Congratulations on no more AVM! Hopefully her depression will go away soon! Maybe its part of getting rid of the antiseizure meds she was on. God Bless!
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.
The confusing thing with these risk percentages is I called the gamma knife surgeon’s nurse on Monday to clarify the numbers and she said it was 2-4% from when they are born, so he’d be at minimum 26%, then my husband called yesday, because he didn’t think this was correct and she confirmed with another doctor that it is from when the AVM is discovered, so he’d only have 2-4% risk right now. It seem the correct number would be somewhere inbetween. The gamma knife surgeon did say 95% risk of bleed over his lifetime. I’ve been hearing so much about precentages these last couple of weeks, I guess that will be part of our life for awhile.
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!
My son had a bleed with a left frontal lobe avm 3cm 3yrs ago almost to this date. He had a craniotomy with resection at CHOP (Children’s Hosp. in Philadelphia). Post surgery he had frequent arteriograms which showed some abnormalities but too small for any conclusive results. Well now the general concensus is that he has a residual AVM, 2-3mm in size. We have gone to Jefferson for a consult and they said they could do surgery or gamma. With gamma very little side effects said the Doc, since his AVM is so small. We are now seeing Doc’s out of NYC Columbia Prsby Weill Corneill. The neurosurgeon said that he could operate without any problem if need be… The IR doc’s reviewed my son’s case and we are going back for another consult. It was mentioned an embolization. First we are so sick emotionally, but I keep plugging along and trying to do what is in my son’s best interest. At this time he is playing street hockey, he has no symptons, My gut says if the embo is temporary then we would do surgery, but as the diagnosis is starting to sink in I am not sure if my gut feeling is right. I have a fear of the radiation why I am not sure. We are seing the IR MD tuesday I will keep you posted on our journey. What difficult decisions we are faced with. Today is my sons birthday he is 11 yrs old. I love him to death.
Has any one had exersize induced reations relating to your AVM? Yes in fact that is what lead me to think something was wrong with me. I’m 33 and have high cholesterol so I purchased a mountain bike to try and lower the cholesterol because I did not want to go on statin drugs. I was exerting myself so hard up those hills and when doing so, I would feel lightheaded. Light headed dizzy felling and at one point I almost blacked out as I was sitting falling down for a rest. After this new exersize routine I started having chronic lightheadiness along with other symptoms left side weakness etc. After my AVM diagnosis I explained my episodes on the MB to my doctor and he said it may have been a mild seizures. I’m not sure I’m convinced about that. I have read brain AVMs rob oxygenated blood from where it is meant to go bypassing it away from other parts of the brain. It makes sense to me because if the brain dose not get the oxygen it needs when exersizing etc the symptoms are the same.
I started exercising a lot more in the 6 months leading up to my AVM finding because I wanted to get in shape. Ha ha, I should’ve just stayed on the couch…
Brett Dalbeth said:
Has any one had exersize induced reations relating to your AVM? Yes in fact that is what lead me to think something was wrong with me.
HI Rachel. This is Libby. I’m 51 and have an AVM in the left frontal area. When I was a kid (before the diagnosis) I sometimes had weird experiences of numbness and inability to speak if I really ran or exercised hard. It passed within moments but I know it was caused by exertion and probably not enough oxygenated blood getting to the healthy parts of my brain since the AVM took the blood instead. Now I have seizures, controlled with meds, and when I exercise hard or become emotional or don’t get enough sleep, I’m at risk of a little episode–numbness in my right hand, inability to speak, weird brain feelings. If your son’s AVM is in the left frontal area it may be next to the motor area for the right side of the body like mine is and exercise could effect it. Have you looked into Cyberknife treatments for your son’s removal of the AVM. It seems the least invasive for a young person whose mind is still developing.
Thank you. It does seem that hard exersize may trigger my son’s avm to misbehave or cuase the blood in his brain to not flow properly. Yes we have looked into gamma knife, I don’t know if that is like cyer knife. We are also looking into a crainiotomy/resection surgery. The neurosurgeon, who does the crainiotomy’s thinks the gamma knife has more potential to damage his developing brain tissue than the resection approach. Will you be undergoing surgery for your AVM?
Libby Hoagland Berridge said:
HI Rachel. This is Libby. I’m 51 and have an AVM in the left frontal area. When I was a kid (before the diagnosis) I sometimes had weird experiences of numbness and inability to speak if I really ran or exercised hard. It passed within moments but I know it was caused by exertion and probably not enough oxygenated blood getting to the healthy parts of my brain since the AVM took the blood instead. Now I have seizures, controlled with meds, and when I exercise hard or become emotional or don’t get enough sleep, I’m at risk of a little episode–numbness in my right hand, inability to speak, weird brain feelings. If your son’s AVM is in the left frontal area it may be next to the motor area for the right side of the body like mine is and exercise could effect it. Have you looked into Cyberknife treatments for your son’s removal of the AVM. It seems the least invasive for a young person whose mind is still developing.
