CIDP and arachnoid cysts

Posted by bearmom @bearmom, Jun 5 6:07pm

Has anyone with CIDP subsequently developed arachnoid cysts on their spinal cord? About one year after being diagnosed with CIDP, I started having terrible back pain. After reviewing my MRIs, my neurologist referred me to a neurosurgeon because I had arachnoid cysts compressing my spinal cord. Their best explanation is they may have been caused by having multiple lumbar punctures due to difficulty diagnosing my CIDP. Has anyone else developed arachnoid cysts after a CIDP diagnosis?

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John, Volunteer Mentor | @johnbishop | Jun 6 7:25am

@bearmom, I saw that you asked a similar question on the arachnoid cysts in another discussion but it didn't receive many responses. I found this article that mentions the explanation from your doctors that might be helpful.

"They may be congenital or acquired. Secondary arachnoid cysts are usually due to trauma, hemorrhage, inflammation, surgery or iatrogenic injury like lumbar puncture, injection of anesthetic or contrast material within the subarachnoid space"
-- Spinal arachnoid cyst: https://radiopaedia.org/articles/spinal-arachnoid-cyst

I also did a search of Connect for "arachnoid cyst spinal cord" and found a few comments from members if you want to scan through them - https://connect.mayoclinic.org/search/comments/?search=arachnoid%20cyst%20+spinal%20cord

Have your doctors suggested any treatments that might provide some relief?

bearmom | @bearmom | Jun 6 8:27am

Thank you for the articles and connection to others’ comments. I’m new here, so I wasn’t quite sure where and how to best search for this information before asking my own question. Sorry for the duplication!
I had two surgeries three days apart in July 2023 to try to remove as much as they could from T2-T10 and L1-L4. After the second surgery, I could no longer walk (again). One year prior, I was diagnosed with CIDP and was temporarily paralyzed from the neck down. I’ve had to relearn to walk twice in the last three years with the time after those two surgeries being far worse and detrimental than the first time with the CIDP diagnosis. I still require a rollator for walking and suffer with severe, chronic pain. I was really looking to connect with others that could tell me what treatments they have had.