After many months of pain, suffering, and med changes with little or no success, and often negative results the neurologist I was so thrilled to find almost 2 years ago gave up on me and referred me to Michigan Head and Neck Institute, I looked at this as a mixed blessing til Tuesday and Wednesday of this week, you see, MHNI is supposedly one of the top headache places in the Nation, however they use a lot of coping techniques, and protocol meds that I am already on, so we were not 100% confident in their ability to help when we were being sent (after all 21 years of a headache, I think I do a pretty good job of coping MOST of the time, until lately I did normal tasks, since February it's just been kicking my butt way more than I like, hopefully the new meds the new docs are trying will help (I am getting there)
Last Tuesday (August 10, 2010) I finally had enough, I had emailed my neuro and left messages because MHNI was not going to be getting me in til November 8,2010 and I was going to run out of meds if he didn't refill or see me again (he had been seeing every 2 months) and he stopped returning calls, but the last straw was when I got stuck in the bathtub, neither leg would lift me out and Chris had to help me out, walk me with my cane out to the living room and help me cool down. The shower didn't help the pain and I was feeling worse than before. We called family to watch Lauren, and decided to head to the ER. Once there (we decided on a different hospital than usual because after praying we decided we didn't want to be sent back to the same docs who were doing NOTHING for me) God REALLY used this decision in an AMAZING way.
Within less than 30 minutes of arriving in the ER I had an IV in and pain meds going, even after the two tries to get the line started. The ER doc had decided before giving me pain meds she was admitting for a minimum of Observation overnight, to be seen by THEIR neurologists, What a blessing that turned out to be…
In the hospital I got pain meds around the clock that did almost nothing for the first 24 hours, then I got a WONDERFUL spinal tap, We don't know how high my pressure was, but the radiologist said I would have broken the manometer so I trust it was WAY too high, a dear dear friend had been scolding me for putting it off for MONTHS, she was so right…sorry Brooke.
Anyhow, after my tap, I did not get immediate relief (and after my last tap they didn't drain me far enough so I got NO relief, this time he drained A LOT of fluid) so while it took about an hour to kick in, I got my pain down to a 6 (it had been literally about a 30+ so a 6 felt like heaven, I had not felt a 6 in years, probably before Lauren was born.
At my last appointment with Dr. Turner he had asked if I thought I could have Fibromyalgia (he had a medical student or resident who did a FULL neuro exam) and I didn't know (not my job to research, even though I know the symptoms coincide with Chiari A LOT), when I was in the hospital the hospitalist and ER doc asked the same question, I actually told the Hospitalist that I didn't go to medical school to self diagnose myself, I was in a crabby mood when she asked, Pain meds weren't cutting it and she had just poked me all over…I don't like docs poking me especially when it HURTS. But hey she was doing her job and that's where the changes come in.
Dr. Rossi, the new neuro met with me, she thinks there may be something with my neck, if it's my Chiari, she will know, we have decided to manage it medically for now and possibly see if physical therapy will help as well. I saw her in the hospital, they wanted me to follow up with my primary doc, but he always said "its not my job" and reminded me of the story "Everybody said that Anybody could do all the good things that NOBODY did" because My 3 main docs were named EVERYBODY, ANYBODY, and NOBODY. I switched PCPs, Dr. Dobrin I met today, and is the Furthest from Dr. Butlers it's not my job. We went over my history, and what I considered Heartburn she considered chest pain and ordered an EKG and Chest X-ray, she ordered a ton of Blood Work and a Urinalysis. Uhm, overall I was there 3 hours…she checked me HEAD to toe, Literally, and because of my pain at ALL trigger points, said fibro isn't a question, it is definite. Then she went on to CHEW ME OUT, lol for not seeing an Eye doctor (which was well deserved with IH I am supposed to see them annually or more often, and I am OH 10 months overdue) she gave me a referral, and it was so funny, I was checking is ratings on Vitals.com and a friend rated him. Then she gave me a referral to the Ob/Gyn in her office L because she is concerned my VERY Heavy Periods could be caused from fibroids or something else. Either way, she doesn't want me risking getting pregnant, so that's another doc to see. So while I got a New Endo because of my blood sugars not being controlled while in the hospital, a New Neuro because mine basically quit on me (and MHNI quit before they started, they called and told me I was too complicated for them) a new PCP, a New Ob/Gyn, a new Ophthalmologist…ahh sigh, I have lots going on, and she didn't look defeated or even scared off, just prepared for a challenge and glad that Dr. Rossi would be handing MOST of my medical care, lol, after all 90% of my medical is Neuro anyhow, but they are all in the same office with the same chart, so if I get NORMAL sick, I don't need to let someone else know about it.