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Thread: Mayo Pain Clinic, anyone done it

  1. #1

    Mayo Pain Clinic, anyone done it

    Anyone gone through it? A 3 week outpatient program teaching how to live with pain and ways to stop or minimize pain reinforcement habits, stress relief etc?

    I got accepted to the program and working with the insurance to see if they'll cover it. A definite no on the airfare and room and board so it will be pricey even with coverage without coverage I may not be able to manage it but have some watches I don't wear that I'll sell.

    they detox you, no narcs, OTC pain meds, muscle relaxants or alcohol but i expect they'll let me keep my anti-spasm meds except valium.

    While the outcomes in their fancy book look good, all statistics are based on response as people leave and there is no 6 month follow-up info given.

    Wait is likely to be into next jan.

    Anyone been through it?

    Kindly,

    Bill

  2. #2
    I suspect they might not like your ketamine.

    I am a little skeptical I must confess - all the coping strategies sound like a good idea, but I don't see why eliminating medications would generally be helpful. Seems a combination of therapies would be better. But that's just me.

    Re. the stats - I wonder how many people who actually need the pain meds consent to the program - or do they get the people the meds aren't helping.

    If you do choose to go - are there any Ronald McDonald houses or something similar that you could stay? There is a social work department at Mayo - might they help you find lodging?

  3. #3
    Bill, I just remembered I had looked this up before for someone - perhaps it might be helpful to you:

    Sometimes airlines will offer discounts. Here's the info from Mayo:

    http://www.mayoclinic.org/travel-rst/air.html

    Temporary housing - appears to be free

    http://www.nazwellhouse.com/ministry.htm

  4. #4
    Thanks Tam, I'll look into these resources.

    Honestly I don't know what to think about the program, I found out I have an interview with the doctors there tomorrow/Tuesday. Thought i was in but one more interview/eval.

    As there are no other options left to me I figure I ought to try it as I am sooo weary and tired thta suicide is constantly o my mind. Upped my anti-depressants and am generally better spirits but still no pain relief.

    Can't do anything anymore, vacuumed the family room yesterday to try to help and was paralyzed with pain and spastic attacks til 4 AM this morning.

    Life si becoming less and less worth living.

    So anyway i'll give it a try.

    Re narcs/drugs there is a consideration that long term they "make" pain but i am very opiate intolerant so barely take anything anyway, relatively speaking.

    My local pain doc mentioned the same thing about giving up meds and am i prepared to do it but the alternative...

    so I'll give it a try if they'll take me. They do have a fair number of drop outs who can't/won't detox or who aren't getting anywhwere, so you're not "locked" in but subject to random drug screening and dismissal.

    Kinldy,

    Bill

    Kindly

  5. #5
    I was looking on their site - about 1/2 the people (roughly) are taking pain meds when they arrive, and apparently 9% are taking opiates when they leave. Don't know if they leave prematurely, or that's at the end of the program.

    There is a phenomenon that for some people, opiates over time can increase pain sensitivity (Opioid Induced Hyperalgesia). It doesn't happen in everyone however.

    If you're not taking much anyway, then it wouldn't be a big sacrifice for you to stop. And if some meds DO help, you could take them again after you leave I suppose.

    And cripes, no vacuuming. Dust or cook or something, not the heavy vacuum! Ow ow ow.

    Still fingers crossed for you - let me know if I can help in any way.

  6. #6
    Bill

    We all see you hurting. And trying to be normal. What happened to the ketamine. i thought you were trying that. Did it not help?

    As to Mayo's, I don't understand. Are they promising they can get rid of pain by getting you to stop taking medicines which you began because you were in pain? I would make sure any program is aimed at CENTRAL PAIN. What works for other pain may not cut it foryou.

    You kind of remind me of myself when I was ready to mortgage the house because I felt someone MUST have something for central pain. I have learned they do NOT. And you have to be interviewed to see if they will take you. I don't get it. Not much double blinding going on there.

