25. December 2, 2008

we went back to Mayo Clinic in Jacksonville, Florida yesterday. 11 hours in the car is more than anyone should ever drive in one day....but we listened to LOTS and LOTS of Christmas music!! :)

Basically the doctors at Mayo agree that we should "continue doing what we're doing" regarding the pseudo tumor cerebri. Continue on the meds and see my neuro-opthamologist at Emory every 3 to 4 months. He really gave us great comfort by telling us that Emory has one of (if not THE) best neuro-opthamology departments in the country and that they are the ones that specialize in my illness. They did mention that there are surgeries available to help better control the pressure and fluid to my brain...it may be something worth looking into in the future, but for right now the medicine I take is keeping it under control (even though it has really bad side effects) so we'll stay the course and keep pressing on. As far as dealing with the pain (specifically the severe headaches) there really isn't much they can do other than put me on prescription pain meds......and I've chosen not to do that.

The good news is that all of my lab work came back with good reports. They felt comfortable finally ruling out neuro-sarcoidosis....PRAISE THE LORD!!! That is no longer a concern.

My echocardiogram of my heart (ordered after they heard a heart murmur) was "basically normal"...not sure exactly what that means....doc says they will send me a full report in a couple of weeks. I may need to follow up with a cardiologist here in town.

As far as the problem with my jugular vein going through my right, middle ear and the anuerysm on my jugular vein, they are recommending we simply leave it alone. It has caused some hearing loss (and I may finally be able to get a mini-hearing aid in January because of a new insurnace policy Philip and I will be on) but hopefully will not continue to cause any more loss. The docs feel it would be much greater risk to do surgery than to just leave it alone.

They did not have any of the reports back from radiology (readings on my MRI's or CT scans of my brain and neck) so they are supposed to call me as soon as those come in.

All in all, Philip and I both feel like this was a successful endeavor. Just finding out that I do NOT have neurosarcoidosis and being reassured that we're on the right track in how we're dealing with the pseudo tumor cerebri made it well worth the trips to Jacksonville. We are still dealing with the issues with my hands which we thought were possibly related to the neurological problems but the doctor didn't seem to think it was, so now we're not sure what is causing it. It may be coming from the fact that I have two bulging discs in my neck (which I've had for several years)...but we're not sure.

I'll keep you posted on any further developments! :) Thank you, thank you, thank you for your faithful prayers and for your sweet words of encouragement!!

Love and blessings to you all!
Michelle