My 13 year old son was recently diagnosed with an AVM on the left front part of his brain. It has not ruptured. We found out about it after he had a “episode” at school. After sprinting hard in gym class he say bright lights and felt light headed. About an hour later he still didn’t feel well and went to the nurses office. When I got there to pick him up he was very confused and couldn’t talk right he also kept saying he need to get out of there and was trying to leave. His hand were stiff and bent. The school personal called an abulance. Finally after an MRI he was diagnosed with an AVM. It is unclear to the doctors if the “episode” was related to the AVM, but they put him on aniseizure meds just in case. To me it seems like they would be related. They are also saying that exersizing isn’t related to the “episode”. Has any one had exersize induced reations relating to your AVM?
Also, his AVM needs to be removed and we have gotten variying opinions on Gamma Knife vs. surgical resection. The first doctor we say only does resection and is against gamma knife in young patients for fear of damaging brain tissue and the risk of bleeding until oblitertion. Any experiences or feed back? Does one cause less side effects then the other?
We got several different opinions on my daughter’s AVM. Our local neurosurgeon first recommended gamma knife but referred out to two places where they do both gamma and surgery, and the consults both came back recommending surgery. Our local surgeon encouraged us to travel to talk to one of the places to understand their reasoning behind the decision, before we made ours, since our surgeon here doesn’t have as much experience with gamma knife as there isn’t a center in Knoxville. We were told by the consulting neurosurgeon, that whenever possible, they choose to resect the AVMs in kids, and reserve the gamma for only the young patients for whom the surgery is too risky. That is why we chose to have surgery for my daughter. There are lots of opinions out there, but from most of what I read, surgery is the gold standard for kids, unless the risks are too high.
Has your son had an angiogram yet? That will be the first step to see exactly what you are dealing with, before they can even recommend treatment. Hope this helps!
Our son has had an angiogram and it looks very similar to the MRI. They didn’t give us much info I guess its a II on the spetzer Martin scale. We did the angio at Mayo Clinic in MN. The surgeon we talked to at Mayo said both procedures have a 95% success rate for my son. My son wants the Gamma Knife, as it is less scary and invasive, but what I read about side of effects from Gamma scare me. The first Neurosurgeon who diagnosed him said he doesn’t recommend Gamma Knife for him because of his age and the developing state of his brain and the continued risk of bleeding. My son is very active in sports and the surgeon from Mayo said he could continue to play sports after the gamma knife surgery. I don’t like that and think it could be dangerous. Did your daughter do rconstruction and gamma knife?
Susan Troop (Lindsey’s Mom) said:
We got several different opinions on my daughter’s AVM. Our local neurosurgeon first recommended gamma knife but referred out to two places where they do both gamma and surgery, and the consults both came back recommending surgery. Our local surgeon encouraged us to travel to talk to one of the places to understand their reasoning behind the decision, before we made ours, since our surgeon here doesn’t have as much experience with gamma knife as there isn’t a center in Knoxville. We were told by the consulting neurosurgeon, that whenever possible, they choose to resect the AVMs in kids, and reserve the gamma for only the young patients for whom the surgery is too risky. That is why we chose to have surgery for my daughter. There are lots of opinions out there, but from most of what I read, surgery is the gold standard for kids, unless the risks are too high.
Has your son had an angiogram yet? That will be the first step to see exactly what you are dealing with, before they can even recommend treatment. Hope this helps!
Rachel, Lindsey’s was also in her left frontal lobe. They also gave us the same 95% chance of successful surgery without permanent deficits. Lindsey had one embolization a day prior to her craniotomy, this past January. She did amazingly well!
I was actually relieved when the other surgeons recommended the craniotomy because I was also worried about the effects of the radiation on her developing brain. Lindsey also had had a bleed, so the waiting period would have been even more worrisome. There isn’t really any right or wrong way to treat. It is not a fun decision to make. We are very glad that we went with the craniotomy because now it is gone, and she is back to all regular activity.
Please let me know if I can help in any way!
Thank you. At Mayo the doctor said his risk for bleeding increased 2-4% every year, even after the gamma surguery until it is obliterated. He has II rating on his AVM, which is on the smaller side. The neuro surgeon, who does craniotomies, is against the gamma knife route due to risk if harming the brain and the continued risk of bleeding. From what I’ve read I have also seen that surgery is recommened over gamma for children with easy access AVMs. It is hard my husband is stuck on gamma. We are just praying for direction and unity in our decsion. Thanks for your advise!
