Re: Arachnoiditis-HELP

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Posted by ccf neuro M.D. on May 25, 1997 at 20:19:09:

In Reply to: Arachnoiditis-HELP posted by Donna Sawatzky on May 14, 1997 at 01:02:33:

: I have been disabled since 1989 (age 43). I've had two back surgeries, both for ruptured disk at L4-5. I have received diagnosis' from two separate doctors (one orthopedic surgeon, one neurosurgeon) of arachnoiditis. I have also been diagnosed with severe foraminal stenosis at L4-5/S1, collapsed disk spaces on several levels, foot drop and bulging disks at other levels. I have the electric shock type pains, numbness, tingling, muscle spasm, and terrible muscle cramping from lumbar region into toes. I wear a dorsaflexion brace.
I have been told to go home and "learn to live with the pain". If anyone was subjected to this type of pain, they would never give that advice. The pain is severe, chronic, intractable. I've had a dorsal column stimulator placed. However, it provides only minimal relief. I have been unable to locate a doctor locally who is even willing to take me as a patient because of this diagnosis'. Some doctors I talk to know what arachnoiditis is, others have never even heard of it. I need help. I cannot continue to live with this level of pain. I can't sit, stand, walk or move around without a terrible increase in pain.
I've been told, "no more surgery at all", it would only worsen my condition. I've tried tegretol, dilantin, desyrel, soma, fenprofen, lodine, and talwin nx. Nothing seems to make the pain bearable. I'm worn out from dealing with the pain. My normal pain level is 5 to 6 on a 10 scale. However, the last few months it has been at about an 8. Any suggestions? Why is it physicians are more than reluctant to treat a patient with a chronic condition? I don't understand. I need
help and all I find is another brick wall to beat my head against. I want my life to be more nearly normal. I know I will never be well, but surely there is some way to improve the quality of my life. I don't know where to turn any more. Please, can you help me. I have also made a friend here in the area who has arachnoiditis and is having the same difficulties finding treatment. So, I am not alone. And, I'm sure there are many, many more people in my situation. Any help you might be able to offer would be greatly appreciated. Thank you in advance for your time.
Donna Sawatzky

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Donna, There are few conditions more difficult to treat and more exasperating to both doctor and patient than arachnoiditis. The result of scarring and entrapment of nerve roots secondary to surgeries performed in the area typically results in the extremely persistent, agonizing pain you describe so well. There are no magic answers to your question, as I'm sure you realize. It sounds as if a good faith effort has been made to treat your condition at least in terms of drug therapies. You have been on an anticonvulsant medication, antiinflammatory medication, and a tricyclic antidepressant, all of which are reasonable options. In addition to trying other medications in these same classes, separately or in combination, some other less often considerd options include Neurontin, a new anticonvulsant drug with minimal side effects and in essence no drug interactions, and mexilitine, an oral version of novacaine (lidocaine) that literally sedates or anesthetizes the affected nerves and may dull the pain. It is very easy for someone to tell you to "live with the pain"--- since they don't have to live with it. Unlike many other chronic pain conditions which are as much or more greatly psychiatric than organic, arachnoiditis is a well recognized essentially purely organic chronic pain syndrome. The best long term approach is a pain management program that incorporates drug treatment, and has other more aggressive invasive treatment options if these all fail. Such options can include injections of cortisone and anesthetic epidurally around some of the affected nerve roots, and even options as extreme as cingulotomy, an operatyion where the cingulate gyrus of the brain, which is involved in generating the emotional agonizing sensations associated with chronic pain, is cut. This does not get rid of the pain, but usually makes it more psychologically bearable. You need to find a very patient and very committed physician, preferably one who specializes in pain management and either is capable of administering various invasive
treatments or is hooked up with an anesthesiologist or other doctor who can do these sorts of things. I do agree with the opinion apparently rendered to you that any additional surgery in this setting is unlikely to provide benefit, and, in fact, may make the situation WORSE!! There is an old neurosurgical addage that states "Remember, no matter how bad someone's back pain is, you can always make it worse by operating." Thus, I would steadfastly urge you to avoid the temptation to go "doctor shopping" until you find one that is willing to operate on you. I would recommend you get to the nearest large teaching hospital or medical center near you and try to find a good pain management physician. I would stick with one person, and work with her or him. If you are near the Cleveland area and would like to be seen by a member of our pain management team, you could call 1-800-223-2273 and ask to be connected to the pain management center (Sorry, I don't know the extension off the top of my head). I hope this
information is at least a little helpful, and I sympathize with the difficulty you face both in dealing with this problem on a daily basis and in finding someone willing to try and tackle it with you medically. Good Luck.

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