I was diagnosed with my AVM in 2009 and have done nothing after the original MRI, MRA and angiogram. I was told that My AVM, if treated, would require radiation because of it's location. However, none of the doctors have given me a definite course of action. I was ecommendd for a study in which I would either ave the radiation or not and then be monitored. I told them I would rather make my own decision for treatment, but have not done so in the year and a half since this all began. I get intermittent migraines, but other than that I have noticed no signs of the AVM.
So I was wondering ifpeople could share their radiation treatment stories with me and thos wo have never had a bleed or their AVM obliterated coul tell me why they have decided to go that way. Thanks.
You might want to go to the upper right of the screen where it says Search Arteriovenous Malformations and type in Radiation or the type of radiation that you might have. You’ll get more posts than you can read…
Hi Denise I have had gamma knife done twice. My avm was big and needed 2 embolizations and then the 2 gammas. My first treatment i did very good nothing really changed and my headaches stayed the same maybe got a little better. With my 2nd treatment I have had numbness on the top of my head from having the frame put on but its not that bad anymore it has improved a lot since November. I cant really say bad stuff about the radiation but at any point my brian can start to swell and other side effects can kick in. So I just pray thay nothing will go wrong and live my life the best way can andjust wait to hear the words “your avm is gone”. I have been dealing with my avm since 12/12/06. It has been a long hard and depressing road make we all make it throguh it together… Best of luck to you and keep us posted on your treatment plan!
I'm new to this site also;) I have had 2 embolizations and Gamma knife one time!! I'm not done yet but I'm almost finished..You really need to get something done before you have a bleed.I don't want to scare you but an AVM is very serious.I'm only 32 I had my 1st surgery 7 years ago and a few years later had gamma knife.I had a really good experience and the results are finally showing.I still have some headaches but nothing like I use to.I live in Philadelphia,PA and Jefferson Hospital is the best and they have one of the best doctors in the country that specialize in AVMs his name is Dr Robert Rosenwasser.I'm not sure where you are located but I do see alot of people from out of town in his office.
My avm was discovered in 1991. I didn't have it treated (gamma knife radiation) till May of 2007. That's whem my avm decided to remind me that it was still there. I was having gran-mal seizures, migrains, and dementia. Altough I still have it, it is much smaller than it was before. Since I have more problems now than I did before the radiation, I have decided not to have it treated again. For me this was an easy decision, I'm single and I have no kids to worry about.
I believe it is nessesary to keep in mind that just the prescence of an avm can be very dangerouse. There are many people who have had good success with radiation and surgeries, and are now living normal lives.
The way I cope with having my avm is... Well, Let me say, I don't think many people would agree with me. But, I've learned to accept death. And...the idea, that it could decide to rupture today. That today, could be my last day here. This comes easy for me because of my faith. :)
I admire you courage and the desire to make an educated decision about your case. To not get too long winded, I had no symptoms of my avm up until the age of 23. I began to get really bad headaches which I attributed to my menstrual cycle, stress or change in my eating habits. It wasn't until a hemorrhage in which I was admitted to the ER that I was diagnosed. Upon being diagnosed, I was told that mine was too deep in the cerebellum for operation to be a route of being rid of it so my best bet was radiation. I too asked what would be the risk if I chose to do nothing. My neurosurgeons advised me that since I had had the initial bleed, my chances of another one each year would be slightly increased. Since the radiation about 6 months ago I have had another bleed which I'm not sure what caused it except to say that it was "time". Up to this point I have no permanent physical damage but I can tell you that emotionally I am the complete opposite of who I was before discovering my AVM.
I chose to be treated because I didn't want to live in fear of it happening again (although believe me I still do somewhat) but also because I feared that the "ticking Timebomb" would go off again (which as I've noted it has). I'll be honest and say that even now I've begun to wonder what would have happened if I'd done nothing but not enough time has passed for me to know the answer to this question. Prayer helps. Talking to friends and family who want to listen helps. Reach out to maybe a social worker or psychiatrist near you to make a list of the pros and cons (your pros and cons along with those of your health care professionals).
I kind of feel like it's the luck of the draw and that God has a wicked sense of humor :-)
I wish you the best and by all means keep asking questions. I hope this has helped.
