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    Old 05-22-2005, 03:52 AM   #1
    Torley
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    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

     
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    Old 05-22-2005, 05:30 AM   #2
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    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.
    http://www.hosppract.com/issues/2000/07/brook.htm
    reply continued on next post

    Last edited by Shoreline; 05-22-2005 at 05:42 AM.

     
    Old 05-22-2005, 05:32 AM   #3
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    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.

     
    Old 05-22-2005, 04:19 PM   #4
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    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


    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 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

    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

     
    Old 05-23-2005, 05:00 AM   #5
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    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.
    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

    Last edited by Shoreline; 05-23-2005 at 05:44 AM.

     
    Old 05-23-2005, 05:33 AM   #6
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    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

    Debs

     
    Old 05-23-2005, 06:07 AM   #7
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    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.

    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

    Last edited by Shoreline; 05-23-2005 at 06:17 AM.

     
    Old 05-23-2005, 06:50 AM   #8
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    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

    Debs

     
    Old 05-23-2005, 12:28 PM   #9
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    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. 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
    Dave

    Last edited by Shoreline; 05-23-2005 at 12:34 PM.

     
    Old 05-23-2005, 02:32 PM   #10
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    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
    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

    Last edited by debzdebznz; 05-24-2005 at 04:52 AM.

     
    Old 05-24-2005, 03:47 AM   #11
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    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.




    .

    Last edited by Shoreline; 05-24-2005 at 04:14 AM.

     
    Old 05-24-2005, 05:30 AM   #12
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    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 .


    thanks

    debs

     
    Old 05-26-2005, 10:52 AM   #13
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    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.

     
    Old 06-06-2005, 06:33 AM   #14
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    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

    cheers

    debs

     
    Old 06-06-2005, 09:09 AM   #15
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    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? 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

     
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