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← Return to Pachymeningitis: Anyone else?
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@wendyaustralia
@77smith77
Thank you for your responses. I was beginning to think I was the only one out here with a current Pachymeningitis diagnosis. As I said, the cause of mine has not been determined, so they are going with idiopathic. My most recent prior MRI was in 2018 and showed nothing. They tried to do another MRI in February, but I am unable to lie flat due to vertigo. My neurologist told me there was really nothing that could be done. He said steroids haven't proven effective and drilling into my brain would involve too much risk. So after he retired, I pretty much gave up. My hearing loss in my left ear is worsening, as is the eyesight in my left eye. I have audiology and ophthalmology appointments in November. I see a physical therapist once a week for balance therapy. Otherwise, I just deal with the symptoms as best I can.
Replies to "@wendyaustralia @77smith77 Thank you for your responses. I was beginning to think I was the only..."
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The drilling in the brain can be a problem. The open biopsy involved removing a stamp sized piece of my skull just forward and above the L ear. No shaving of hair. I have a titanium plate below the skin now. You can still have MRI as titanium is not magnetic. I worked with a vestibular therapist on balance. A specialized Physical Therapist with a special room where the floors and walls actually move to test balance. You have a harness so you can't fall. She developed a special Epley maneuver for me. They do have upright MRI units for those who need them. I used a company called 2nd MD for a second opinion. They are online and review all your records. Very expensive. Also your available records might not be adequate. I now have 2 other neurologic problems Myasthenia Gravis and Churg Strauss Syndrome. Managing. Still have a pretty good life. No cause is known for the Pachymeningitis. There are several thousands of known cases. An Elephant is a Pachyderm meaning thick skin, Pachymeningitis means thick meninges. As a 100% service-disabled Viet Nam Veteran all my medical care is free. Fought with some great Aussie's in the Il Drang Valley. Never surrender.