go wrong
I am now in touch with th emedtronics rep in NZ and amd gettign info sent to my doc and me and him to cal lmy pain doc to explain how these pumps are done and work.
LOl I told him that dependign on teh outcome of the intercostal block and the pain pump eg whether I get them then my mother may need to make anotehr visit aka as the rottweiller to rarck the Head of Depts up he laughed. I sai dyou dont want me in your hsopital as my mum comes too lol. He laughed. I think he realises my mum does nto have caller reluctance.
cheers
debs
New Zealand
Torley
08-01-2005, 06:28 AM
Does anyone else get repeated outbreaks of ulcers and boils on their neck and face. I seem to get these over and over.
Its darn annoying. I take diflucan and I even try ciproxin. If I had soem acyclivar I would have taken that for the coldsores.
I have just stared back at work and its not a nive look
I am not patient waiter gonna chase up the intercostal block tomorrow.Need soem action want to get to the bottom of this pain pump etc
Also have to do some blood tests and others for the gastroenterologist
I have also enrolled to take part in a TM seminar
Debs
Its darn annoying. I take diflucan and I even try ciproxin. If I had soem acyclivar I would have taken that for the coldsores.
I have just stared back at work and its not a nive look
I am not patient waiter gonna chase up the intercostal block tomorrow.Need soem action want to get to the bottom of this pain pump etc
Also have to do some blood tests and others for the gastroenterologist
I have also enrolled to take part in a TM seminar
Debs
Torley
08-10-2005, 06:43 AM
Link between high cholesterol and pancreatitis help ?
HI
I have just been ring by my gastro specialist who was in a panic to
say my lipex is 8.82 and ldl is 6.48 should be 3.3.
I have in th elast 2 motnhs had ahead injury, been put on neurontin,
gone off paxil, immovane, and reduced nortryptiline and changed to
oxycodone. I am wondering if there are links and also with use of
enemas????Also pain does that cause stress on the heart like this and removing the gallbladder
I have never had this before. I am curious to know whether there is a
link between pain pancreatitis and cholesterol. does anyone know
been trying to decipher all the scientific stuff.
debs
HI
I have just been ring by my gastro specialist who was in a panic to
say my lipex is 8.82 and ldl is 6.48 should be 3.3.
I have in th elast 2 motnhs had ahead injury, been put on neurontin,
gone off paxil, immovane, and reduced nortryptiline and changed to
oxycodone. I am wondering if there are links and also with use of
enemas????Also pain does that cause stress on the heart like this and removing the gallbladder
I have never had this before. I am curious to know whether there is a
link between pain pancreatitis and cholesterol. does anyone know
been trying to decipher all the scientific stuff.
debs
Torley
08-20-2005, 03:00 AM
Well
my cholesterol was um lol due to 4 lattes noone told me it was a fasting test
I went to the psych today shes kinda nice. I bumped into my pain doc
and asked him WHEN is the intercostal block happening.
he said ooo thats another dept. I shook my head,
My appt was with the Pysch. I layed it on the line said my
constipation is so bad I take up to 9 fleet enemas and then maybe
maybe not I will go. MY body is no longer absoprbing vitamisn and
iron from my body and bowel. eg I have an iron count of 4 should be
24. I said that my partner has been thru enough and I risk losing
him , The previous pain doc I said has done irrecoverable damage to
our relationship and the way eh decsribe dmy pain being wind up and
controllable by my mind. This ha sleft me isolated and I can no
longer talk to him as he fears or worries what or when I will end up
in hospital. I sai I still have no plan in the ER. I said do I need
to complain get my mum to send an email it on the floor what to get
soem action, I explained taht I am running out of enrgy and am at
the point of giving up. My partner ha said last week his life is a
misery he cant plan anything ahead.He feels miserable. he also sais
taht I have so many problems eg and implied maybe I am the problem.
