I went to Salt Lake City last week to see the surgeon and have another angiogram. It was good news, all the way around. He determined the tremors I've had are not seizures. The shaking, the stumbling, loss of memory, and all the other things are just normal after a major brain surgery. The only thing he had no answer for was the loss of appetite. But the explanation for that showed up the next day.
The morning after seeing the surgeon, I had another cerebral angiogram. I was quite willing to have the doctor crack my skull open and go exploring, rather than have an angiogram. I kept letting everyone know that. It paid off. The "Professor and Executive Vice Chairman Neuroradiology" did the procedure himself. He made sure I knew the whole crew by first name. The anethesiologist assured me that he knew how to hit and stay on that line between having people unconcious, and awake enough to tell him if they have a stroke (?!). He was so good, I didn't even feel the IV needle. Toward the end, when they were closing the artery, I groaned once, and almost immediately felt better. It was a great team, and not an unpleasant experience. Totally unlike the first angiogram.
Two hours later, after a nap in the short stay unit, I became a starving beast. They kept tossing food and drinks into my room. I snarfed down everything. So much for the 10 pounds I had lost. The loss of appetite had an explanation. I had been dreading the angiogram that bad. Today, I wouldn't be bothered at all if Dr. MacDonald wanted another one. As long as I could have Dr. Stevens, John, Mad Max, and Doreen doing the job.
They even sent me home with a copy of the angiogram, so I could post it on this site. Give me a week or two to work on that.
The flight to SLC and back was, well, not memorable. My brain hit overload as soon as I walked into the airport. Too much new stuff to see, too much motion, too much sound. I'm not up to full processing speed yet, so just got bits and pieces through all the jumble. I know they put me in a wheel chair. And I know I had my bag in my lap, and just kept holding my ticket out in front of me, hoping someone would take care of me. Delta did a great job, because I got there and back, without loosing anything but myself. They kept track of me for me. I'm used to cabs now, so was able to start getting caught up once someone put me in a cab. And the University of Utah Hospital is just about like home, so I was able to find my way around. I even found my way from short stay, to billing, to the lobby and called a cab. Don't know how I got released without being rolled out in a wheel chair. Maybe all the staff was afraid to come near me, since I was eating everything I could get my hands on. :-)
I had an eeg today, the first since the surgery 3.5 months ago. I've got a copy, but am no expert at reading it. The expert reading will come in a few days. It looks a little rough to me, but better than I expected. Brains take a long to time recover from being disturbed. Guess I'll be staying on the anti-seizure medication for a while yet, just in case. I'm beginning to hope that I might be able to drive again within about 6 weeks. Short daylight trips only.
The doctor gave a me tentative recovery time frame for the first time -- one year. That's a lot better than the two years I'd been hearing about. Guess it will be time soon to start thinking about where I want to go with my life. I can't tell you how great it is to have a future to think about. I plan to make good use of it.
This site has started taking quite a few hits since my narrative was posted on the AVM support site. (Link coming soon). If you are a new visitor, welcome. You won't find a lot of technical info here. This site is meant to record the subjective experience of going through major brain AVM surgery. Believe me, it's quite an experience! :-)
You may have noticed that I tend to be a prolific writer. We're working on the condensed version. It will be posted when I can quit accidently erasing all the files.
Thanks for visiting, and feel free to write.
Well, it looks like those "coordinated shivering" episods I've had were actually seizures. I just wrote them off as a reaction to some medication, or something. They weren't life-shattering, and didn't last long. I just thought they were kind of weird, and forgot about them. But one woke me up the other night, and I mentioned it to my home nurse. Now I'm under orders to call 911 if it ever happens again.
I'm also going to have to have more blood tests and some upward adjustments my medication. That's a bit dissapointing. I finally read the side affects of Dilantin the other day. One of the first on the list was blurred vision. The whole list read like an accurate description of my current condition. I was wondering if I needed to get off the medication for a while to see if everything was caused by the medication or the surgery. It sounds like getting off the medication is out of the question for the next 3 months.
I'm having headaches again, most of the day. They are in the same place, and of the same quality, as the headaches I had before the surgery. They are not bad, though. Just a little annoying at times. I understand that many people continue to have headaches after surgery. I can live with these.
Other than that, things are going well. I read my nurse a paragraph from the newspaper today. I can read it now, between the blind and blurry spots. But it isn't easy, and is very tiring. But big improvement. It wasn't too long ago that I was having trouble seeing the newspaper at all.
It looks like September is off to a good start. My sense of self seems to be integrated with my body now. I can look in the mirror and say, "Hey, that's me!" I had no idea that "I" had been absent all this time. Anytime I looked in the mirror before, I just saw this body that didn't feel like it was a part of "me".
Vision seems to be improving. My mind is clearer and sharper, and responses are faster. I still have a long ways to go, but seem to be coming off the plateau, and am seeing more substantial progress. My vision is more acute, but it is still hard to read and see around all the blind spots. Also, my brain still has trouble processing rich or moving visual fields.
I still catch every little bug that comes along. So the immune system is still a little challenged. I'm still very pale, and don't seem to be able to darken any out in the sun. I'm up to walking about 2 miles twice a week, if I can rest for half an hour at about the mid point.
I plan to start working on this web site this month in earnest. I have to fly to Salt Lake City for another angiogram the middle of the month, and that may slow me down some. Keep checking.
We should know by the end of the month if I have to have any radiation treatment to get out the last of the swollen vein. It's deep in my brain, but should be small enough to be zapped out of existence. No more knives.
Thanks for your interest. Please write.