Hello, I’m new to this site and am writing on behalf of my boyfriend, Eric.
Prior to the discovery of his AVM, he had an acute onset of severe headaches but there was no bleeding or stroke. Due to size of Eric’s AVM (approximately 4.5 cm) initially, Gamma Knife was not an option. Instead, treatment was to perform several rounds of embollizations followed by surgery. However, after 4 rounds of embollizations over the last 5 months, his AVM has shrunk in size (approximately 2.5-3 cm). Today we met with his neurosurgeon in preparation for his surgery and discovered that Gamma Knife is now a possiblity.
His surgery is scheduled in two weeks, for April 6th. Eric is 30 years old, in relatively good health. He handled the embollizations extremely well with no bleeding or stoke.
I understand it comes down to a personal decision after weighing the options. But I would like to get some feedback on those of you who have had surgery or undergone Gamma Knife, to help us make our decision.
This is a very personal and agonizing decision. I spent many hours crying and researching trying to figure it out for my son. He had several embolizations and has had two crainiotomies. Many on this site have had radiation. For me what determined my choice was several things: crainiotomy is immediate, with radiation it can take up to three years and during that time their is risk of bleeding; Andrew is 12 and they say if surgery is possible on someone that age that is how you should go; the location of the avm and if there is damage what would the deficits be (Andrew’s would have been right sided with good prospect for recovery); Once raditation is in your head it’s there and it comes with risk and complications, too.
Hi Melanie! My daughter is scheduled for her 3rd Gamma Knife April 8th! She’s only 12 and every case is different meaning every option is different along with every decision is different. The doctor says Jaclyn’s AVM is inoperable since it’s deep in her brain and a craniotomy would be too risky since she has had no damage to this day. My daughter has been fighting her AVM for 6 years and we are still waiting for the Gamma Knife to do it’s job completely. A craniotomy in her case would be too risky as she could lose part of her sight. Ask the doctor…“What would you do if my boyfriend was your family member?” Just ask the doctor the benefits and risk factors of each procedure. I can say that I know that Gamma Knife is no gauruntee. Good luck with everything and welcome to this site! It’s wonderful!
Kim is right ask your doctor what he/she would do, but also know their answer is coming from their experience. It never hurts to get opinons from doctors in different areas. Search for doctors that specialize in vascular malformations. Even if they aren’t who you go to it is helpful to have the opinion of several experts. Hope some of this helps and doesn’t just muddy the water even more.
Having options is wonderful, but sometimes that makes is that much more confusing! I can only speak for my husband (who does not speak for himself because he does not write in english very well) - he opted for the surgery although it sounded like the most frightening option, he did it because his neurosurgeon told him it was the definitive treatment and he 100% trusted the guy. He was 28 years old at the time (now 30) and in good health although has always had a very irregular heart beat. He was up and out with friends 1 week after surgery. That actually had me worried. And other than I find him a bit more quick to anger than before, he has no other side effects.
This is an incredibly agonizing decision. Here is my personal take on it. I chose gamma-knife, but if I had to do it again I’ll probably go with surgery. Why? Because gamma-knife takes a toll on you emotionally. It’s two years of anxiety, knowing that this lesion could rupture anytime. It was a very stressful time and I am still recovering. But there were two factors: I think I was a sensitive person to begin with so the stress was more likely to affect me and I had a bleed so the memory and trauma was very real and clear. If your boyfriend hasn’t had a stroke then maybe the 2 years of waiting won’t bother him.
Also, I chose gamma because I wanted to get back to school and didn’t want the downtime. If your boyfriend can take time off, then consider that too.
Again, your mileage may vary. This was just my experience.
Thanks for sharing your husband’s experience. It definitely was comforting considering we are leaning more towards surgery.
Due to Eric’s age, health, and the size and location of his AVM, his surgeon felt that he was the ideal candidate for surgery. His surgeon specializes in AVMs and is widely reknowned in our area so we do trust his ability to sucessfully perform the surgery. However, as you mentioned, surgery is frightening but it is also appealing since it is definitive and enables us to move forward.
Kat said:
Melanie,
Having options is wonderful, but sometimes that makes is that much more confusing! I can only speak for my husband (who does not speak for himself because he does not write in english very well) - he opted for the surgery although it sounded like the most frightening option, he did it because his neurosurgeon told him it was the definitive treatment and he 100% trusted the guy. He was 28 years old at the time (now 30) and in good health although has always had a very irregular heart beat. He was up and out with friends 1 week after surgery. That actually had me worried. And other than I find him a bit more quick to anger than before, he has no other side effects.