All of this hurt me very deeply and I know that before that botched
gallbladder surgery my life was great. I apologised for being a
burden, theres not much more I can do as I explained to them. I need
the pain implant, I have had my nerves severed , the new meds they
have given me have left me in mor epain on top of no energy, severe
anemia and low hemaglobin. I said I dont want to be back in the
hospital.
I explained I risk losing everything if something is not done, and
since the nasty pain doc I now no longer can talk with my partner, my
mum who I talk with goes away for 6 weeks and I am alone then.
I said do I need to yell, lie on the floor ??? is it just being
brushed because I am walking or I look good????
She then said that I am the only one they deal with that has or can
do the pressure job I do
I said well, I have run out of energy.So I think I will ring mum
tonight and get hd rto email the top guy and state it like it is....
It seems to be the only way, going quietly does nothing.
I said the pain is wearing me out, and enrgywise I am at teh end. I
need to resolve and sort this . She was going to talk to my pain
doc. But i think hitting the top may be the only way.
Arghhhhhhh
debs
my cholesterol was um lol due to 4 lattes noone told me it was a fasting test
I went to the psych today shes kinda nice. I bumped into my pain doc
and asked him WHEN is the intercostal block happening.
he said ooo thats another dept. I shook my head,
My appt was with the Pysch. I layed it on the line said my
constipation is so bad I take up to 9 fleet enemas and then maybe
maybe not I will go. MY body is no longer absoprbing vitamisn and
iron from my body and bowel. eg I have an iron count of 4 should be
24. I said that my partner has been thru enough and I risk losing
him , The previous pain doc I said has done irrecoverable damage to
our relationship and the way eh decsribe dmy pain being wind up and
controllable by my mind. This ha sleft me isolated and I can no
longer talk to him as he fears or worries what or when I will end up
in hospital. I sai I still have no plan in the ER. I said do I need
to complain get my mum to send an email it on the floor what to get
soem action, I explained taht I am running out of enrgy and am at
the point of giving up. My partner ha said last week his life is a
misery he cant plan anything ahead.He feels miserable. he also sais
taht I have so many problems eg and implied maybe I am the problem.
All of this hurt me very deeply and I know that before that botched
gallbladder surgery my life was great. I apologised for being a
burden, theres not much more I can do as I explained to them. I need
the pain implant, I have had my nerves severed , the new meds they
have given me have left me in mor epain on top of no energy, severe
anemia and low hemaglobin. I said I dont want to be back in the
hospital.
I explained I risk losing everything if something is not done, and
since the nasty pain doc I now no longer can talk with my partner, my
mum who I talk with goes away for 6 weeks and I am alone then.
I said do I need to yell, lie on the floor ??? is it just being
brushed because I am walking or I look good????
She then said that I am the only one they deal with that has or can
do the pressure job I do
I said well, I have run out of energy.So I think I will ring mum
tonight and get hd rto email the top guy and state it like it is....
It seems to be the only way, going quietly does nothing.
I said the pain is wearing me out, and enrgywise I am at teh end. I
need to resolve and sort this . She was going to talk to my pain
doc. But i think hitting the top may be the only way.
Arghhhhhhh
debs
Torley
09-01-2005, 07:24 AM
Well I emaile dagain the director of anesthesia and laid my case otu and what it means , eg the severe constipation and teh damge done by the old nasty pain doc and my strivign for a pain pump
I asked him yet again fr the intercostal blcok date, I was nice , and I asked him to please help me before I lose my partner etc due to this pain.
It seems it must have worked, I missed the call but they are lookign at schedulign me now at least. I told him my new pain doc was great the old one caused so much damage to me.
So I will keep you posted
I am also seeign aneurolgist next week, about my head but also about the pain he works at teh same hospital and I have seen him once before. So i figure well its worth a shot
debs
I asked him yet again fr the intercostal blcok date, I was nice , and I asked him to please help me before I lose my partner etc due to this pain.
It seems it must have worked, I missed the call but they are lookign at schedulign me now at least. I told him my new pain doc was great the old one caused so much damage to me.
