A special thank-you to everyone who has been checking the updates or writing so often. We're continually amazed at how people are hanging with us through the process. Especially after a month.
I've been in a bit of a slump for the past few days. It seems to be the after-surgery let down, which I was warned about. It hit about 2 weeks late, just about the time I learned that I should be sleeping more, doing less, and staying away from crowds.
I've decided there's nothing I can do but enjoy it. Yes, you can enjoy being down. But I have to keep watching how I respond to people. I can still choose to respond in a positive or cheerful manner. And I do, most of the time. :-)
Again, I am surprised to learn that there are people accessing this web site who are truly interested in learning how to tell if they have an AVM. I will follow up on last week's promise and give you more information on that this week.
First of all, you need to know that arteriovenous malformations are not very common, and come in several forms. There are the malformations that cause big colored blotches or spots in the skin. I understand that those are more of a cosmetic problem than any kind of health risk. I haven't done that much research about that type, so would suggest that you follow some of the links at the end of this update, or from the main page, to learn more.
There are also AVM's that form in the spinal cord and the brain. The one I had was is the brain, and is considered the most dangerous. About 25,000 people in the United States have my type, and many, if not most, will have no inkling that this killer lies in the brain, until it bleeds, causing stroke-like symptoms, or kills them. It's a congenital condition, forming in the brain before birth. It is not known yet if there is an inherited tendency, so if you have a parent who has or had an AVM, it wouldn't hurt to have it checked if you have any symptoms.
There don't seem to be any particular symptoms that give a good clue to an AVM's presence. Frequent headaches are pretty common. Since everyone is different, I will just have to tell you my story.
I was diagnosed about 2 years ago with atypical migraines. I didn't have many headaches at the time, but was loosing visual acuity in my left eye, and often had a flickering "halo" of light and darkness around my visual field. Imitrex seemed to help most of the time, thus the atypical migraine diagnosis.
It was in February of this year that I wake up one Saturday morning with a noticeable decrease in visual acuity in my left eye, more of that halo effect, and a definite feeling that something was wrong. When a blood vessel burst in the white of my left eye, I went to the hospital emergency room. There they quickly decided the burst vein was nothing serious, but couldn't figure out why the decrease in acuity, or why things seen through my left eye looked more yellowish. I was referred to an eye specialist, who took time off from moving between offices to check out my eyes.
Nothing significant could be found.
I had been down that road before. There have been times in the past when I felt really sluggish, and that I had lost some muscle control and coordination. And for years, I had had this deep feeling that something was wrong in my brain. There had been bouts of fatigue and slurry speech. And I had never been able to catch a ball, especially if it waw thrown from the side. This was always attributed to being nearsighted. When I had tried to get someone to figure out what was wrong, it had always been written off as being nothing, or to some nonspecific emotional problem.
This time I kept pushing. The loss of acuity in my left eye was demonstrable. But no one had a clue as to what was causing it.
I went back to the eye specialist a few days later, when he had gotten moved, and was given a few more tests. In one of the tests, they had me look at a card with a cross hatch of black lines, and asked me what I saw. I told them, "black horizontal lines, and the vertical lines went black, red, red, gray." I knew as well as they did that there were no red or gray lines, but that was what I saw. They didn't know what to make of that, so referred me to another specialist for an eye angiogram.
That was where I learned I was allergic to flourscene dye. I swelled up worse than an old toad, my eyes bulged, and I nearly suffocated. I'm sure glad they had an emergency kit with Benadryl nearby. I survived, and made sure they got the pictures they were after, because I had no intention of coming back for that test.
After that, in mid March, I was referred to the area's best retina specialist. His conclusion was that there were a few minor problems in my eyes, but all was pretty normal for my age. He asked permission to call a neurologist to make an appointment for me. I was sure glad he didn't say "psychiatrist". In fact, I had already decided to drop the whole thing if he didn't have any ideas.
I saw the neurologist the next week. I had seen him before, when I had a concussion, and felt that he was pretty good. But I was still going to drop it if he didn't come up with anything. He did his exam, and couldn't find anything seriously wrong, but decided to order an extensive MRI and MRA's (magnetic resonance angiograms). He wanted to look at a couple of other things if that didn't turn up anything. So his office made the appointment, and I went to the hospital for that on my next weekday off. (I was working long days, so had 3 days off per week.) There I was told to call the doctor back for the results after a couple of days.
When I called 2 days later, the nurse said the doctor hadn't had a chance to review the results, to call back the next day. I called 3 days later, just to give him extra time, and felt I was getting an unusual response. After putting me on hold for a while, the nurse told me it was too complex for her to explain, could I come in to see the doctor as soon as possible.
Just the type of new you DON'T want to here. That was a very long weekend that followed that call.
