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cgrammie2 (@cgrammie2)

pachymeningitis

Brain & Nervous System | Last Active: Jun 20 12:01pm | Replies (85)

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@helena49

Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake Forest. Treatment with steroids almost killed me. The only symptoms I had was loss of hearing. It was so drastic an MRI was ordered for my brain. Thus the Pachy diagnosis….fast forward to 2020 I got a second opinion at Duke and was told it was not Pachy, but a brain infection. It went away and has now returned. Still, I have never had headaches, very little vision loss and I'm thinking maybe 3rd x the charm..and asking for another opinion at Mayo..Currently, I am on no medication and will refuse steroids. Any thoughts out there??

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Replies to "Hi..I'm 71, I live in VA and was diagnosed with Pachymeningitis in August 2018, at Wake..."

Pachymeningitis is rare.
You are going to a good place (Mayo) where you might have a thorough lab evaluation,(repeat MRI?)and a diagnosis.
Let us know.

Hi @helena49
I live in San Francisco Bay Area and was also diagnosed with ideopathic Pachymeningitis In 2016. They first thought it was meningioma in the cavernous sinus area affecting the TN and a few other cranial nerves. Treated twice with gamma knife, however, after the second gamma knife in 2014 I did not feel well for over two years. Dizziness, shooting pains, headaches, blurry vision, hearing loss and facial numbness. The inflammation spread throughout my dura(right and left side) and a craniotomy was performed for a biopsy. Treated with steriods for 6 weeks and felt a little better but came right back plus i have type 2
Diabetes. Then treated with rituximab infusions x3 and so far that works but I need treatment every 12-18 months. Let me know if you have any questions.
Thanks,
Joyce

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