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Arachnoiditis Sufferers User Group
Competent Doctor's
About This Group:

Arachnoiditis is a rare chronic neuropathic disease that has no cure. If you are looking for others who have this disease, you have found the right place. Take a moment to tell your story. Together we can help each other in our journey with Arachnoiditis.

Founded by mummy3too on July 30, 2010
26 members
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Competent Doctor's

Does anyone know of any GOOD and COMPETENT Specialist's somewhere in the western USA States?  I've had this disease since 1996 and it has progressively gotten worse.  I don't even remember what it's like to not be in pain.  I'm in CA and I can't even tell you how many times I've had to educate so called "specialists".  Frustrated and Urgently Need Help.  Thank you in advance for info!!!
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1322157_tn?1279660281
I found this info (a response to someone's question regarding Arachnoiditis) on the medhelp site. It was written for someone else but at least it has some info that points us in a direction of doctors who may teat this disease. Maybe by calling these numbers, we might find someone close to home who can help! It is from a year or so ago - but I figured it is worth a try. Let me know if you call.... Mum

Dear Shirlene, it sounds like you have had a very tough time with your back.   The brain and spinal cord is covered by 3 different membranes (called �meninges�):  the dura, the arachnoid  and the pia mater.   The arachnoid membrane lies is the middle membrane.  Immediately beneath the arachnoid membrane is the subarachnoid space where the spinal fluid is located, which bathes the brain and spinal cord..  In arachnoiditis, there is proliferation of connective tissue resulting in thickening of the arachnoidal membranes and adhesions between the arachnoid and the dura ( which is the outer membrane).   In some cases the subarachnoid space is partially obliterated.  In severe cases, the thickened arachnoid membrane can squeeze and strangulate the nerve roots as they exit the spinal cord.  The main symptom of arachnoiditis is pain, but there may also be weakness and sensory changes in the extremities. The etiology of arachnoiditis can sometimes be traced to a subacute infection of the meninges/membranes.  It can also occur following spinal procedures such as  myelograms or spinal surgeries.  Some cases have been attributed to spinal injuries but the cause and effect relationship of this is less clear.  In many cases, though, no precipitating factor is found.   Treatment for arachnoiditis is very difficult.  Occasionally, steroids are given , either orally or by injection into the epidural space in the back, but it usually not beneficial.  In very special cases, where the arachnoiditis is very localized, surgery can be tried to remove the adhesions. Your back problem is very complicated and unfortunately, I have no immediate answers for you.   Going to a Pain Management Program is a very good idea.   If you would like to come to the Cleveland Clinic Spine Center for a second opinion, you can call (216) 444-2225.  I encourage you to contact The Back Association of America who has an information packet on  Arachnoiditis  and well as referral servies and support group information.  Their address is :  PO Box 135, Pasadena MD 21123-0135. Contact person:  Margaret Hill, Phone (410) 255-3633, Fax(410) 255-7338.  Good luck to you.   This information is provided for general medical education purposed only.  Please consult your physician for diagnostic and treatment options of your specific medical condition.
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1322157_tn?1279660281
I also found the name of this Doctor in La Jolla, Ca - I found this info in another post.

In San Diego, Dr. Moon in La Jolla, is one of few doctors that has dealt with arachnoiditis before.

I believe he is a pain management Dr but if he is familiar with Arachnoiditis, he should be able to help... Mum
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