    I don't have any magic answers, but I would make this resolution. NEVER talk about the pain at home. If you are suicidal get to a professional. Talking about it to your family scares them and makes THEM feel inadequate. Only talk about OTHERS at home and see if that works any better.
    Last edited by dejerine; 11-23-2009 at 06:02 AM.

  7. #7
    Hopefully Bill won't mind me replying here.

    He's posted about the ketamine on another thread.

    We've looked at programs such as Mayo's. They do want people to come off their meds - their belief is that people do better without meds apparently. I personally think they're full of crap on that one, but that's just me. True for some people I guess, but not all imo.

    However, these mustidisciplinary pain clinics do get a lot of results, I think, by teaching biofeedback, psychological counseling, physical therapy, and probably more stuff I'm not aware of. So it's very possible that all of this is useful.

    My personal opinion, for a lot of patients it'd probably be more useful if they combined it with effective medication, but that's just me.

    However - one could go to that program, take what they have to give - and add back medications once out.

  8. #8
    Very interesting - I did some searches on Mayo. While this pain rehab clinic seems to favor detox, one can find articles coming out of Mayo, with opposite recommendations:

    http://www.mayoclinicproceedings.com.../84/7/602.full

    Long article, but here is one section:

    NEUROPATHIC PAIN

    Neuropathic pain, resulting from a lesion or dysfunction in the peripheral and/or central nervous system, is associated with such conditions as diabetic neuropathy (DN), postherpetic neuralgia (PHN), and phantom limb pain.2 The most recently published evidence-based guidelines call for the initial treatment of neuropathic pain with TCAs, the α2δ ligands gabapentin and pregabalin, or selective SNRIs, alone or in combination.19,20 These guidelines recommend that opioid analgesics be used when first-line treatments do not demonstrate a satisfactory response.20 Opioids can also be used as first-line medications in combination with TCAs, SNRIs, or the α2δ ligands in certain circumstances (eg, to obtain immediate pain relief during the titration of a nonopioid medication to an effective analgesic dose and/or to treat episodic exacerbations of severe pain).20 Reasons for not including opioids as a first-line medication include the increased rates of both short- and long-term AEs relative to other treatments and the potential risk for misuse and abuse.20 In addition, opioids and nonopioids may be combined in rationally developed multidrug regimens that seek additive or synergistic analgesia and/or a reduced AE load by targeting multiple targets along neural pain-transmitting pathways.70 Guidelines specific for the treatment of diabetic peripheral neuropathic pain recommend the use of long-acting oxycodone as a first-tier agent, citing published demonstrations of efficacy.

  9. #9
    Hi Tam

    Thanks for pointing out the persistent and widespread confusion and contradiction which seem to emerge from various centers. Detox is a great service, but is different from pain relief.

    Here comes the wet blanket.

    alpha 2 delta ligand means the drug binds to the alpha 2 delta subunit of calcium receptors. Ion receptors are usually composed of subunits, each with a structure, which structure may be found in other ion channels, which are given greek names. Both neurontin and pregabalin cause nausea and spaciness or drowsiness, and both are having their use extended to arthritis right now.

    The first mention in the literature of pain of central origin is S. Weir Mitchell during the Civil War. However, his use of the term makes clear that it was in common use. The next big articles came from Egger, Dejerine, and Roussy in France at the turn of the century who showed that pain of central origin was linked to the thalamus. Riddoch in the 40's invented the term "central pain". Ron Tasker in the late 50's discovered that spinothalamic tract was the pathway to brain for all pain, including neuropathic pain. He also showed that in those with CP, radiostimulation of the cord in the area of the neck woudl recreate the burning sensation. Pagni (with Canavero) and John Bonica (inventor of the Epidural block) both wrote monographs on central pain. ALL of these authors stated that opiates were not effective in central pain. The NIH also has on its pamphlet web page that opiates DO NOT help central pain. Patrick Wall, editor of the Textbook of Pain and past president of the International Association for the Study of Pain, also indicated the unique resistance of central pain to opiates. William Willis and Claire Hulsebosch at UTMB, Marshall Devor (Harvard), and Bryan Hains and Carl Saab (Yale) have published on the ineffectiveness of opiates in central pain. Hains was the one who discovered that in central pain, a FETAL ion channel is produced which increases neuronal firing in those with Central Pain.

