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Pachymeningitis: Anyone else?

Brain & Nervous System | Last Active: Apr 20 8:50pm | Replies (115)

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@jrt26

Hi @tracyb and @megmor and cc to @cgrammie2. I was diagnosed November 2016 after a mini craniotomy at UCSF in San Francisco CA. I was being treated for a meningioma in the right cavernous sinus area since June 2009 diagnosed after getting terrible shooting pains and sudden double vision (the meningioma was pressing on the Trigeminal nerve and eye movement nerve). Had gamma knife treatment twice in 5 years. Then the numbness on the right side of my face occurred with dizziness and shooting electric type pain mostly in my eyes. The craniotomy biopsy result was inflammation mostly made up of B cells all around my dura. Was on prednisone 60 mg for about 6-8 weeks taper down. Currently treated for the second time with rituximab Infusions and doing okay. Please let me know how I can help and other questions you may have.

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Replies to "Hi @tracyb and @megmor and cc to @cgrammie2. I was diagnosed November 2016 after a mini..."

Hi @jrt26 Reallt hoping we can get in touch - your story is very similar to my family members, down to meningioma in cavernous sinus, then radiation, then Pachymeningitis. Things are not going too great and hoping we could discuss what has worked for you and what specialists you see. Scary times and looking for any connections or people in similar shoes. Thank you