Thursday, September 13, 2007

Change of plans

I did the chest CT with the iodine and had to the hold the arms-over-the-head position afterward until Dr S came out to talk to me. I quickly had no feeling in them so was relieved when he came in and gave me permission to move. He's the vascular interventional radiologist that the cardiothoracic surgeon from Monday wanted involved. Dr S was not comfortable continuing on with the next component, the angiogram. He had been watching the CT and said there was definitely arterial compression but wasn't sure yet there wasn't something else going on. He asked me what the cardio doc did on Monday and I showed him, also mentioning briefly about the CM/EDS/etc so he tried the test himself and when my pulse disappeared he agreed the angiogram does for sure need done. However he hadn't been aware of the Ehlers-Danlos Syndrome so he still wasn't comfortable continuing with the angio right then, not until he had a talk with the cardiothoracic surgeon about what was going on and getting my full history so it can be done safely. He also wants to talk to him about the possibility of a venogram.

So, for now, the vascular doc and the cardio surgeon need to have a chat and they'll call me and schedule the angio and possibly a venogram.

I came home yesterday and my ICP started feeling messed from up the length of time on the table. With the second decompression the craniectomy was expanded to a pretty hefty size and every since then, anything touching it at all bugs the heck out of my ICP--laying on a pillow, table, comb, whatever. They took quite a few series of scans with my arms in different positions, each time the IV auto-injector releasing more iodine (love the "Did I just pee my pants?" feeling, ugh, but I understand gadolinium just doesn't cut it in imaging like this). I slept a bit and felt worse when I got up, was out of sorts the rest of the night. Feel a touch better today, intracranial-pressure wise. Good thing. I have a committee meeting via phone in about 40 meeting for a CM/SM group.

We have parent conferences for both kids this afternoon. Yesterday before going to the hospital, we had DD's meeting with the teacher, behavioral specialist, and principal to work on her 504 accommodation plan. Hopefully this will help her be more successful in school. Fingers crossed.

I will post when I know more on the testing schedule, and if they tell me any more on yesterday.


  1. Well, I'm glad you're not alergic to iodine. I have to take megadoses before a ct. I hope they do all this stuff they have to do safely, and I'm sure you hope that too.

  2. Yikes! That stinks about the prednisone--I hate that stuff! No problems with iodine here. Usually I just get gadolinium. I did get iodine when my appendix ruptured the 4th of July though.