Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 Hi Juli, I, too, was in a terrible car accident in 1988 and fractured my neck and dislocated two discs in my neck. The first thing I noticed was that it seemed to exacerbate my CMT, because I have onion-bulb neuropathy, what I call - gaint lumpy nerves - So the misalignment caused by the accident, caused me severe pain that continues to this day. So on top of the pains associated with CMT, I suffer from severe chronic pain, akin to pinched nerves EVERYWHERE! I have had a nerve block injection in the lowest part of my spine. It seemed to help. I was at a point where I couldn't sit because the nerves where being sqished in my tailbone area. And I kinda need to sit, since I'm in a wheelchair. I go to a pain management specialist once a month. I know this is only from my personal experience. But, I went to Presby Hospital MD clinic in New York about 10 years ago and the doctor there, mentioned the moriphine pump, but he said I would be so 'looped out' on drugs that I would not only be physically disabled, but the one thing I had, that I coveted, was my mind, would be slowly robbed of me by the drugs. My pain doctor now, has said that I AM past everything they try, neurotin, antidepresants (tricyclics) depakote, tegratol and on and on. So, because I can't even move because the pain is excrutiating and the ONLY alternative was opiate therapy. I am currently on a fairly large dose of Oxycontin and Klonipin which helps for spasms and pain. Oxycontin or it's cousin, MS contin are LONG ACTING medications. Oxycontin is basically the medicine compound in drugs like Vicodan, but in a pure form and come in much higher doses and can be taken orally, MS Contin, is long acting Moriphine. I had to start low and increase the dosage to where it relieved the pain so I could function, but didn't affect my brain function. You MUST be constantly monitored as to not take too much, but if I would of had that pump, who knows what would have happened to my cognition. If your cousin hasn't seen a pain specialist, that would be my suggestion. And remember you must fight for what is best for you, medically. I understand pain, it is part of who I am, I must deal with it the way I deal with living with CMT. Investigate, find out what is right for you - AND NEVER take the opinion of just one doctor when it comes to something as radical as a moriphine pump. Granted it may be the only option that does work, but check out ALL the alternatives first. Peace & love Judy g. Juli Ochs wrote: > I would like to ask a question for my cousin who is > also affected by CMT. He had a car crash a few years > ago and suffered a back injury. Since then they have > performed all types of things on him to try and lessen > the pain. They did some type of pain epidural, but > I'm thinking that I read somewhere that he shouldn't > have had that done with CMT, anyone know where I would > find that information? > Also, they are planning to put in a morphine pump into > his back. Anyone have any information about this? > Also, how could I get an email sent to him that would > invite him to join the group? > Thanks all, I've only been a member for about 4 days > and already I have learned more than I have ever known > about CMT. > Thanks!!! > Juli > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2001 Report Share Posted November 25, 2001 I would like to ask a question for my cousin who is also affected by CMT. He had a car crash a few years ago and suffered a back injury. Since then they have performed all types of things on him to try and lessen the pain. They did some type of pain epidural, but I'm thinking that I read somewhere that he shouldn't have had that done with CMT, anyone know where I would find that information? Also, they are planning to put in a morphine pump into his back. Anyone have any information about this? Also, how could I get an email sent to him that would invite him to join the group? Thanks all, I've only been a member for about 4 days and already I have learned more than I have ever known about CMT. Thanks!!! Juli __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2001 Report Share Posted November 26, 2001 Juli, If your cousin can wait until next year on the Morphine pump he may be glad he did. I read an article in " Scientific American " a couple months ago that the medication pumps (morphine pump) will be on the market at one half to one quarter their present size (and cost) by the second quarter of next year (2002) it may be worth waiting on. Dave > I would like to ask a question for my cousin who is > also affected by CMT. He had a car crash a few years > ago and suffered a back injury. Since then they have > performed all types of things on him to try and lessen > the pain. They did some type of pain epidural, but > I'm thinking that I read somewhere that he shouldn't > have had that done with CMT, anyone know where I would > find that information? > Also, they are planning to put in a morphine pump into > his back. Anyone have any information about this? > Also, how could I get an email sent to him that would > invite him to join the group? > Thanks all, I've only been a member for about 4 days > and already I have learned more than I have ever known > about CMT. > Thanks!!! > Juli > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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