Is there a list of Doctor in my area that have experience with Arachnoiditis

I am a 49 year old that had an operation on July 11th 2000, for L4-L5 disc repair/ removal, since the day after my surgery my left side has been jerking. From my mid-back down the left leg to the middle toes. Also since, I have lost sensation in patchy areas from my navel down. I was seen a N/S at UAB last Thursday and he said" I HAVE NEVER SEEN ANYTHING LIKE THIS, SOMETHING MUST HAVE HAPPENED DURING YOU SURGERY" I do not know if my problem is "Arachnoiditis Syndrome". But I know that everyone, the other (5)doctors I've seen,look at my MRI, before and after my surgery notice scar tissue, post surgically.
I am now in as much pain as I was befor the operation.
Please advise,
Phone Number :1-334-297-9000
e-mail:  WWW.***@****
I can FAX any additional information you may need.

Sheryl

[CCF Neuro[P] MD, RPS]

Dear Sheryl:

I am not sure what to advise you to do.  I am sorry to hear about the pain and suffering that you are in.  You are doing the correct thing in getting second opinions on what needs to be done.  Frankly, scar tissue is found in all surgeries, the amount may differ, but it is the body's healing process.  Post surgical archnoidits is not uncommon.  I am not sure what is causing the leg jerking.  The patchy loss of sensation I would bet is post surgical and most likely will resolve over a period of time.  I would get a couple of opinions and go from there.  You can't focus on what the surgery did or didn't do because it has already happened.  It will also wreck havoc on you psyche.

Sincerely,

CCF Neuro MD

[Sheryl Scott]

Thank you for writing back. But I question if you completly read my posting. I have had second opinions times 3. And the latest was at a research hospital, UAB Medical Center, none of them have a clue. I need to know of Doctor's in this area that has knowledge of the stated condition, archnoidits, as you stated in your reply, it's not uncommon. And since this was 26 hours post surgial. I have has this condition every hour of every day for three months. That should have been enought time for my body to have recovered.
Thank you in advance for you prompt return message.
Getting worse daily, losing bladder and bowel control now.
Yours Truly,
Sheryl Scott

[CCF Neuro[P] MD, RPS]

Dear Sheryl:

I am sorry, but I really don't know of any outstanding neurosurgeon in your area (I don't know of any terrible ones either).  That is why I did not comment.  It doesn't sound like the usual neurosurgeon who would not try and explain what is happening by what they see.  It may be a better thing to go elsewhere because maybe they know the other surgeon????   Any major medical center would have good neurosurgeons.  We often tell patients that the nurses in a given area know the best surgeons and the worse surgeons.  It might be helpful to call the neurosurgery floor at the medical center of choice and ask to speak to a nurse or rehab specialist.  In fact many rehab specialist have networks all over, and this may be a good starting point also.  Sorry, I am not much help.

Sincerely,

CCF Neuro MD

[annie]

One thing you may want to try if you're looking for a doc who specializes in Arachnoiditis, is to contact the group "COFWA" (Circle of Friends with Arachnoiditis.)

I'm not a member myself, but many people on the MGH Neuro Forum with Arachnoiditis, speak very highly of COFWA.  Their eMail is- http://hometown.aol.com/Ddzevie/index.html  (If that eMail is incorrect, try doing a websearch for COFWA and you'll find them.)  Take care!