I was so moved by your answer and understand completely about what you mean that a way of coping is accepting death or that today or tomorrow or 50 years from now could be my time, or any of our time for that matter. You've inspired me. Thanks Ben Morrell said:
My avm was discovered in 1991. I didn't have it treated (gamma knife radiation) till May of 2007. That's whem my avm decided to remind me that it was still there. I was having gran-mal seizures, migrains, and dementia. Altough I still have it, it is much smaller than it was before. Since I have more problems now than I did before the radiation, I have decided not to have it treated again. For me this was an easy decision, I'm single and I have no kids to worry about.
I believe it is nessesary to keep in mind that just the prescence of an avm can be very dangerouse. There are many people who have had good success with radiation and surgeries, and are now living normal lives.
The way I cope with having my avm is... Well, Let me say, I don't think many people would agree with me. But, I've learned to accept death. And...the idea, that it could decide to rupture today. That today, could be my last day here. This comes easy for me because of my faith. :)
Thank you all for your advice. I will give you a little more background information since I failed to do that in my initial post. I am a 30 year old mother of 3 boys, ages 3-10. I am married. My AVM was found on a complete fluke. I had a lot of accidents in a short time frame, which my ENT noticed due to frequently seeing me with a different cast. She sent me for an MRI to rule out MS, and that's when the AVM was discovered. It is located very deeply between the two hemispheres, so of the nuerologist, radiologist and AVM specialist that have seen my charts, all agree that focused radiation would be the best treatment option, should I choose to go that route. All also indicated that I could nothing as well, unless it begans to bleed. Since they all agreed that they were evenly split as to what I should do, I have kind of waited and studied but not rushed into a decision.
In the past few months I have began to have severe, migraine-like, headaches. I had these when I was a teenager and then they stopped for 10-12 years. Well, now every time I have one, my husband goes in to panic mode and worries that I am having a bleed. I do not want to put him through torture like this, but I don't know what to expect from the radiation and I'm sure that will worry him as well.
Everyone with an AVM has to make their own decision about treatment if it is an option and be comfortable with it. Once you’ve made that decision, it is by definition the RIGHT decision for you.
Briefly, my wife’s AVM showed up via seizures when she was about 40. The kids were like 7 and 8. Her’s was also large and deep. In the ER on the 1st day we’d heard of “AVM”, they weren’t sure if her’s would start bleeding, but they told me if it did, it would require immediate surgery. IF (the big IF) she made it through surgery, there was a very high risk she would have severe deficits, and we’d be stuck in Omaha (we were on our way to a vacation in Minnesota) for up to 90 days.
She stabilized and didn’t have any more seizures, so after about 3 days, they cut us loose to drive home, with an appointment with a local neurosurgeon set for the next morning. He also gave us the same prognosis, saying he’d only operate if her’s bled and she was going to die anyway, but the risks of bad things was very high. His words were “timebomb” and “live your life as best you can”.
Later, working with neurologists on anti-S meds, we learned of radiation and went that route. Although it didn’t appear to shrink the AVM, in followup visits at Stanford, where they’ve treated bunches of AVMs, their team said they could do embolizations and potentially fix it. So over the course of about 4 years of doing embos, more radiation, and finally microsurgery, they pronounced her AVM GONE. This was about 10 years after her’s first showed up.
For us, out of all the treatment options, the radiation was the least risky. We feel, looking back, that it bought us more time, and in that time the medical advances turned her AVM from not curable to curable. The other thing that swayed us to act was the fear that if it bled, you would have to do surgery right then, right there, wherever you were. We didn’t want to risk having surgery by someone who’d only read about how to do brain surgery. Where we live, skilled brain surgeons might not be within 250 miles…
My daughter is four and was diagnosed this month with AVM. Because of other malformations in addition to the AVM the doctors simply want to do nothing but monitor it for growth or shrinkage. I wonder if this is possible in adult cases also?
The doctors recommended Gamma-Knife vs surgery to treat my husband's AVM due the size of the AVM (1cm). Eventhough it bled (that's how it was discovered), and he had craniotomy to remove the clot, he had a very successful GK treatment. As of sept. 2009 AVM is no longer visible.
I didn't find this site until my husband was in recovery. We did not have time to do any research. So I think you're in the right track!