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Pachymeningitis: Anyone else?

Posted by cgrammie2 @cgrammie2, Aug 11, 2012

We live in Tennessee and my husband has been dia, with a very rare disease called pachy meningitis he is being treated in Nash. Tn. took a long time to get a name for his diease most people and Doctors haven't ever heard of it he is looking for someone to share stories and treatments with being is has no clinical studies it is so rare! has anyone ever heard or know someone that would be willing to share information about this disease even if you are a professional neuro doctor is ok!!!

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dw79 | @dw79 | Feb 26 8:38pm

Do you know of any problems for a person with pachymenigitis to fly...this would be a 9 hour flight and am concerned of any problems this might cause....

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1 reply
cjankowski99 | @cjankowski99 | Feb 27 8:52am
In reply to @dw79 "Do you know of any problems for a person with pachymenigitis to fly...this would be a..." + (show)
@dw79

Do you know of any problems for a person with pachymenigitis to fly...this would be a 9 hour flight and am concerned of any problems this might cause....

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I get episodes patchy meningitis and I have to get blood patches done. You should check with your doctor first about flying.

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gilby53 | @gilby53 | Mar 2 11:11pm

Hello. Glad to find this group. I am 71 & was diagnosed with idiopathic pachymeningitis a year ago. I began to lose the hearing in my left ear. ENT sent me for a MRI. Then sent to a neurologist. Confirmed pachymeningitis. Multiple MRIs. Lumbar puncture showed high protein level in spinal fluid. Sent to infectious disease specialist who ran all sorts of bloodwork. No obvious cause. Have developed vertigo, balance issues & some issues with my gait. My neurologist just retired. A frightening, rare, lonely disease. Not knowing what to expect.

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bikeforfun01 | @bikeforfun01 | Apr 20 8:33pm
In reply to @jrt26 "Hi @tracyb and @megmor and cc to @cgrammie2. I was diagnosed November 2016 after a mini..." + (show)
@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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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

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bikeforfun01 | @bikeforfun01 | Apr 20 8:50pm
In reply to @lcb "Hey! I had a grand mal seizure 2 years ago and spent 4 weeks in hospital...." + (show)
@lcb

Hey! I had a grand mal seizure 2 years ago and spent 4 weeks in hospital. I lost the sight in my right eye from swelling in my optic nerve. A suspected anca vasculitis had inflamed behind my eye and the dura of my brain. A brain biopsy revealed hypertrophic pachymenigitis and I was started on large doses of prednisone. Swelling went down in my eye and sight returned but had terrible double vision for about 4 months. This diminished and normal now. They initially wanted to have me do Rituximab but my insurance wouldn’t cover(BCBS) so they kept me extended on Prednisone for about 6 months , tapering down and now I am on 1000mg of Mycophenolate daily for a little over a year. Vision pretty good now though Prednisone did a number on my body cataracts, torn rotator cuff. No more seizure and gaining back some of the 40 lbs I had lost. I deal with crushing fatigue that has no rhyme or reason on how it comes on me. I also have some balance issues that come with fatigue. I am a personal trainer and it has been difficult to try and work my way back. Hoping at first of year to be able to cut back on the mycophenolate.

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Hi @lcb Hoping we are able to connect. A family member has been diagnosed with pachymeningitis and is experiencing complete vision loss in one eye and nearly the second. Been on the journey with steroids and currently rituximab. It is hard to find people with vision loss and this disease at it doesn't hit every body the same. Would love to hear about your journey and gain some insight -- please reach out. Thank you!

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