Susan Troop (Lindsey’s Mom) said:
Rachel, Lindsey’s was also in her left frontal lobe. They also gave us the same 95% chance of successful surgery without permanent deficits. Lindsey had one embolization a day prior to her craniotomy, this past January. She did amazingly well!
I was actually relieved when the other surgeons recommended the craniotomy because I was also worried about the effects of the radiation on her developing brain. Lindsey also had had a bleed, so the waiting period would have been even more worrisome. There isn’t really any right or wrong way to treat. It is not a fun decision to make. We are very glad that we went with the craniotomy because now it is gone, and she is back to all regular activity.
Please let me know if I can help in any way!
Pleas know that I am NOT trying to sway you in one way or the other, as only you can make the best decision for your child, and there two good options for treatment. The two other things that went into our decision process, that you might keep in mind, are that the smaller AVMs have a higher frequency of bleeding than do the larger AVMs. Also, if the Gamma doesn’t work 100% you either have to repeat it and wait another 3 years, or face surgery after already trying Gamma and so have the radiation exposure and the risks of surgery.
I know how agonizing the decision is to make as we went back and forth as well! It is especially hard if your husband and yourself are not thinking the same thing. Could you send for a couple more opinions, to try to get a bigger consensus? Maybe that would help your husband, if he is leaning toward Gamma and you toward surgery. More than anything, I will be praying that you and your husband will be in agreement about whichever treatment you choose. Whichever you choose, it will be the right one. Please let me know if I can help in any way.
It sounds like your son had a focal seizure. Very interesting to me, as my daughter had focal seizures and migraines before we discovered her avm(no bleed). then eventually a grand mal caused the testing that showed the avm. The question you’re asking about gamma v. surgery is the million $$ question. Whichever way you decide to go just try to find the best person for that particular procedure. It seems cerebrovascular surgeons will recommend surgery and gamma knife surgeon will recommend g.k. If it’s close to the surface and not too big I would probably go for surgery. My child had gamma(hers was 2.5 x 3.5cm when found)and it shrunk, but not obliterated. Then 3 yrs later we went ahead with surgery and it’s now all gone. I don’t regret doing the gamma knife because it did shrink it, but it was frustrating to have to still deal with it after 3 yrs. She has no deficits, but is struggling with depression that has been going on for about 9 mos. She had surgery 3 mos. ago so…we don’t know the cause of depression. We weaned her off Lamictal(anti-seizure med)about 3 weeks ago. It’s a mystery at htis point. But no more AVM!! so that’s the main thing! Good Luck. It’s a difficult decision.
While my son was not really a candidate for the gamma knife or embolization, we did talk a lot to the doctor about all of the non-surgical options, since brain surgery is a frightening option. No one wants their kid to have brain surgery. What made me stop pursuing the gamma knife was the fact that it doesn’t work immediately, and that your child is still at risk of a bleed for then next two to three years. At least the results from surgery are immediate.
With gamma knife what did they tell you the risk of a bleed was in the latent period? One doctor (the gamma knife surgeon)said his risk of bleeding is 2-4% from the time of diagnosis(so my son would be at 2 to 4% and it would increase 2 to 4% every year. Another doctor said his risk would increase !% every year of his age(so my son’s would be 13%). It is frustrating how all the surgeons differ on these numbers. My husband is really for the gamma knife. I guess the side effects scare me, but crainiotomies have side effects too. During the laten period did your child exersize? My son is very into sports and plays football, basketball and baseball. The gamma knife surgeon said he could continue playing during the latent period. This would really scare me, I would be afraid of more "seizures and bleeds. Any advise on that?
Thanks.
Sandie Alger(Kasey’s mom) said:
It sounds like your son had a focal seizure. Very interesting to me, as my daughter had focal seizures and migraines before we discovered her avm(no bleed). then eventually a grand mal caused the testing that showed the avm. The question you’re asking about gamma v. surgery is the million $$ question. Whichever way you decide to go just try to find the best person for that particular procedure. It seems cerebrovascular surgeons will recommend surgery and gamma knife surgeon will recommend g.k. If it’s close to the surface and not too big I would probably go for surgery. My child had gamma(hers was 2.5 x 3.5cm when found)and it shrunk, but not obliterated. Then 3 yrs later we went ahead with surgery and it’s now all gone. I don’t regret doing the gamma knife because it did shrink it, but it was frustrating to have to still deal with it after 3 yrs. She has no deficits, but is struggling with depression that has been going on for about 9 mos. She had surgery 3 mos. ago so…we don’t know the cause of depression. We weaned her off Lamictal(anti-seizure med)about 3 weeks ago. It’s a mystery at htis point. But no more AVM!! so that’s the main thing! Good Luck. It’s a difficult decision.
