9. Friday, August 15, 2008

"new post...latest health update..."

ok....try to follow me...i'm going to give a "full run down" of where we stand and what we know so far....

- pseudo tumor cerebri...my spinal fluid leaks and causes increased pressure in my brain (this is also what caused my vision loss in 2003). Right now we're managing it with strong medication (with very painful side effects). I'm going back to emory on September 4th to see my neurologist for a check-up and I will also see my neuro-opthamologist that same day to make sure there haven't been any changes with my eyes.

- blood clots...my last blog mentioned concern about possible blood clots in my brain. PRAISE THE LORD the CT scan of my brain revealed i do NOT have any blood clots in my brain!! my neurologist said that i have very small veins in my brain which can slow blood flow (and may even be the cause of my pseudo tumor cerebri), but NO BLOOD CLOTS!!! HALLELUJAH!

- neurosarcoidosis...it is a form of lupus and apparently is very serious. i need several very expensive tests to diagnose this disease, but we are waiting on my insurance company to approve them before we proceed. soooo....we still don't know much here....

- my ear...many of you have heard me complain about my right ear for the past several years. i have a "whooshing" noise that is almost constant. it drives me insane. my doctors have gone back and forth as to whether or not they thought it was related to the pseudo tumor cerebri. Then just recently, I've had some hearing loss in my right ear. well...my neurologist from emory called and said he spoted something unusual on my ct scan of my brain related to my EAR! Long story short - he says my right jugular vein is "riding high and wearing down on the bone" and is running THROUGH my middle ear!! he says it looks very painful!!! (IT IS!!!) he is referring me to the chairman of the ENT department of Emory to see what can be done. crazy!!!

these are the only updates we have right now.

as far as how i'm feeling...most of the time...pretty rotten. some days are better than others....some times are better than others. mornings and late in the day are hardest for me.

i spoke with my neurologist yesterday and he is changing my medicine (taking me off the topamax and putting me back on diamoxx). probably won't affect how i feel too much...the side effects are very similar for both of the medicines....but hopefully it will help my headaches by relieving the pressure from the spinal fluid.

i will continue to keep you all posted. thank you so much for your faithful prayers! they mean so much to me! god bless!