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Anyone been diagnosed with arachnoiditis after spine surgery?
Spine Health | Last Active: Sep 6 4:23pm | Replies (179)Comment receiving replies
My journey started four and a half years ago. I initially had chemo induced neuropathy and the pain/numbness/tingling progressed to just above the ankles in both legs and was just worsening. My oncologist sent me to a neurologist and he recommended a lumbar puncture to test for demyelination. That’s when the problems really started. 2 or 3 days post LP, my ears started ringing (and have never quit) along with a mild headache. This was in January 2019. I’ve have degenerative disc disease for many years. Since the initial LP my pain/numbness/tingling/cramping/etc… have progressed up through my calves, hamstrings/quads and glutes at a rapid pace. With the DDD, I have back pain. The leg issues and back pain were separate problems until early in 2023 when they both became one. That’s when the (I can’t get my bladder completely empty and not knowing when it’s time to take a dump) problem began. Between my PCP and myself, the research started then. During the progression I visited a pain clinic several times. 4 nerve blocks, 2 ablations and an epidural steroid injection only temporarily helped and actually made things worse. Our research revealed a probable arachnoiditis diagnosis. Most articles we read looked as if they interviewed me for the symptoms. Fast forward a few months and my doctor wants to do major lumbar surgery. Sadly, I live in a rural area and when I mention arachnoiditis they just laugh and say you’re on Google too much. I’m scheduled for major lumbar surgery before the holidays and I’m very concerned I’m making the wrong decision. If anyone has any information to share, I’d be grateful. I’m sorry the post turned into a novel.
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@esouppain I am a spine surgery patient and my issue was a cervical spinal cord compression. Cord compression caused me issues where my bladder would not empty completely on it's own without me forcibly emptying it. I also had muscle spasms shifting my neck and when my physical therapist realigned my vertebrae correctly, my bladder functioned correctly again. This is how I knew that my spine was causing the bladder malfunction. A doctor told me that spinal cord compression can cause incontinence of bladder and bowel, so I was experiencing early symptoms and I did not want that to progress to a permanent problem. I also had an uneven gait and walked with a limp, except when my therapist would realign my spine, I walked normally until the next spams shifted the bones again. The symptoms you describe are all consistent with a spine problem.
May I ask what diagnosis you received from your surgeon? Did they show you the imaging and describe where the problem is? Did your surgeon also have imaging done of the cervical and thoracic spine to see if there were any issues or complications there? That is a good question to ask, because the surgeon needs to discover where the problem is coming from, and if there is more than one place generating the symptoms such as having a cervical cord compression also, then lumbar surgery would not solve the entire problem by missing part of it. That is just hypothetical, since I do not know your situation, but all the problem areas of the spine need to be defined and evaluated. It sounds like an urgent situation and your surgeon wants to decompress the nerves that are causing incontinence. Nerves will die after too much time and too much pressure and this can become a permanent disability. That being said, Spine surgery is a long recovery, and surgery at the lower end of the spine is a tougher recovery than the upper end because you are bearing most of your body weight there.