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cgrammie2 avatar

Pachymeningitis: Anyone else?

Brain & Nervous System | Last Active: Nov 9 9:58am | Replies (122)

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Profile picture for 77smith77 @77smith77

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.

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Replies to "The drilling in the brain can be a problem. The open biopsy involved removing a stamp..."

@77smith77
@gilby53

Dear @77smith77 and @gilby53
Thank you both for sharing more of your personal stories – it sounds like you have each been through such a lot in trying to find solutions.
I am currently waiting to hear from my neurologist regarding my own next steps, as the blood patch does not seem to have alleviated any of my pachymeningitis symptoms.
@gilby53 – I hope that your upcoming audiology and ophthalmology appointments give you some relief.
@77smith77 – you are right that there is a strong bond between Australians and Americans. My husband and I have been to the US multiple times, and have a number of US friends whom we hold dear.
Regards
Wendy