Hang on! We're working on this. (Kyle wrote this before he left)
I will be meeting several family members at the doctor's office in Salt Lake City on June 1. Surgery is scheduled the following morning.
It seems like the date has been a long time coming. The doctor said he was uncomfortable with some things he saw in the angiogram results, and wanted to take his time to get together the people he wanted around during and after the surgery. He also rescheduled to June 2nd when he realized he had another surgery to do on the earlier date. This is supposed to be a long procedure, so he didn't want anything else on the agenda for that day.
The risks in waiting are not that great. As I understand it, the biggest risk is that the AVM will start bleeding, or burst. That risk increases around 4% per year, so shouldn't be that bad, yet.
The headaches and visual disturbances have increased, though, so I had to quit my job the last of April. That was both a relief and a disappointment. I miss working. I miss the people I had gotten to know on the job. And the days can seem kind of long at times now. But I was struggling awefully hard to find that crazy little mouse cursor on the computer screen. And the headaches made it difficult to focus at times. Then there was the mental cloudiness that often went with the headaches or flashing lights. Forget about multitasking.
Several people have asked what exactly I have. I'll give you as much of a description as I have at this time.
There is a place in my brain where an artery and a vein are directly connected by a short, tangled mass of, well, little veinlettes or arterylettes. It was measured about six weeks ago through MRI at about 1 cm by 2 cm. That's not very big. But it looks like a big hole on the MRI pictures. It's located on the right side of the midline, the space between the two halves of the brain, by the part that deals with vision. Now, the word "space" here is a relative term. Except where arteries and veins and other things go through, there really isn't any space, just a separation of brain spheres, which are side by side. So, this artery-vein thingy is actually pressing against the brain tissue, especially on the right side. That can account for the headaches and some of the vision problems. It tends to get larger with time. That's part one or the problem.
Part two comes in when you consider that arteries carry blood under pressure. The blood goes through high resistance capillaries, which drop the pressure. So, by the time the blood gets into the veins, the pressure is about gone. That's why arteries have the thick, muscular walls, and veins don't. Veins don't have to handle pressure, and aren't designed to. In my case, that short, little, tangled mass of tubes carries high pressure blood directly from the artery to the vein. And it's not designed to handle that. In fact, as I understand it, that tangled mass is the body's way of trying to deal with it. But the end result is that the pressure is too much, and the tubes and vein swell, eventually start leaking, or burst. It causes what the doctor refers to as a "catastrophic event"(!! -- an understatement? I prefer the phrase "and your brain blasts itself to pieces! OK. so I've got a weird sense of humor.).
The third part is not better. While all these other things are going on, parts of the brain may be starving. As I mentioned earlier, blood usually runs through capillaries, where all the nutrient and gas exchanges take place with the surrounding tissue. Capillaries offer a lot of resistance, because they are so small that blood cells have to go through in single file. So, when a direct connection exists between artery and vein, the blood follows the path of least resistance. The vein "steals" the blood supply. This is probably what leads to most of the visual disturbances, like flashing lights, loss of peripheral vision with a flickerin halo, and flickering dark spots in the middle of my visual field, and poor visual acuity in my left eye. (Although the AVM is on the right side, everything crosses over in the brain, so my left side is most affected).
The doctors say it is only a matter of time until something really bad happens. The risk is 2 to 4 per cent per year. It could be many years until it happens. It could be tomorrow. In terms of medication or restricting activities, there isn't anything known to make any real difference. When the AVM decides to blow, it will blow, no matter what I'm doing or not doing. The only real solution is surgery. There are 3 types, radiation surgery, where they try to give just the affected area a radiation burn, and hope is peals off or otherwise goes away (takes 2 years), angiosurgery, where they run a tube up the artery to the avm and shoot a kind of super glue into it to clog it up, and regular neurovascular surgery, where they cut a hole in your skull and physically cut the thing out, trying to not do too much damage in the process. As I understand it, the radio surgery has the highest survival rate, but the lowest success rate, with unknown long term effects. Neurovascular surgery probably carries the highest risk, but is most successful in resolving the problem once and for all, the first time.
Sometimes a combination of these are used. My doctor, who as a neurosurgeon is partial to the cutting part, will be filling me in more on the procedures they've decided to use, on the 1st.
Meanwhile, what I do know is that I'm in pretty good shape for the procedure, so am looking at a risk factor better than the normal 10%. These risks include everything from death, to infections, to loss of brain function. My own research is showing maybe a 50% chance of infection or siezures at some point during the 2 weeks following surgery. The first 2 days after surgery seem to be the most critical.
I've been told that I will probably be in ICU for 2 or 3 days after surgery, with a total hospital stay of about 1 week. Then I will probably have to stay in Salt Lake City for an additional week before I can come home. Then I will need 1 to 3 weeks of further recovery before I'm ready to get out and about. Of course, these times could be a lot longer or a lot shorter. My recovery time from other procedures in the past has been right about in the middle of average, so that's what I figure I'm looking at here.
Some people have asked how I'm doing emotionally and spiritually. My answer is, fine. I've had time for the shock to wear off. I'm at peace. Although I'm a real coward when it comes to pain, and I'm told there will be a lot of pain, I'm not particularly worried about it. My affairs are in reasonable order, just in case. And my sister will be there with me, so I'm not worried about being alone. I'm more concerned about everyone else being bored to death.
I am looking forward to my titanim skull cap. I've always needed a good excuse for being "hard headed"! And I'm thinking about all the fun I can have at airports. "Honestly, sir, my pockets are empy! Oh, I forgot, I have this metal plate under my scalp." That should be a real hoot!
Thanks for visiting. My kids, mostly my son Brandon, are setting up this site, and will keep it updated. I'm sure they'll have any major changes posted within a few hours. To learn more about AVM's, visit the link on the main page. And please sign the guest book, each time you visit.
--Kyle