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Adhesive Arachnoiditis & the Effects on Walking
Spine Health | Last Active: Jan 30 5:32pm | Replies (75)Comment receiving replies
I was diagnosed three years ago, following surgery to remove five giant Tarlov Cysts, which had eaten through a significant portion of S1 - S3 vertebrae. (I went for 12 years with worsening symptoms of TCs and was told it was all in my head.) I had severe pain, but no issues with walking. In fact, I found some *relief* walking three to five miles per day in the heat of our Texas summers. However, in the last year, my pain has become excruciating and I lost feeling and movement in my right leg. (As someone else mentioned, AA is progressive - I only just realized this after reading Dr. Forrest Tennant's books!) I had a spinal cord stimulator implanted in October and, oddly enough, I regained feeling in my right leg.
But the stimulator has done nothing for my pain and I am still unable to walk further than the mailbox without sciatica and coccyx/low back pain. I also have trouble with balance and tripping. I still have foot drop in my right. It is so frustrating, as I was healthy, fit, and active.
At this point, neither my pain management doc nor my stimulator rep are interested in the fact that the stimulator has affected sensation in my right leg, but has not touched my pain. Also no interest in balance/tripping. Just shrugs and comments like, "It's probably just part of the disease process" or "that's not how the stimulator is supposed to work" (with regard to sensation).
I sincerely hope this is helpful to you. 🙂
Replies to "I was diagnosed three years ago, following surgery to remove five giant Tarlov Cysts, which had..."
Lauren here. Sorry u are suffering so much. I too, used to be fit & active, even as a senior. have always worked out. It's so difficult to see the decline that comes with AA. Seems that surgical intervention, can be even more risky once U have AA. Most doctors are familiar with AA, but in a very limited way only. There is a lot of loss, that comes with Arachnoiditis. However, i would see if u can find another provider that is more emphatic & interested in trying to help. Think this disease separates the good docs from the bad. Lot of people can't relate to the amount of pain & loss of function . Guess doctors are only human, but it's beyond frustrating, when they won't even listen or try to help. We look normal, so it can be so misleading. I have gained a tire around my middle from steroids. My new PCP said i should be able to lose this in about a month....thought he was joking, but he wasn't. Not sure how i can walk around, let alone lose weight. I don't mean to be discouraging, but this condition is a full time job. My symptoms keep changing, but i long for the days when i could get around, exercise, look g & actually feel good. Keep trying to find someone willing to try to help. Hate to be cynical, but seems like everyone is stressed to the max, & doctors hate to feel inadequate. Your walking limitations are not compatible with living a decent existence. I'm not recommending doctor shopping, but u have a right to expect more from your providers.
@merrysunshine Welcome! I like your handle and it brings a smile to me. Thanks for sharing your experience and that will be helpful to others who navigate a similar situation.
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the Dr's just don't know that much about it.Its very rare.They put me on Harmone pills.It does help with pain.Fish oil is good to.i wish you luck.