So I will keep you posted
I am also seeign aneurolgist next week, about my head but also about the pain he works at teh same hospital and I have seen him once before. So i figure well its worth a shot
debs
Shoreline
09-01-2005, 08:53 AM
Hey Debs, I don't think the doc that described ppain widing up being in your head really dscribed what pain wind up actually is.
Pain wind is caused by uncontrolled pain it causes a cascade of otheer chemicals "neurtransmitters, GABA, ,NK-1, substance P which all send your NMDA receptors into overload and they start firing off randamomly and uncontrolled.
Ketamine works because it blocks the NMDA receptors, stops them from firing, sending the pain signals to your brain and the cascade of chemical changes. Yes this is going on in your brain, but it's not something you can control or mediatate to stop a specifc receptor in your brain or body from being over active. It's not something you have control of or should be able to control. It would be like saying watch this, I'm going to mentally drop my blood sugar from 120 to 60, It's impossible not a controllable thing.People ca drop the blood pressure and slow their heart rate but that's a different part of your neurological system.
So the all in your head DX is from docs that don't truly understand chronic pain, all the elements involved and confuse the activity that gos on in the brain of a chronic pain patient that causes these things with something that can be controlled.
Yesterday I saw a guy on TV "Ripleys believe it or not" have a root canal under hypnosis, It's a very fancy trick, that requires great ability to meditate, and take yourself away from your body and the pain, however you can't turn into your mind and meditate like that and live a normmal life, at some point you have to cme out of that trance and interact with the real world.
He did well for the first 40 minutes and eventualy screamed when he lost the ability to control the pain. This was like a zehn yoga master that spent weeks prepairing fo this and the hypnosis was done by the dentist that truly believes in the power to escape external sensation by turning completely inward or by leaving your body somewhat through guided imagry, yoga techniques and hypnosis. Unless you are able to live and function in that kind of hypnotic state, is the only way your could control all your pain without meds for any length of time.
Sorry I haven't posted alot lately, been trying to get things taken care of in my part of the world. I hope the next block brings some relief, and you find some answers to the head injury and things work out with your partner.
I'm not always great about returning to long threads so you might want to start a new one if you can't seem to get my attn here.
Take care, Dave
Pain wind is caused by uncontrolled pain it causes a cascade of otheer chemicals "neurtransmitters, GABA, ,NK-1, substance P which all send your NMDA receptors into overload and they start firing off randamomly and uncontrolled.
Ketamine works because it blocks the NMDA receptors, stops them from firing, sending the pain signals to your brain and the cascade of chemical changes. Yes this is going on in your brain, but it's not something you can control or mediatate to stop a specifc receptor in your brain or body from being over active. It's not something you have control of or should be able to control. It would be like saying watch this, I'm going to mentally drop my blood sugar from 120 to 60, It's impossible not a controllable thing.People ca drop the blood pressure and slow their heart rate but that's a different part of your neurological system.
So the all in your head DX is from docs that don't truly understand chronic pain, all the elements involved and confuse the activity that gos on in the brain of a chronic pain patient that causes these things with something that can be controlled.
Yesterday I saw a guy on TV "Ripleys believe it or not" have a root canal under hypnosis, It's a very fancy trick, that requires great ability to meditate, and take yourself away from your body and the pain, however you can't turn into your mind and meditate like that and live a normmal life, at some point you have to cme out of that trance and interact with the real world.
He did well for the first 40 minutes and eventualy screamed when he lost the ability to control the pain. This was like a zehn yoga master that spent weeks prepairing fo this and the hypnosis was done by the dentist that truly believes in the power to escape external sensation by turning completely inward or by leaving your body somewhat through guided imagry, yoga techniques and hypnosis. Unless you are able to live and function in that kind of hypnotic state, is the only way your could control all your pain without meds for any length of time.
Sorry I haven't posted alot lately, been trying to get things taken care of in my part of the world. I hope the next block brings some relief, and you find some answers to the head injury and things work out with your partner.
I'm not always great about returning to long threads so you might want to start a new one if you can't seem to get my attn here.
Take care, Dave