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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: 4 hours ago | Replies (404)

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@missb

My neurosurgeon said the most plausible explanation for my symptoms is arachnoiditis or some other neurological disease. I have had too many invasive spinal procedures to count with complications and four spine surgeries. I currently have a pain pump that is not providing relief. How do I find a specialist who can diagnose my condition? I have thought I had AA for years since the symptoms explain everything that I experience. I have recent imaging that I could send to a doctor. I am desperate and in terrible pain.

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Replies to "My neurosurgeon said the most plausible explanation for my symptoms is arachnoiditis or some other neurological..."

I was recently diagnosed with AA and am trying to get an appointment with Mayo. Pain pump, from what I understand, is the gold standard treatment. Have they adjusted the dosage or changed the medication for you? I have an SCS (Abbott Proclaim) which is useless and is going to come out soon but my surgeon wants me to try another SCS trial before he does that. He showed me the AA on my MRI from two years ago. I had to have a CT for Mayo as my SCS prohibits me from MRI's. What type of doctor do you see now? Who ordered the recent imaging? It was very easy to see it on my MRI so ask them to show it to you if they "think" you have it. Either its visible and you have it or it isn't and you don't. We all spend much too much time chasing after iffy diagnoses, and I've been told by a friend who is a trauma surgeon that AA is sometimes a garbage diagnosis that doctors throw out because its untreatable and it gets them off the hook to do anything for you. I can manage life for the most part (although my ability to walk/stand is often severely limited) on my current meds, but every month I live in the fear that I will be cut off and I know that will take me out of normal living for sure. Good luck.