I agree with you . They are both scary options and the three year wait after gamma knife would be torture.
Kris Walker said:
While my son was not really a candidate for the gamma knife or embolization, we did talk a lot to the doctor about all of the non-surgical options, since brain surgery is a frightening option. No one wants their kid to have brain surgery. What made me stop pursuing the gamma knife was the fact that it doesn’t work immediately, and that your child is still at risk of a bleed for then next two to three years. At least the results from surgery are immediate.
I have never heard of exercise being a factor with avm’s, but I’m certainly no expert. That would be a good question for the doctor. And the stats are hard to follow I agree. I was told 4% risk of bleed per year, but not that you add another 4% each year. It’s kind of like rolling a dice…each time there is a 1 in 6 chance of getting a 6, but it could come up right away or not after 20 tries…the chance still remains at 1 in 6 though. I totally understand your concerns about your son. My child was 16 and rode/jumped horses. I was a bit freaked out. I just had to remind myself that she already participated in those activites her whole life-the only difference being that we didn’t KNOW she had an avm and now we do. But let’s talk about surgery…everyone has a different experience, but I’ll tell you what it was like for our child. She has long hair, they only shaved a vertical path where the incision would be made which made her very happy. The incision was a straight line about 6" long. Her avm was further back…the surgery was right behind her left ear. Anyhow, the surgery lasted 3 hrs and when she came to recovery she had no deficits whatsoever. She had trouble doing math though. haha but she was pretty drugged up. They do lots of neurological tests before and after surgery. They asked her questions, had her perform tasks like holding up fingers and writing a sentence, etc. Everything was working fine and we were thrilled! She had a lot of head pain which miffed the doctors because they said some people only need Tylenol. She needed morphine! I read about the pain and found that it varies widely due to the age of the patient and the location of the incision. She was much better over the next day or two and only spent 3 nights in the hospital. (She would have stayed 4 but her little brother was in another hospital with a ruptured appendix…go figure). After a week you would never know anything she had gone through. She was totally fine albeit tired. She slept more than usual. Her head looks perfect too.
So, what I’m saying is that the thought of brain surgery is freaky, but all in all it’s amazing what they can do. And you have to consider that these great doctors do it every single day.
I forgot --one more thing—my child has only had 2 grand mal seizures. They 2nd one occurred when she was standing for a long time in the hot Florida sun. She wasn’t exercising, just watching a horse show. This was 2 mos. after gamma knife. She never had another one, but we also upped her dosage of anti-seizure meds. So getting overheated COULD be the cause-we will never know.
Susan,
Thank you for mentioning the fact that smaller AVM’s are more likely to bleed. I believe there is a misconception that larger AVMs are more dangerous.
Rachel,
I too think your son had a seizure.
As for gamma vs. surgery, I have the unique position of being familiar with complete obliteration from cranio and gamma (although they have not been obliterated yet through the gamma knife procedure)
I had surgery 25 years ago to remove my AVM and right now my 2 daughters are approx 1 year post gamma knife. We have the genetic form of AVM called HHT. Anyhow, if I could have chosen surgery for my girls I would have. Unfortunately they were not candidates due to the location of their AVMs.
When I had my surgery it was 2 weeks of pain, 2 weeks of being unable to speak, several months of recovery and baldness but when it was all done that was the end of it. I have headaches still but doctors marvel at the fact that I have no visible impairments.
Now my daughters, while they did not have to go through being bald and the pain of surgery, are constantly feeling ill. Once they hit the 6-7 month mark they started getting headaches, nausea, vertigo and more. It is several times a day, sometimes all day and they are really suffering. I practically live at their school because the nurse calls me anytime they show up at the office.
Other people may have different experiences with both but for me I think the surgery was easier. I didn’t even get in to the fact that we also don’t know yet how successful the gamma was. They may need a second surgery if the AVMs don’t shrink. They are small so easier to shrink but they have multiple AVMs, some of them very deep in the brain.
Good luck with everything, hope this helps.