Thanks for sharing your experience. I really appreciate your honesty…that if you could do it all over you would have chosen surgery. It definitely helped put things in perspective.
Eric is an incredibly strong individual. However, while he doesn’t show it, I can tell this ordeal is beginning to take its toll emotionally. While Gamma Knife has some advantages, the thought of prolonged treatment taking years to become effective is disheartening. Not to mention the stress and anxiety from the constant worry of a bleed…I fear it would be too much for both of us. I also worry about the excessive exposure to radiation with Gamma Knife. From the embollizations alone he has already shown some adverse affects from the radiation such as losing a considerable amount of hair.
All in all, the more we weigh the risks and advantages of each, the more we are in favor of surgery.
Ben Munoz said:
This is an incredibly agonizing decision. Here is my personal take on it. I chose gamma-knife, but if I had to do it again I’ll probably go with surgery. Why? Because gamma-knife takes a toll on you emotionally. It’s two years of anxiety, knowing that this lesion could rupture anytime. It was a very stressful time and I am still recovering. But there were two factors: I think I was a sensitive person to begin with so the stress was more likely to affect me and I had a bleed so the memory and trauma was very real and clear. If your boyfriend hasn’t had a stroke then maybe the 2 years of waiting won’t bother him.
Also, I chose gamma because I wanted to get back to school and didn’t want the downtime. If your boyfriend can take time off, then consider that too.
Again, your mileage may vary. This was just my experience.
We faced this decision too. Unbelievably difficult. Crazy, actually. Anyway, we got a third opinion and went with that. Gamma Knife. I thought when we’d made the decision, I’d feel this sense of rightness but I didn’t totally because we’re taking that risk of having to wait so it nags at you.
Our doctor said that my son’s AVM treatments- Gamma or surgery- were totally equal in risk. Maybe ask if one treatment is favoured over the other for your husband?
Just so difficult to do this BUT know you are not alone in how you feel. We went thru this before I found this site so I felt totally alone and it was awful.
Thinking of you Melanie.
I don’t understand all this talk about not using the gamma knife for treatments over 3 cm’s. The latest research suggest that with a low dose of the gamma knife (in my case 90% of the moderate dose)there is a high success rate of decreasing the avm to a managable size so that after 3 years another low dose can rid one of the AVM. I was treated by one of the world’s leading neurovascular surgeons and this is in his opinion the only sensble treatment of an AVM over 3 cm’s that is not in an easily treatable place. The problem is that there is not yet a big enough data pool to validate his findings although he plans to publish such data soon. In his experience he has an extremely high rate of treatment with a very low level of mortality. Anyone interested in more info should contact me with their questions.
melanie,
this must be a very hard decision each options having there pros and cons…i cant offer advice as i never had options…i was lucky that i found a surgeon that would do the operation as i was told by 6 others i was in operable and this was bound to claim my life sooner than later…you need to go with what feels right for you guys…good luck
Like everyone else, I agree it’s a personal decision based on the risks of the alternatives – what you’re willing to risk from waiting during GK (assuming it works) and from surgery. Tristin suggested a 2 dose GK after a period of years. I don’t know whether it was the dose I had or just policy, but the neurosurgery-radiation practice at Ohio State said no option of a 2nd dose for me. And no other alternatives, so for me the decision was do nothing or try GK. In the 1st year there’s been no change, but I haven’t 2nd thought my decision. I’d like to be able to spend six months in Mongolia (no neurosurgeons there), and travel around the world - often in pretty remote places --, and have a glass of wine or even think about skiing again. So, the small risk of complications or cancer from the GK are worth the possibilities of doing all I’d like to do before I get to old to do more than just sit.
Hi Melanie!!!
I had about 4 embolizations, and then surgery. All a success. I did have a stroke during one of the embolizations, but it was contained in the AVM-luckily, no rupture. Surgery was an easy decision for me. I n my case, I just wanted it OUT. And I do not think it was small enough for Gamma Knife. Post op, they told my husband that I actually had a small artery that was hidden and kept the AVM going. That would be my only concern with his. My angio’s did not show blood flow of this little artery. Surgery was the best decision for me. Maybe one ? to ask is your particular doc’s success rates for surgery vs gamma knife. How many treatments for gamma knife and over what period of time? I was 31 when I had my surgery…best of luck!
Very personal decision. I couldn’t have anything but a gamma because of the location of my avm. Surgery is a quicker solution but invasive. Gamma takes longer and no way of telling if it will work, you won’t know for 3 years or so if it works or not. I agree with Kim, you really need to discuss further with the doctors.