Hey everybody,
I would just like to hear from people who have experience with Gamma Knife. I am wondering if most people have any health concerns such as seizures after this or if they were totally fine from the Gamma Knife. My doctors have recommended that I have Gamma Knife done and I am quite worried that it may cause me more harm than good as I am "healthy" otherwise and not showing symptoms.
Do a little research and look at the recent “ARUBA” results. It was a clinical trial of, A Radomized trial of Unrupturd Brain Artervenous malformations. Talk to your doctor about it. The preliminary results are suggesting that “medical management” is superior to “invasive treatment”. Good luck.
Thank you Dana, I will look into it.
On the subject of the Aruba Trials, my understanding is that trial has stopped. It was briefly discussed here. Honestly, I don't know much about it, but I thought some medical group was going to come out with a public statement about the trial, it's stoppage, and what it found, if anything. In any case, if you put any faith in the ARuba study, I'd ask your DR for his opinion.
Having said that, my wife had Proton Beam Radiation, which I "think" (not really sure) is very similar to Gamma knife. She had PBR done twice. The plus side of radiation is it's minimally invasive, I doubt anyone dies from the procedure or even has any adverse reactions at the time of treatment. The minus side is it is SSSSSSSSSSSSSSLLLLLLLLLLLLLLLLLOOOOOOOOOOOOWWWWWWWWW to fix an AVM, and often has to be used in conjunction with surgery and/or embolizations to be effective in killing an AVM.
As you probably know, the radiation shrinks the vessel walls and toughens them, both good things to do to an AVM.
After her first PBR, which a subsequent DR told us was at low dosages (less risk to patient, but also less effective on the AVM), there was no change according to scans, so we opted for more treatment.
Minimal loss of hair, combover worked fine for her.
Hope this helps.
Ron, KS
Thanks for the reply Ron, I hope her AVM disappears soon!:) I had an embolization at 11 days old as the AVM was causing heart failure and a stroke but they were unable to get it all. They opted out of a second surgery as I was too young and the area was too small. Basically I have no real after effects from anything that happened thankfully, most of the health concerns were fixed when i was quite young. Now at 20 they want to use Gamma Knife as it is the only thing that will "fix' everything as I have parts that are unoperatable. I didn't really have the greatest experience with this as I found out 2 years later than I was supposed to find out as they never contacted me. They also have no records to see it has even grown over the years (I was switched to an adult hospital at 18). So I'm just worried that they are making this decision without knowing everything about my case. I have heard both negative and positive about the surgery and it sounds like right now my options arent the best either way right now. They seemed pretty big on getting this surgery, I just don't like the idea that it can cause seizures or things to that nature :S
Hi Alicia,
I had to really give this some thought of how I would answer your question. As I did have G.K. I'm thinking - If I had a daughter your age. Whom I love very much and I want her to stay around for awhile and live a good life. What would I tell her? This is what I think I would say:
The fear of seizures and possible side effects is why I turned it down the first time it was offered to me. That was in 1991, I was only 29 then. My drs gave me a 50/50 chance of it bleeding or rupturing at any time. Even in my sleep. I was also told I had a 50/50 chance of being dead or disabled from it within 20 years. I lived knowing that till I finally agreed to have it done in 2007 because, my AVM became symptomatic (seizures and such)and it got larger. I didn't tell you this to scare you, this was my situation only. I shared this with you to let you know you need to be well informed about your AVM, it's location and the risks involved in not having it treated. Knowledge is our tool in helping us to make a proper decision (wink & smiles).
This is a tough decision for anyone to make. You kind of have to weigh the pros and the cons of it. You also need to take in consideration - What if you don't have it done and it bleeds? Are you willing to take that risk? The type of risk depends on where the AVM is located and what could be affected by it. Yes - There is a chance of side effects from G.K. but, it's usually a very small percentage. There's also a chance that you may not have any. I know of many people who had no problems from it at all. One of them runs marathons now. I could never do that even when I was younger (laughing).
I hope this helps,
Ben