The smaller it is the easier and more options you have to treat it. “The AVM can slowly grow over time” If it dose bleed yes it can cause death or disability and/or your options and prognosis may rapidly decrease.
I don’t know your AVM grade size etc but you are lucky like myself it hasn’t bleed yet and I’m not saying that it will but I would be getting lots of opinions before choosing to ignore it. I’m defiantly not going to ignore mine. Here is a good before and after Gammaknife AVM that was treated, gone in less than 2 years. I wish you the best. Feel free to ask me any questions
“The smaller it is the easier and more options you have to treat it.”
This not a true a 100% ture statement. Smaller AVM can have a high % of bleeding due to higher blood pressure in side of the AVM. In some cases larger AVM can have a lower chance of bleeding due to blood pressure being displaced in the larger AVM. In other words Location (how close to a main artery), Feeders (Arterys leading into), draining vaines, and size all play into this rateing system. They also take into account your blood pressure. I’m just trying to keep things clear and not step on any ones toes.
My AVM did not bleed because of the draining vaines enlarged to the size of a penny. God was looking out for me.
Brett Dalbeth said:
The smaller it is the easier and more options you have to treat it. “The AVM can slowly grow over time” If it dose bleed yes it can cause death or disability and/or your options and prognosis may rapidly decrease.
I don’t know your AVM grade size etc but you are lucky like myself it hasn’t bleed yet and I’m not saying that it will but I would be getting lots of opinions before choosing to ignore it. I’m defiantly not going to ignore mine. Here is a good before and after Gammaknife AVM that was treated, gone in less than 2 years. I wish you the best. Feel free to ask me any questions
I am going through something similar. I found out about mine through an unrelated MRI, I am 25 years old, and have had this thing my whole life. One of the many risks about getting mine removed would be vision loss and some other cognitive problems, and I have been asking myself the same question. I am getting it removed, but sometimes I don’t even myself know why. I don’t want it to just one day start bleeding and cause MORE problems, but at the same time the risks of the surgery and such are just very daunting and scary. And it is hard to make this kind of decision. I think most everyone who has found theirs without it bleeding first have and do feel the same way.
Because of the way we found mine, I feel personally like I should have it removed, and whatever comes after that, is what is meant to be I guess. But that is just me.
My story is nearly identical. My AVM was discovered 22 years ago. At that time, the specialists said the risks of treatment were greater than leaving it alone and watching it. In 1995, I had a seizure; realized that I had one before, when I was in college, but thought I just fainted from getting overheated. Doctor said my migraines were most likely mini-seizures, which must be correct, since the “migraines” stopped after being put on meds. My neurologist referred to me a surgeon who was doing minimally invasive procedures. I was faced with the same dilemma. I was doing well and feeling great, so why risk it? Here’s what my husband and I finally decided.
An AVM is completely unpredictable and may have no warnings. If I had a bleed, I would have little or control over treatment. Getting treatment electively meant I could choose the best doctor in the best hospital in my area, and I could go in under the best of circustances.
I have had a couple of complications, but they resolved within weeks, and they were not nearly as bad as some others in my support group who had bleeds.
Have you made a decision since you first posted?
I didn’t have any symptoms when my AVM was found accidently. I was told I could wait up to 15 years before I would need to do anything about my AVM. I sought out a second opinion and had surgery 2 months later and it was starting to bleed I would of died that day if I wasn’t in the OR having major brain surgery. I say get it removed before it takes your life the sooner the better- it is a ticking time bomb.
Dan, I felt the same way you do when mine was first discovered. My avm was discovered in 1991 and I had no symptoms at all. After I got over the shock of it, I continued to live a normal, active life.....despite my doctors recommendations. Until jan. 2007, I had a gran-mal seizure and some other problems. I had gamma knife in May 2007. Although my avm is now smaller in size, I have more problems now than I ever did. My doctors are uncertain if my "problems" are now from the avm or a side effect of the radiation. I have one doctor who thinks it's from the radiation.
I believe, no matter how you look at it, it's still a gamble either way. I also believe that our biggest fear is death. Once we come to terms with that, we can then live. :) It's a tough decision to make, I wish you well and good luck.
I am in the same boat Dan. What I have learned so far by doing some online research is that a chance of a rupture goes up 1-2% every year.Myself, at 39 am up to close to an 80% chance. That's scary as hell. Especially when the thought of where and when it can happen. Will I be driving and put others in harms way?Etc...I am not crazy about the options to take care of it but at the same time the % chance of something happening is,in my opinion, equally as bad if not worse.So for myself, who is in harms way one way or the other, am leaning towards surgery to obliterate it just to not cause harm to someone else
I must say that I wish I had the option of treatment for my daughter. That doesn't mean we would treat it, but it is nice to at least have an option. My Bailee was diagnosed at age 4 without a brain bleed and her only symptom being contraction of her left leg so that she walked on her toes. The AVM is on her brainstem and they said if worse comes to worse, we could only us radiation treatment (and that is only if she has a bleed and they have to treat it). I agree with everyone, get many opinions and the decision may not be as difficult. But I know as a Mom of a sweet 5 year old, I would love to be able to wake up one day after her treatment to news it was gone! You will do what's right for you and your family.
There ARE other options under "Don't Treat". It could bleed and 1)You have emergency surgery and go on with life or 2) It could bleed with no consequence. Then you're back to deciding whether to treat or not - LOL! I bled in 1975 with no consequence (other than the extreme head pain for about a week). I was treated with steroids. In fact it was misdiagnosed as a small aneurysm. I was officailly diagnosed in 2011. I have no insurance but had possible offers for free treatment. The risks of treatment are greater than the risk of another bleed so I live my life with a bunch of crazy symptoms and trust God with it all.
I did not have any symptoms until the bleed; however, do you really want to live your life in fear?? I don't think people generally die from treatment, especially radiation or angiograms....but I'm no expert. I would get treatment though. Otherwise, you could be somewhere alone etc. when it bleeds, and why risk your life? If there is treatment available, I would definitely get it. It would provide you the relief you need, and spare you long rehab (I had a full year), epilepsy, or death should it bleed. I would definitely seek treatment or at least get the opinions of some neurologist
I survived a bleed from an aneurysm and that is how they discovered that i also have an AVM.Because of the location of my AVM and the structure my doctors have actually advised me to leave it alone for the time being since I do not have symptoms a s of yet. Depending on the location of your AVM, the size and a few other factors treatment could be a great option or it could be a not so great option.
My AVM is still active and I am able to live a normal life and do most of the things that I did before (except heavy weightlifting and scuba diving :P). I try not to live my life in fear or something bad happening to me. It took me a good long while to get to that point but I am slowly getting to where I can live with it without letting the AVM rule my emotions.