    The two diagnostic tests for central pain are, following CNS injury, a centripetal (distal) burning occurs which:

    1) displays Mitchell's delay of a half minute or so before light touch evokes the burning (whereas in peripheral nerve injury pain, light touch evokes the pain instantaneously), AND
    2) this burning pain is resistant or unresponsive to opiates


    Thus, it is a mystery to me why it keeps coming up. Were all of these former doctors completely wrong? It was the ineffectiveness of opiates in the first place which led to the realization that central pain is DIFFERENT from normal pain. For doctors now to go back to something so fundamental and try to resurrect it, is hard to understand.

    I can only conclude they are sedating patients and call that pain relief, OR that the pain being relieved is not the central pain which SCI patients may have, but rather the ordinary pain from the abnormal spinal segments. In questioning some of these people, they were simply too intimidated by their doctors and nurses to tell them that they were not helping them. At least, they were listening to them, which was more than their families were doing, and the patients sometimes needed that. Frederick Lenz (Johns Hopkins) has explained the ineffectiveness by the fact that opiates in the brain inhibit inhibitory pathways eventually making the pain WORSE.

    Peripheral neuropathy on the other hand HAS been shown to respond to opiates, although not as well as ordinary pain.


    There are far too many clinicians who are unable to distinguish pain of central origin from peripheral neuropathy, most likely because both conditions can cause burning. Burning is always an agonizing sensation and the patient may display dramatic evidence they are suffering. However, those with peripheral neuropathy, despite their agony, do not usually have as great a percentage of the body surface involved in the pain, and are therefore not as sick. Also, peripheral neuropathy often resolves over two or three years, especially with treatment. Diabetic neuropathy is very bad, but hardly in the same category with severe central pain, which, as Tasker said, can be the MOST SEVERE PAIN STATE KNOWN TO MAN.

    This month I had a nurse weep in describing the pain her mother has from herpetic neuralgia. It is so severe, her mother chooses not to wear a bra, since it is located in the spinal nerve which would go to the breast. Her mother is elderly and so going without a bra means she is too embarassed to go out in public, to church, to the store etc. She prefers nudity of the chest, so she does not wish to receive guests when her pain is on. However, the herpetic neuralgia does respond somewhat to medications, is unilateral, and is often absent for a year or more at a time. Thus, I must conclude that it is not comparable to someone who has neuropathic burning in ALL spinal segments, and occasionally in the mouth face and eyes, without ceasing, who must worry about ALL clothing everywhere, AND the touch of sheets at night, bilaterally, front, side and back. Many with prior neck surgery don't have a lot of options for sleep positions which relieve the neck. This means the face may have to bear weight, but if the face is sensitized, there is really no good option.Facial CP in high cord lesions, is also sometimes accompanied with pain from the dura, which surrounds the brain. Such a state can truly be termed torture.
    .
    Neurons are not the most numerous cells in the CNS. One must also study astrocytes and glia. The November issue of Scientific American (Neuroscience) has an article by Fields which updates us on the role of glia in pain, and also lists medications aimed at the glia. I would say based on existing knowledge, that Fields is more accurate and more current than many other sources.
    Last edited by dejerine; 11-24-2009 at 04:16 AM.

  10. #10
    Have you seen this article? Says they have discovered the

    http://jn.physiology.org/cgi/content...102/1/181?etoc

    Says the zona incerta in the subthalmic nucleus may be the problem area in central pain.

    Dejerine, I'd be very happy to continue this discussion with you, of course - may I suggest you start up a separate thread though? I'm concerned we're getting off topic in this one and hope there may be some more thoughts on Mayo. If you'd like to, I'll keep an eye out.

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