Sunday, January 18, 2009
Cleveland Clinic?? Perhaps...
Finding an occipital stimulator surgeon is hard work!
Now if my insurance will pay for it. My nurse case manager told me if the device is FDA approved (which it is - they are testing newer ones) that insurance should pay for it. I have chased leads found through PubMed - shamelessly sending emails to people I don't know and have found some hope.
Cleveland Clinic (in Cleveland Ohio) is the only In-Network provider I have found that does these, but they DO do them. Yeah!! There is a Dr. in Michigan, a Dr. in San Franscisco, a Dr. in Scottsdale, and MAYBE a Dr. in St. Louis who perform these, but they are out of network. A very nice doctor Napoor from India gave me three more names. Of course the Insurance Company is hoping I get into a study so it all would be FREE but the chances of that are preeeeeetty tiny. All the studies are about migraine or cluster headache (which really is about 99% of bad headaches - I had migraines for years) and only a handful of people with my type of headache have had this surgery, probably because Their Bellies didn't betray them like mine.
This is the only ray of hope I have had in over a year that the pain may stop someday, or just be a little bit better rather than a lifetime of BAD. I am prepared to have my hopes dashed on the same basis that all other temporary improvements have been for naught.
Worked on my sister's PC. We have all been blaming Hewlit Packard because we thought her install disks were bad. I finally figured out in the wee hours of the morning that her mother board was flaky - the longer I ran it (I almost had it faked out to reinstall correctly last night at about 11:00) the worse it got - until it started looking for drives that weren't even there - the X Drive of all things (Is that where the X Files are stored??) and then randomly asking for another letter of the alphabet....The only drives were her C and D drives - I had disconnected every thing else HOURS ago... I found a diagnostic that ran on her mother board for 3 hours and it came up with like 6,000 errors. Yikes!!! I think my response after all those hours we all have spent working on this lovely piece of equipment should have been saved on an X Drive.....
Friday and Saturday - pretty good days for me - Sunday not so bad....Monday or Tuesday The Headache is sure to rev up its RPMS - it's idling at about a 4 for me this weekend so far!