Christine
I do believe that the bleeding risk is cumulative. That is why they feel treatment is necessary for kids, because their lifetime risk of a bleed is nearly 100%. We were given the same 2-4% per year statistics. As for exercise, like everything else AVM, there seems to be a difference of opinion with different surgeons. Lindsey wasn’t allowed to do any exercise at all, nothing that would raise her blood pressure. She couldn’t participate in PE at school, or recess. Those restrictions remained in place until 3 mos. after her craniotomy. I know there have been others with the same restrictions and some without. I’m sure it was especially because she had already had one bleed, but I do think that increased blood pressure can be a negative thing with an AVM until it is treated. It very well may not be a problem after gamma, but I don’t know. That was on our list of questions to ask the surgeon if we went that route. I sure wish it was an easy decision to make! Nothing about AVMs is easy!
I’m not a doctor, so I’m just giving my opinion and what I know from researching my own AVM and my mom’s bout with cancer which included radiation therapy. Radiation hardens good AND bad tissue, it doesn’t discriminate and it takes a couple years to see if it worked and the avm can still rupture during that time. And then what happens if it doesn’t work?? More Gamma Knife!! But a good thing about that is that the tools get more precise and less risky as years go by. But it is 72 beams of radiation focused directly on the AVM to “dry it up” but whatever brain tissue it has to go through to get to the AVM might also harden and “dry up”.
Resection completely eliminates the AVM (I don’t want to talk about it ‘growing back’ but it possibly could). But just opening the skull itself is a very risky thing and then add to that the removal of the AVM and whatever complications arise from that.
Thankfully, mine was in a relatively easy place to get to in the back of my brain, they didn’t have to go digging around in any brain matter… So resection was an easy choice.
As to whether or not that exercising episode was related and the doctors can’t really say for sure, yeah right. It sounds like something abnormal and if not the AVM, then WHAT EXACTLY caused it??? The exercise got his blood pumping fast and this is my way of explaining the avm to people, think of trying to suck up some liquid through one of those crazy straws with lots of loops and whatnot. It’s tough to do normally, but try to do it fast like your body (heart and brain!!) would need to during a hard exercise and it becomes much tougher!!
Good luck with your decision!!
Welcome to the group. It’s a heart wrenching decision to make. At 13, I think your son should have a strong voice in which route to take–it is HIS head after all. Just help him work through the decision process and make sure he’s basing his decision on factual info. At 13, I feel you can veto what he chooses, but this can be a great life learning experience for him.
One advantage we felt we had in Chari’s AVM treatment was the center we chose had a TEAM that included surgeons, Drs that did embolizations, and Drs that did radiation. I felt we got the best info from them on a course of treatment.
Kids heal quickly! Our son had conventional brain surgery at 18 or 19 to remove “hot spots” in brain that were triggering seizures. They opened him up, placed an electrode grid on his brain, then did testing/monitoring for about 10 days to determine areas of good activity vs bad activity. Then they removed his amygdala. He was in ICA for about 2 days, a normal room for 1-2, then discharged! He was up walking around with little pain–most of the pain was the 60 some staples in his scalp. Obviously, he had to take it slow til his skull healed, then no restrictions.
Hope this helps.
Ron, KS
THank you so much for sharing your experiences. I have read that the smaller AVMs are more likely to bleed, but the neurosurgeon at Mayo said that different studies show that the larger ones are more likely to bleed. I’m so confused about the whole thing. The thing I like about the crainiotomy is that once you have healed from the surgery it sounds like you can get back to your normal life quicker. I’m still very confused and contemplating getting another surgeons and gamma knife drs opinion. I just don’t know if that will make me more confused!
Christine said:
Susan,
Thank you for mentioning the fact that smaller AVM’s are more likely to bleed. I believe there is a misconception that larger AVMs are more dangerous.
Rachel,
I too think your son had a seizure.
As for gamma vs. surgery, I have the unique position of being familiar with complete obliteration from cranio and gamma (although they have not been obliterated yet through the gamma knife procedure)
I had surgery 25 years ago to remove my AVM and right now my 2 daughters are approx 1 year post gamma knife. We have the genetic form of AVM called HHT. Anyhow, if I could have chosen surgery for my girls I would have. Unfortunately they were not candidates due to the location of their AVMs.
When I had my surgery it was 2 weeks of pain, 2 weeks of being unable to speak, several months of recovery and baldness but when it was all done that was the end of it. I have headaches still but doctors marvel at the fact that I have no visible impairments.
Now my daughters, while they did not have to go through being bald and the pain of surgery, are constantly feeling ill. Once they hit the 6-7 month mark they started getting headaches, nausea, vertigo and more. It is several times a day, sometimes all day and they are really suffering. I practically live at their school because the nurse calls me anytime they show up at the office.
