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Torley 05-22-2005 03:52 AM

Dave can you share your wisdom with me
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

Shoreline 05-22-2005 05:30 AM

Re: Dave can you share your wisdom with me
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.
reply continued on next post

Shoreline 05-22-2005 05:32 AM

Re: Dave can you share your wisdom with me
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. ;)

Torley 05-22-2005 04:19 PM

Re: Dave can you share your wisdom with me
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 couldnít eat lie down pain went up . they then did 2 ERCPís 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

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 didnít 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 didnít 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 donít 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

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 05:00 AM

Re: Dave can you share your wisdom with me
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.
[B]Chronic Pain Pathways[/B]
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.

[B]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.[/B] 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.

[B]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[/B]. [B]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[/B].

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 05:33 AM

Re: Dave can you share your wisdom with me
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


Shoreline 05-23-2005 06:07 AM

Re: Dave can you share your wisdom with me
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.

[B]With careful use, other NMDA receptor-blockers such as ketamine can undo at least some of the damage done by chronic pain.[/B] 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. [B]In patients who have become tolerant to opioids, these drugs can often restore sensitivity, even to small doses. [/B] 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. [B]However, GABA-agonist medications such as baclofen are among the drugs being investigated for GABA-like pain-relieving effects. [/B]

As new findings about the various elements of the antinociceptive system have emerged, a number of other drugs are being reevaluated for analgesic potential. [B]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. [/B]

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 06:50 AM

Re: Dave can you share your wisdom with me
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 didnít 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 didnít 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 donít 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


Shoreline 05-23-2005 12:28 PM

Re: Dave can you share your wisdom with me
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. Itís 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 wouldnít 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 fusionís 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 didnít 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 donít 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 didnít come close to the relief that 12 mgs of Intrathecal morphine provided. I couldnít 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

Torley 05-23-2005 02:32 PM

Re: Dave can you share your wisdom with me
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
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
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


Shoreline 05-24-2005 03:47 AM

Re: Dave can you share your wisdom with me
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.


Torley 05-24-2005 05:30 AM

Re: Dave can you share your wisdom with me
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 .



Shoreline 05-26-2005 10:52 AM

Re: Dave can you share your wisdom with me
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, donít 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 donít need these meds, try prozac and everything else under the sun. Because some doc, somehwere decided It wouldnít be a good idea I was never referred to the doc I see know. They knw he used opiates and didnít 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 donít 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 wouldnít bother with codeine, Itís 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 donít know exactly what to say or where to go other than giving up is never an option.

Torley 06-06-2005 06:33 AM

Re: Dave can you share your wisdom with me
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



Shoreline 06-06-2005 09:09 AM

Re: Dave can you share your wisdom with me
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

Torley 06-06-2005 08:33 PM

Re: Dave can you share your wisdom with me
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

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



Torley 06-16-2005 07:18 PM

Re: Dave can you share your wisdom with me
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?



Shoreline 06-21-2005 12:30 PM

Re: Dave can you share your wisdom with me
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

Shoreline 06-21-2005 01:02 PM

Re: Dave can you share your wisdom with me
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.

Torley 06-21-2005 08:51 PM

Re: Dave can you share your wisdom with me
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


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