Surgery 16 update, ER trip, seizures & such

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.

"Weird-Ass Diseases" and Mike Rowe

I had my appointment with my pain man today. He is wonderful, very compassionate and honest. First and foremost he wanted to know what happened with my trip to the neurosurgeons in New York. I told him he was right about the EMG test the local hospital did being completely wrong; I said NY redid it, and strongly suspected Thoracic Outlet. He immediately went, "Oh, no no no, you don't have Thoracic Outlet. There are two kinds of it. There's functional, and true. Functional, it's fine and people don't have to do anything. With true, it's really rare and there's a problem with the artery and diminished pulse in the arm."

I looked at him and pointed and went, "THAT'S the one!"

His jaw hit the floor. He said I HAD to be kidding. I told him about last week's appointment with the cardiothoracic surgeon and not being diminished in the arm but have complete and total loss of pulse, Doppler confirmed, the vascular doc and chest CT.

True to his nature--honest, blunt, but always willing to stick with his patients--he just shook his head and said he was just shocked I had this, that "lightning struck" me or something, that he wanted to check his books because although Chiari is fairly common, a "TRUE" (arterial) TO is very rare and he's sure there is no documentation of a patient having both combined.

My favorite quote of today though is when he said this was going down in the "Weird-Ass Diseases" collection.

Sigh. I was given a stack of prescriptions, some pain, some anti-seizure; an order to check my liver function because of all the stuff I have been taking for so long. I'll do the liver panel tomorrow. He's adding (the painkiller) Dilaudid a few times a day to take at the same time as the Zanaflex, a titration schedule to get off Topamax after the last couple years, a titration schedule to add in (anti-seizure med) Depakote. The Topamax will take a couple of months as I'm on such a high dose and I have insurance issues, and the Depakote will take 3 weeks. I plugged in the titration schedules on my PDA because one look at all the varying info, changing every few days, and my brain about had a spasm. I'm just glad at least my other meds stayed the same. I really needed that painkiller change though. Fingers crossed for pain improvement.

Tonight my show is on, Dirty Jobs. I pretty much spend my days baby-sitting my recliner. I read a lot, and help newly diagnosed patients who are sent my way online, but as for the quiet time, the only thing on tv I watch is Dirty Jobs. It's the first show I have watched since Quantum Leap went off the air--ha! Ok, I watched an episode of FutureWeapons this year but all of my friends know it's because my dear brother was on it! You can't beat that! Dirty Jobs though, Mike Rowe just gets me in stitches, laughing until I can't laugh any more and my cheeks hurt all night. In a life where laughs can be few and far between, I take great joy in Mike's sense of humor and new shows on Tuesday night on Discovery Channel (and of course I can't miss daily reruns, no matter how often I've seen them).