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AnonymousUserAAnonymousUser Posts: 49,578
Is anyone familiar with arachnoiditis or been diagnosed with it? Does anyone know what causes this and if it can get worse with time? My MRI showed scar tissue and CT/myelogram said, "possible arachnoiditis should be considered." ANY information is much appreciated!!



  • Arachnoiditis is inflammation/scarring of the arachnoid membrane of the spinal cord. Can be caused by previous surgical scarring. There is no "cure", only symptom management. Meds, injections(which can cause further inflammation sometimes(, and possibly spinal cord stimulator. Yes, it does get worse with time.

    I suggest that you do not concentrate on this diagnosis and concentrate on whatever your CT said is "fixable." I have researched this one a bit, and would not want my doctor to focus on this diagnosis as they might blame every symptom on it and not be willing to do further surgery that might be warranted. Also, if you concentrate on this diagnosis, your insurance company is going to perk up their ears-many people with this diagnosis are just told they have to live with it and get a spinal cord stimulator. A good percentage of people with true arachnoiditis end up on disability.

    Focus on what you can fix. If you address those problems it may be that arachnoiditis is not really a possibility. Do you have "fixable" problems?

    This post may seem very blunt, but I myself refuse at this point to be diagnosed with this. I want to fix what's fixable THEN sort out what's left.
  • I had three back surgeries and the last one helped. I had it on 1-10-05. I felt better and walking normal again. I had DDD, Narrowing of the spine, and spondlothesis. My surgeon did a PLIFF fusion at L4-5 with a redo fusion at L5-S1. Also, I have pedical screws. I say about 6 months into the fusion I started having a different kind of pain. my skin over lower back got worse. I exhausted pain management and went to the Mayo Clinic in Scottsdale, AZ. When I went through there..all week they thought it was Myalgia. I had brought my MRI I had done on 2-14-2008 but did not read it as the doctors where looking at it when I was in their office.

    I am currently taking Soma 350 mg (3x a day), Neurontin 800 mg (4x a day), Lorcet 10/650 mg (4x a day), and Relafen 500mg (2x a day). I also take a Calcium Supplement w/ Vitamin D because my blood work showed my Vitamin D Diff.

    After I got home, the doctors read my films and found my spinal canal is widened at mid L4-5 - Upper Sacral, which they said that was Arachnoiditis. No one could tell me what is was..but only the Internet. I heard from a friend that the Laser Spine Inst in FL was the best. I made appointment with them at their office in Scottsdale, AZ as it was closer for me. I saw them recently and they had to order a new MRI. The next day was MRI discussion with their head surgeon.

    He told me there was no cure and he talked really calm to me. He said there was no surgery or procedure they could do to free the nerves. My MRI was scanned into their computer and he showed my mom & I in detail. He showed me the bundles of nerves are stuck together outside of the spinal canal on both sides. This is where the nerves cannot move freely. Also, the Arachnoiditis is pinching my spinal cord. He said I need to be mobile as much as I can or I could end up in a wheel chair. He suggested PT and really work water therapy. He made some suggestions to my pain doctor..they need to add a pain release medication. He said the only thing they can do is treat this back disease with pain medications.

    I was upset they could not help me but he told me I had to accept it and do not over do it. He said no to Epidurals. Injections were okay as they do not hit the spinal canal. Stay away from hitting the spinal canal as it can paralized me and make the pain worse.

    I also went to Texas Tech International Pain Center in Lubbock, TX. I saw a pain doctor and he said no steriods, epidurals, and anything that messes with the spinal canal as it will paralized me or make the pain worse. He checked my reflex in both knees and they did not move..scared me. They told me to put a gown on to do a head to toe nerve exam. Found I had lost motor skills, and some feeling in my lower back. He said I also had nerve damage in lower back, SI Joint Disease, Facet Joint Disease, and Spondloitis. He is going to make suggestions to my pain doctor on putting me on a different kind of pain medication, time release pain medications, does not like Soma..suggest a different kind of muscle relaxer, and the doctors need to be very careful me.

    I told him I had two Neurolysis to burn scar tissue off and he said I was lucky I am not in a wheel chair now. I have been through a spinal cord stimulator trial (did not help) and a morphine pain pump trial (developed complications. I had developed spinal headaches that were severe. I had this in Sept and it took me a long time to get over it. The pain doctor asked me if my pain got worse after the procedures I had and I said yes. Be very careful and go to a good doctor.

    I hope this helps. I am keeping a diary of my pain so I show my pain doctor..This can tell my pain doctor to adjust my medications.
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