Moyamoya, Angiogram Edition

You know what’s lots of fun? Having an attending physician mistakenly tell you, “If we think we can get it, we will.” Okay, it’s not fun, and when I asked him to clarify, he mentioned an aneurysm. Seems like they got the stuff mixed up on the board in the back where they let the doctors know which procedures are going to be done.

Maybe I should start at the beginning?

As I mentioned here, I’d previously given 11 vials of blood for the sake of figuring out what caused my Moyamoya. Apparently, that wasn’t enough. Dr. Messé’s secretary was very apologetic when she called me last Monday and told me he’d forgotten to order a complete blood count. Luckily, I was able to do the test locally. It was done by Tuesday afternoon, and just in case, I called her on Wednesday to let her know it’d been done. Thursday morning, she called and told me she still hadn’t gotten the results, so I gave her the lab’s number and she took care of it.

Just before 3:30 p.m. on Thursday, I got a call that my test had been bumped to 6:30 a.m. on Friday. No big deal, just less sleep for M and me. I went to bed around 10 p.m. on Thursday and woke up bright and early at 2 a.m. I was not amused.

We were on the road by 5:30 a.m. We were sidetracked by an accident that closed a major highway on the way to Philadelphia and needing to go a back way because M missed a split on 95 North. No big deal. I got to admissions and checked in by 6:30 a.m. I got a pager thing – like “Your table is ready” – to let me know when they were ready to process my paperwork. The thing buzzed, I answered a bunch of questions, blah, blah, blah. We were sent to Radiology and waited for someone to come get us.

The first doctor we talked to explained that I was probably going to have to lay flat for six hours before they’d even let me sit up. Then, and only then, would we be able to talk about when I’d get to go home. That was news to us, so once I got back into the room, M called to make arrangements for someone to come pick me up, because he had to work that night.

We talked to a total of three doctors before the test began at roughly 8 something, including said attending who scared me because he thought I had an aneurysm. I was okay going into the test. I really was. They ran around like chickens with their heads cut off trying to find some tape that wouldn’t cause me to break out [while it wasn’t so bad, I did break out]. There were at least seven people in the room, so good thing childbirth took most of my modesty away, right? Someone made a comment about an ultrasound probe and I joked I wasn’t aware I’d been abducted by aliens. I mean, bright lights above my head, probes . . . come on, you’d have thought the same thing. No? Just me? Okay, I really needed the humor that day.

Once we got all set up, the test took roughly an hour and a half. Lots of “hold your breath” and “don’t move,” so the contrast could get to where it needed to be. They managed to put some kind of cap on the wound instead of pressure, which took my flat on my back time from six hours to two hours, followed by two hours of sitting up before I could leave. Despite my insistence to the contrary, I was exhausted. I rested [I didn’t sleep, because there were far too many people talking VERY LOUDLY around me] for a bit, then M came back to tell me he’d made arrangements to get me picked up.

He left shortly after I was allowed to sit up and to finally eat something, and I finally dozed off. The nurse woke me up, and then Dr. Messé came in and told me the angiogram had basically just solidified what they already knew. The only real new information he gave me was that they’re going to do the surgery on both sides of my head. I kind of expected it, but I wasn’t really ready to hear that. I know the left side will be done first; that’s the side I had the stroke on.

The only question is when this will all happen. Dr. Zager is the surgeon, and his office was closed on Monday. As soon as I know, you’ll know. Thank you for the good thoughts!

Comments

  1. Kathy says:

    Thanks for the update. I’m eager to find out when surgery is. Maybe I missed it, or maybe I’m being obtuse and you said it a million times — is surgery supposed to fix all of the issues you’re having? I hope they can get you in ASAP. I’ve been sending up as many good thoughts as I can. I cannot imagine going through something like this. You always have such a brave face on. You’re amazing. <3

    • noisewith says:

      You’re not obtuse and I haven’t said it, really. It will fix the issues, for now. Because this disease is progressive, I will forever have a team of neurologists/neurosurgeons keeping an eye on me. I imagine there will be at least yearly check ups, and probably yearly MRIs and MRAs. I hope I never have to do the angiogram again [because it was uncomfortable and irritating], but if I do, I do.

      I’ll shoot you an e-mail in a bit. I did talk to my neurosurgeon’s office yesterday, but nothing is scheduled. I’ll explain further. ;)

  2. You are way too young to be having all these issues! I’m so sorry. I know it’s probably not much comfort but I will keep you in my prayers and thoughts. If you ever need to vent, cry, what not, don’t hesitate. Hang tough girlie! ~hugs~

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