• Kyle had a major setback Friday and Saturday.
• He spent most of the day Saturday in the hospital.
• His vision is much worse, back to about 2 weeks ago.
• His optic nerves are swollen, and there are ruptures in the blood vessels in his eyes, and some mass effect in his brain.
• The setback is considered normal, and a CT scan showed nothing unexpected at this point after surgery.
• This is the first setback in 5 weeks, where many people have setbacks every few days.
• Recovery from all the swelling and broken blood vessels is expected to take at least 3 months, and then he should start seeing significant progress.
• He can walk now without a cane.
• Other brain functions still seem to be improving, but time sense and memory were affected by the seback. They are better today.
• He has an appiontment with the surgeon in Salt Lake City on Thursday for a routine follow-up.

Update July 14, 2000, at 9:00 pm.

Kyle here.

I got back from a trip to Salt Lake City to see the surgeon about 2 hours ago. The trip was very hard on me, but I guess you could say it was successful. I'm really tired and can't see quite as well as I could when I left yesterday.

Dr. Macdonald said he was very pleased with my progress. Exactly what my home nurse said he would say. He knew about the setback, but doesn't seem to think it's too unusual. He was concerned about something he saw on the CT scans I brought him. There is a spot that is either an empty area where the problem vein used to be, or there has been a small amount of bleeding. He didn't think it was much of a problem, but wanted another MRI done right away. So I didn't get back to my motel room until nearly 10:00 pm. It was the longest stretch without sleep that I've had since surgery.

I have to go back to see the doctor in mid September. At some point later I will have to have another angiogram. They are not certain that there is no more fresh blood flowing into the vein. If there is, it will probably be treated with radiation. The affected area would now be very small.

My vision problems are still bad, but are considered temporary. There may not be much change for the next 2 or 3 months, though, until the swelling is almost completely gone. After that, it could take a year or more for all the brain and nerve functions to fully recover.

Final note -- it has been asked how I can have so much trouble seeing and reading, and spent so much time writing these updates. It's simple. It takes much longer than you may think. The therapist says typing is good therapy for my coordination problems, so doing a lot of typing is good exercise. I type with my eyes closed, and make a lot of mistakes. After I rename files, they usually will not load, and I cannot find the misspelling myself. I use a lot of help, and run files through spelling checkers several times. After several sessions, I'll start a fresh reading, with the text set to the largest size, and with my magnifying glass, searching for spelling and grammar errors. When something is corrected, I have to switch windows, make the correction, switch to another program and save the file on the server. Very tiring. Very time consuming. Especially since I read like a first grader, 1 or 2 letters per eye fixation.

Or I just turn it over to someone else to take care of.

And that's the story behind that. As far as reading email, a lot doesn't get read at all. Most of the rest is read in parts, or I use the voice reading function or have someone else read it to me. That's much easier to do than wearing myself out trying to read a few lines.

But don't stop wrting. A couple of nice emails really help perk up my day.

I'll get some help scanning some of the hospital films and taking pictures, so we can get some pictures on line next Tuesday. Thanks for your support.