When I got to see the doctor, he explained that the radiologist felt I had an arteriovenous malformation, gave an explanation more appropriate to a cavernous AVM, and told me it might not mean anything, but he wanted to have a surgeon check it out. Two days later he called to say that he had called all the surgeons he could find, but none of them in the area wanted to deal with it. I would have to go to a university medical center somewhere, like in Seattle, or San Francisco, or Salt Lake City. He would be happy to make the appointment me if I would let him know where I wanted to go.
I had to think about it for a couple of days, and decided to go to the nearest place, Salt Lake City, a 5 hour drive. I called and told him that, The following week, Dr. MacDonald's office called with the appointment just a week away. I would see the doctor, then have an angiogram done, and could go home the next day.
The angiogram is a whole 'nother story I will write about some time, when the memory is less -- intense. :-)
It took a couple of weeks for the doctor to get back in touch with me. He said they had been able to identify it's location better, and he was confident that surgery was the route to go, and that they could take care of it. He also said there were some things that concerned him, but he didn't want to discuss them until he could see me in person. (And I though, "Here we go again! The news you DON'T want to hear.") So I set up an appoint with his nurse. I would see the doctor in about 3 weeks, and would be scheduled for surgery the next day.
It was just the next day that the nurse called back. The doctor wanted time to pull together all the people he wanted involved, and he also wanted my surgery scheduled on a day when no other surgeries were scheduled. That turned out to be 1 week later, on the first of June. The doctor had also told me that, after visiting with him, I might very well want to cancel the surgery, and that he would certainly understand if I wanted to. That was enough to create an emotional dichotomy, if anything could.
Over the next 3 weeks I did a lot of research. There were only of few technical references at the library. I finally found some things on the Internet, but they didn't tell me much about the subjective experience of a person going through a craniotomy and AVM resection. That's why I'm writing these tomes. There needs to be a source of the subjective experience of someone who had an AVM like mine, and for whom surgery was successful. There are a lot of stories on the net about people who died, or had a different kind of AVM. I don't want to take anything away from these other sources, but feel a need to add to it. Check out some of the links from the main page, or from the end of this update.
Back to the more technical items.
If you have recurring headaches, you could have an AVM. Or migraines. If you have a visual halo, flickering lights, or flickering dark areas in your visual field, you may have an AVM. Or migraines. If you have a pounding in your head, your could have a kind of AVM, or another neurovascular disease. the only way to find out for sure is to have an extensive MRI or an angiogram study.
I have had a couple of brain angiograms and a ct scan in the past. The experts who read the films seemed to note a large blood vessel in the midline between the brain halves, but didn't recognize it as an AVM. I studied the pictures they took here very carefully, and had completely misidentified the AVM. But when the surgeon got the pictures, he thumbed through them quickly, pulled out one toward the middle, put it on the lighted panel, and said, "I see the problem right here." As soon as he pointed it out, it was as clear as day, and unmistakable. My point it, sometimes it takes an expert to recognize the problem. That might be important to keep in mind.
As mentioned earlier, there are many different kinds of AVM's, including inoperable cavernous beasties. I now know a person who has one. But they are all rare. I'm not an expert in any of them, so go see a neurologist, a cerebrovascular surgeon, or even your family doctor if you suspect anything. And do it right away. There seems to be noting you can do or not do to keep the venous portion of an AVM from bursting or bleeding. It does it on its own schedule.
If you have an AVM, or know of someone who does, check out the links we have here. The Cheryl Bradshaw Memorial site is one of the best. And we will add more here as we get them.
I feel like I've written a book. Thanks for hanging in there and reading through it. Later this week, more information about how I'm feeling, the recovery process, and how I feel about it. And, as always, write with any comments or questions, or any spelling or grammar errors. My vision is still pretty fuzzy, and I know a lot of errors are getting by me.
--Kyle
Update July 7, 2000, at 1:30 pm.
Still making over-all improvement. The ability of my brain to process vision has improved, but my general vision has stayed about the same.
I saw an optometrist yesterday, It was my first outing out by myself, and that made it exciting. The news wasn't bad, but not so exciting. The nerve heads in the back of my eyes are still badly swollen, and the swelling has caused ruptures in the blood vessels in my left retina. All of which is normal, given the kind of surgery I had. But it will take 3 to 6 months for the vessels to heal, and then I will should start to see significant improvement in my vision. That was a bit of a downer, but at least I know a little bit better what to plan for, and why I'm not seeing much improvement right now.
The doctor also tripled the power of my glasses. That was for the right eye. I don't know what he did for the left eye, but he finally got it to where I could just make out the big "E" on the chart.
It seems that I'm still trying to recover from having my eyes dialated. I can't see nearly as well today. But I feel better over-all.
This is a little harder to do today, so I will keep it short. We'll try t have another update by next Tuesday.
--Kyle