I just realized that I've not posted an update in quite a while.
Where am I now on this long journey?
Fall is here and Winter is around the corner. As the temperatures dropped, my ICP (the pressure of fluid in my brain) climbed up. I became more sick, experienced increased symptoms. The vertigo became worse, the headaches are constant, the nausea is nearly constant, my memory is like swiss cheese, full of holes, and my vision is blurry and often doubled. So, I started taking Diamox again. It is a mild diuretic that is used to pull fluid from the body and it helps a bit with the symptoms. However, it only helps a bit, not quite enough. So, whenever I get around to calling my doctor's nurse, they are doubling my dose. Yay for yucky side effects.
I've been trying to find a neurosurgeon that is at least within my home state who is not afraid of me and willing to take over my care. Traveling has become too much. I've not had much luck so far. I found one who will care for me in a "shunt emergency" but that's it. Its an uphill battle to get my primary physician to make referrals so that I can check out other doctors. I'm not sure why. It doesn't cost them anything. And, when they finally give in, I have to wait months for that appointment. My physician refuses to help me schedule appointments with more than one NS at a time. They insist that I have to see one before they will help me schedule with the next. Between the wait time for them to make the referral and the wait time to get in and see the surgeon, I may manage to see three in a year. I'm only interviewing them, not asking for surgery! Its ridiculous.
In the meantime, I do have a follow up appointment with my doctor in Maryland in February. I'm not sure how I'll manage it, yet. I've drained all of our resources this year with my surgeries, trips, emergencies, medicines, etc. I no longer have backup plans. I'll save what I can but it will pretty much take a miracle to fund another trip.
At this point, I don't really have new symptoms, just an increase in some of the old ones. Of course, some problems were resolved with surgeries. I'm guessing, based on my symptoms and limited knowledge, that I still need a little repair work. We'll cross that bridge as we come to it.
For now, that's where I am. There is nothing more exciting to report.
