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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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Wendy | @wendyaustralia | Nov 8 7:27pm
In reply to @77smith77 "The drilling in the brain can be a problem. The open biopsy involved removing a stamp..." + (show)
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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.

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@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

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gilby53 | @gilby53 | Nov 9 9:58am
In reply to @wendyaustralia "@77smith77 @gilby53 Dear @77smith77 and @gilby53 Thank you both for sharing more of your personal stories..." + (show)
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@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

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@wendyaustralia Thanks so much for your response, Wendy. Just knowing that you and @77smith77 are out there--that there are others with pachymeningitis--brings me comfort. Thank you both for sharing your stories. I wish you both the best. I just celebrated my 72nd birthday on the 4th and am so very grateful that I remain as healthy as I do. God bless.

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