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Anyone been diagnosed with arachnoiditis after spine surgery?

Spine Health | Last Active: Sep 27, 2023 | Replies (174)
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@pjf

I would like to know if anyone knows any physicians in either New York City and/or Long Island who truly know about arachnoiditis I have neurostimulator and are planning on having it removed. I have a lot of breakthrough pain and my pain management doctor is again trying to decrease the dosage. I guess with all the new rules about these drugs doctors are hesitant to give high dosages.

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Replies to "I would like to know if anyone knows any physicians in either New York City and/or..."
kenyalama | @kenyalama | May 23, 2021

Hello,
I am so sorry to.disappoint anyone with arachnoiditis. I’ve been suffering from it for twenty years. Diagnosis was confirmed by the May Clinic. It does not have cure or specific treatment and it is progressive. I am now using cane, wheelchair or electric scooter depending on the distance. It causes pelvic floor pain, severe stiffness in the. Back of my legs, partial numbness and the last few months sciatic pain on both sides. I tried pain pump many years ago. It was removed because it was not helping, PT seems to aggravate it. I now have a pain pump but for relentless trigeminal neuralgia. It is helping the TN but not the arachnoiditis. I was als diagnosed with CRPS and Rheumatoid arthritis
Anyone with so many neurological conditions?
I have and I am in very best hands : Mayo Clinic and now Baylor college of Medicine. I love and respect my doctors but this is a very difficult condition to treat. It’s almost hit or miss even for the very best .
Hang in there ! I am always hoping science will help l

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