Update November 21, 2000, at 11:00 PM.

Wish I could say the news was great. It's not bad, but not thrilling, either.

My vision was worse when I woke up Friday morning. It has improved only a little. I've also been really tired and have a headache. I had an appointment today with the new neurologist, but was told I was an hour late when I got there. It took weeks to get that appointment, and I had taken great care to make sure it was on my calendars, and that I had transortation lined up for the right times. She didn't have an opening again until later in January. So it will be a while before I can find out what's going on.

I also got set up for a heart monitor today, which I will be wearing for the next month. Then I was told that I have a sliding hiatal hernia with moderate esophageal reflux. Looks like I'm going to spend my recovery time going through at least one more surgery. The stomach thing may be putting pressure on my heart and causing odd heart beats. Or it may be something else. Time will tell.

Meanwhile, no change in routine. Except I will probably not stuff myself too much on Thanksgiving Day. And will keep a bottle of Maalox close.

I'm home alone for an extended period for the first time since the surgery. It's a little disconcerting. In another couple of weeks, when I'm finally used to it, my duaghter will be back.

My mood has been really upbeat and good for a while. Until today. Being late for that appointment caused me to question my ability to handle any of my affairs. As I said earlier, I had taken great care to prepare for that appointment, and make sure I had the right time. What do you do when you can't count on yourself to take care of business properly? It grates to admit that I still need some taking care of. Especially when there is no way to get that care. I can't afford a personal caretaker/secretary.

The news about the upper GI and heart problems didn't cheer me up much, either. I will be OK, and the timing couldn't be better. But I am so tired of pain, hospitals, and things like that. I just hope the next 6 months go by as fast as the last 6 did.

Cheer up messages are always welcome.

Update November 13, 2000, at 1:00 AM.

Here we go again. Somehow I managed to erase the files I was transfering. The November update got to the web site empty, and is no longer any where on my computer. One of these days I will figure out how I do that.

A lot has happened in the last few weeks. I got a copy of the surgeon's report. It contained a few surprises.

• All the major arteries into my brain were connected, or fed to, a central varix or fistula, (a short "pipe",) which branched off to some of the veins. Imagine the hot and cold water pipes in your house connected to a short pipe which opens directly into the sewere line. That was my situation all my life. How did I do so well for so long?
• The loss of hearing in my right ear may be directly related to AVM, which caused problems with my left visual field.
• The AVM shows up in previous MRI's, but was never spotted.
• I have a 25M alloy clip in my brain, not titanium.
• One blood vessel was "sacrificed".
• I sat up in a "park bench" position for the entire 11 hours of surgery. No wonder my tail bone was so sore!

The good news:

• The AVM is gone. No more surgery or radiation, and arteries and veins are healing or growing back where they should be.
• I'm driving more, but with all the restrictions.
• I feel a little more "with it" almost every day.
• I seem to be over the emotional hump.
• I'm getting more active.
• Still loosing weight very slowly.
• The $100,000.00 haircut, which never caught on, has just about disappeared.

I am amazed that I wake up every morning. Not that I'm expecting not to. It's just that being alive is such an awesome experience.

The problems:

• The more active I become, the more the mild left side coordination problems stand out.
• I'm tired all the time.
• Visually rich environments or settings with people milling around put me in sensory overload.
• I get disoriented, confused, or dazed very easily in certain situations.
• Short term memory is a little better, but more activity means there is more to forget. Net effect is lousy memory.
• I still have trouble dealing with numbers, and sometimes words.
• Low pressure systems moving through leave me with swollen temples and bad headaches.
• I'm still relearning to "see" some of the things I see.
• The apartment manager had a new dishwasher installed. It has a black front panel, black buttons, black dial, and dark blue print. I have to get down on my knees and study everything for a few minutes to find what to push and turn to wash the dishes. Memory problems keep me from memorizing button locations.
• Bookstores don't have large print editions of "Brain Surgery 101".

The clip in my brain is supposed to be MRI safe, to 1.5 Tesla, with no "significant" movement or torque. I am pursuing this to find out who's definition of "significant" is used. This is important, becuase the thought of a piece of metal swishing around in my brain is not at all appealing. Meanwhile, I have to stay away from strong magnetic fields, and wear a Medic Alert bracelette.

Future plans:

• I will be seeing a new neurologist for follow-up later this month.
• Neuropsychological evaluation will start in December, to determine the state of my brain functions.
• I have more MRI films and data to include on this site. The motivation is coming back to work on the upgrade again. That motivation wavers each time I save files, only to have them vanish into cyberspace somewhere.
• I plan to get more involved in local brain injury support groups.
• Will be doing evaluation and planning to start a local AVM support group.
• My daughter and I are working on a book outline. Anyone know an interested publisher?
• Will still work on driving skills.

I have just learned to watch the flags outside my bedroom window. When they are pointing to the northwest, I know the weather is about to change. I also know it's time to head for the medicine cabinet. Changes in barometric pressure, expecially the big, rapid ones we've had recently, cause problems with the swelling in the brain. My temples can swell noticeably. Headaches usually accompany a storm front. Perhaps I should plan on petitioning the local tv weather broadcasters to include headache forcasts!

Needs:

• Friends.
• Rides to evening meetings once or twice a month.
• An 88 key, weighted keyboard, with midi and headphone jack, for physical therapy. We hope playing a keyboard will help my left hand become more coordinated.

I will work harder at revising this site into a true AVM support site. There are new pictures, links, and information available. I will go to great lenghts to avoid vanishing files in the future.

Thanks for visiting. Come back again around Thanksgiving.