I made it through my 16th surgery about 6 weeks ago. I had a post-op check today; it was originally 2 weeks ago but they said I hadn't made enough progress and made me come again this time. Thankfully two weeks made the difference though! My incision is behaving well, contrary to what Ehlers-Danlos would like for it to do.
My seizures over the last year have done nothing but worsen despite getting up to 600mg on Topamax. After things seemed to even out with the surgery, I had Keppra added on to my medication routine a couple weeks ago. I quickly noticed my headaches were increasing, and badly. I developed a low-grade fever and had bruises all over, more than normal anyway.
They hit a peak earlier this week on Monday morning. When I woke up, I immediately noticed the noise in my ears was bad enough I couldn't really understand what my husband and children were saying. I couldn't eat, was dragging, and in tears all day. My husband that night tried to get me to go to the ER and I would have agreed but for the 7:30 a.m. dental appointment both of our children had the next morning; we are losing our insurance this month and this appointment was to lead to dental work, so it couldn't be delayed. He knew though when I didn't fight going in after they were done, it must be bad. I usually save hospitals for surgeries and cut arteries. Our plan was for me to accompany them to the dentist, find somewhere to take the kids right afterward, and take me in.
By morning, the vomiting hit. There was no way I could go along. My friend came over and took me to the hospital while my husband and children were still gone, and stayed at the hospital with me the entire time. I didn't even have to sit down in the lobby, when I told the girl through the window that I'd had multiple brain surgeries and it felt like my ICP (intracranial pressure) was up, that I'd had 24 hours of hearing loss and vomiting, they instantly brought me in to triage where it showed my heart rate was wonky, then straight to the windowed room in front of the nurse's station.
I got the usual lines for fluid, pain control, and nausea control. I went for a CT, had the usual blood and urine tests. In a nutshell, I don't agree with the Keppra and stopped taking it. I also have a urinary tract infection, which of course didn't cause this whole thing, but they said it's severe enough that they wouldn't be surprised if it was adding to the pain. So I'm on 1500mg of Keflex for the UTI as well.
As for the seizures, the thought has always been that they are due to the fact the right half of my brain is tangled up in scar tissue from my 9 month bout of meningitis from the fiasco of a brain surgery at THAT place in Phoenix.
Now though, after a year of not only no response to anti-seizure medications, but continuous worsening of the seizures has my neuros now believing they are originating not from my tangled up right half of a brain, but instead from my equally scarred up brain stem. It does make sense, but it is not really news we want to hear.
That's pretty much all I wanted to update on today. It's been a long week and I'm tired, still dragging from the events of two days ago (my children actually ended up having three teeth extracted between the two of them at that appointment when I was at the hospital, it was bad enough the dentist wanted to deal with it right then and there) so I'm going to sign off for now. There is a whole lot more going on than this, boy is that the understatement of the year, but I'll leave it at that for now. Prayers or thoughts would be tremendously appreciated for our household.