Other people may have different experiences with both but for me I think the surgery was easier. I didn’t even get in to the fact that we also don’t know yet how successful the gamma was. They may need a second surgery if the AVMs don’t shrink. They are small so easier to shrink but they have multiple AVMs, some of them very deep in the brain.
Good luck with everything, hope this helps.
Christine
WEll the Gamma Knife surgeon thought he could exersize after gamma knife and said that if it hasn’t bleed so far there’s no proof that exersizing would cause it to bleed. The part of the equation that he didn’t consider is that he had a “seizure” right after running hard for a long period in gym class, I mentioned this to the surgeon and he said…well there’s not proof the "seizure is related to the AVM…talk to the neurologist about that. So basically I don’t feel comfortable with his answer.
Susan Troop (Lindsey’s Mom) said:
I do believe that the bleeding risk is cumulative. That is why they feel treatment is necessary for kids, because their lifetime risk of a bleed is nearly 100%. We were given the same 2-4% per year statistics. As for exercise, like everything else AVM, there seems to be a difference of opinion with different surgeons. Lindsey wasn’t allowed to do any exercise at all, nothing that would raise her blood pressure. She couldn’t participate in PE at school, or recess. Those restrictions remained in place until 3 mos. after her craniotomy. I know there have been others with the same restrictions and some without. I’m sure it was especially because she had already had one bleed, but I do think that increased blood pressure can be a negative thing with an AVM until it is treated. It very well may not be a problem after gamma, but I don’t know. That was on our list of questions to ask the surgeon if we went that route. I sure wish it was an easy decision to make! Nothing about AVMs is easy!
Thank you for your advise. I feel like we are limbo now, because we really havn’t decided on a doctor yet, since we don’t know the treatment route we want to go. The gamma knife surgeon we talked to was breif and didn’t make it easy to ask him questions…so we still have a lot of questions. I’m so glad your son recovered so quickly! It’s just hard becuase my husband and I are’t on the same page for which route to take. Maybe a 3rd opinion with someone who can answer more quesions would be wise for us.
Ron, KS said:
Welcome to the group. It’s a heart wrenching decision to make. At 13, I think your son should have a strong voice in which route to take–it is HIS head after all. Just help him work through the decision process and make sure he’s basing his decision on factual info. At 13, I feel you can veto what he chooses, but this can be a great life learning experience for him.
One advantage we felt we had in Chari’s AVM treatment was the center we chose had a TEAM that included surgeons, Drs that did embolizations, and Drs that did radiation. I felt we got the best info from them on a course of treatment.
Kids heal quickly! Our son had conventional brain surgery at 18 or 19 to remove “hot spots” in brain that were triggering seizures. They opened him up, placed an electrode grid on his brain, then did testing/monitoring for about 10 days to determine areas of good activity vs bad activity. Then they removed his amygdala. He was in ICA for about 2 days, a normal room for 1-2, then discharged! He was up walking around with little pain–most of the pain was the 60 some staples in his scalp. Obviously, he had to take it slow til his skull healed, then no restrictions.
Hope this helps.
Ron, KS
Thank you. It sound like my son’s AVM is in an easy access part of his brain as well. It is in his front left lobe and close to the surface, so both the gamma knife doc and the open brain doc think that is a good thing.
Nicole R said:
I’m not a doctor, so I’m just giving my opinion and what I know from researching my own AVM and my mom’s bout with cancer which included radiation therapy. Radiation hardens good AND bad tissue, it doesn’t discriminate and it takes a couple years to see if it worked and the avm can still rupture during that time. And then what happens if it doesn’t work?? More Gamma Knife!! But a good thing about that is that the tools get more precise and less risky as years go by. But it is 72 beams of radiation focused directly on the AVM to “dry it up” but whatever brain tissue it has to go through to get to the AVM might also harden and “dry up”.
Resection completely eliminates the AVM (I don’t want to talk about it ‘growing back’ but it possibly could). But just opening the skull itself is a very risky thing and then add to that the removal of the AVM and whatever complications arise from that.
Thankfully, mine was in a relatively easy place to get to in the back of my brain, they didn’t have to go digging around in any brain matter… So resection was an easy choice.
As to whether or not that exercising episode was related and the doctors can’t really say for sure, yeah right. It sounds like something abnormal and if not the AVM, then WHAT EXACTLY caused it??? The exercise got his blood pumping fast and this is my way of explaining the avm to people, think of trying to suck up some liquid through one of those crazy straws with lots of loops and whatnot. It’s tough to do normally, but try to do it fast like your body (heart and brain!!) would need to during a hard exercise and it becomes much tougher!!
Good luck with your decision!!