Rachel, This is a very difficult decision to make. In reading the previos posts, it reflected back to my childhood and diagnosis at your son’s age. I don’t think I realized or understood at that age the severity of the situation?! I do know, however, the greiving that my mother and father endured. As I wrote in my blog, having an avm to me only meant I had to quit playing football. Disappointing-yes, End of the world-no. When I was diagnosed radiosurgery was not available and my avm is too large for crainiotomy, however given the option, I would choose crainiotomy…by a VERY EXPERIENCED neurosurgeon.(One that specializes in crainotomies only, not both) As Ron, KS mentioned, I believe it is important to have a TEAM. I remember my pediatric neurosurgeon coming into my hospital room saying " Greg, we aren’t going to have to shave your head…" I looked at my parents, thinking ‘What the hell is he talking about?’…Shocked that they were even considering it?! Sorry about the tangent…
As far as exercising goes, growing up I suffered from what I called ‘spells’ but most likely were focal seizures. I would see sparkling lights in my upper left quadrant and ‘zone out’ briefly for about 5-10 mins, then have my visual field cut on the left side for another few mins, followed by a nasty headache. This happened occasionally during practice/games at which time I would take my self to the sidelines til the symptoms passed. I think the intense exercise as well as lack of sleep could often trigger my ‘spells’. At 3cm large, I think ur son’s avm is at the threshold for gamma knife effectiveness. Cyberknife is essentially the same as gamma, minus the head frame and screws. If I could choose between the two, I would lean toward gamma b/c of it’s long track record and b/c cyberknife was originally developed and marketed for lesions outside the brain. The important thing to know is ur son can still have a ‘normal’ life…sports, college, job, etc. and I’m assuming he doesn’t want to be treated any different just because of his newly found avm. Given the option btwn radiation and surgery, I would definitely choose crainiotomy. Thoughts and prayers for your family and son. -GK
Thank you so much for all of the information. Yah, I’m not sure if he realizes the severity of it all, but he has an idea. He hears us talking and he’s been to all of the dr.'s appointment. He’s a bright kid. He does want to get back to normal. What you describe with the exersize and seeing dots and feeling dizzy sounds like what happened to him and I think it actually happened twice in gym class, both times were followed, but what I think was some sort of seizure, he couldn’t talk and was confused. He is on keppra now and that seems to help and he’s not doing much physical activity now. We still need to meet with the dr who does the crainiotomies and go over what he thinks of the angiogram results. He is a very well known doctor and his name keeps coming up in conversations. In the last week I’ve heard about at least people I know or know of who have had brain tumors removed from him and they are all very pleased with him. AVM’s are so rare, I’m not sure how many he has done, but every one I talk to loves him.
Thank you so much for sharing your experiences with us. I assume they got all of the AVM when you had your surgery.
Did you recover fast? Also thanks for the prayers they help more than anything!!!
Greg K said:
Rachel, This is a very difficult decision to make. In reading the previos posts, it reflected back to my childhood and diagnosis at your son’s age. I don’t think I realized or understood at that age the severity of the situation?! I do know, however, the greiving that my mother and father endured. As I wrote in my blog, having an avm to me only meant I had to quit playing football. Disappointing-yes, End of the world-no. When I was diagnosed radiosurgery was not available and my avm is too large for crainiotomy, however given the option, I would choose crainiotomy…by a VERY EXPERIENCED neurosurgeon.(One that specializes in crainotomies only, not both) As Ron, KS mentioned, I believe it is important to have a TEAM. I remember my pediatric neurosurgeon coming into my hospital room saying " Greg, we aren’t going to have to shave your head…" I looked at my parents, thinking ‘What the hell is he talking about?’…Shocked that they were even considering it?! Sorry about the tangent… As far as exercising goes, growing up I suffered from what I called ‘spells’ but most likely were focal seizures. I would see sparkling lights in my upper left quadrant and ‘zone out’ briefly for about 5-10 mins, then have my visual field cut on the left side for another few mins, followed by a nasty headache. This happened occasionally during practice/games at which time I would take my self to the sidelines til the symptoms passed. I think the intense exercise as well as lack of sleep could often trigger my ‘spells’. At 3cm large, I think ur son’s avm is at the threshold for gamma knife effectiveness. Cyberknife is essentially the same as gamma, minus the head frame and screws. If I could choose between the two, I would lean toward gamma b/c of it’s long track record and b/c cyberknife was originally developed and marketed for lesions outside the brain. The important thing to know is ur son can still have a ‘normal’ life…sports, college, job, etc. and I’m assuming he doesn’t want to be treated any different just because of his newly found avm. Given the option btwn radiation and surgery, I would definitely choose crainiotomy. Thoughts and prayers for your family and son. -GK
Diane,
You are contemplating embolization and from what I understand they will need to do surgery as well? I will tell you that in my personal experience the embo was a waste of time and it caused more visible neurological changes than anything else that was done. My daughter was temporarily paralyzed on half of her face and her personality changed after the embo. She ended up having gamma anyhow so I feel it was a waste. The IR dr (who we saw first) was all for it but later doctors (neurologist and neurosurgeon) told us that they would have advised against it. It’s trauma to the brain. If the AVM needs another type of treatment as well then why traumatize the brain unnecessarily?
Rachel,
Please make sure the surgeon is experienced with AVMs. Surprisingly, many neurosurgeons have not seen it or have only operated on a few.
I was told the same thing from several different neurosurgeons, surgery is the first choice especially if the patient is younger. Also, through research that opinion was upheld.
The first surgeon we saw, who I’m sure is experienced, but I don’t know how many he does as they are rare, advised to do an embolization first and then surgery. The doctors at Mayo said they wouldn’t do the embolization and just to surgery. It’s hard getting so many opinions. Also, the 1st dr we saw suggested emobolization before he saw the agiogram, maybe he’ll have a different opinion now.
Christine said:
Diane, You are contemplating embolization and from what I understand they will need to do surgery as well? I will tell you that in my personal experience the embo was a waste of time and it caused more visible neurological changes than anything else that was done. My daughter was temporarily paralyzed on half of her face and her personality changed after the embo. She ended up having gamma anyhow so I feel it was a waste. The IR dr (who we saw first) was all for it but later doctors (neurologist and neurosurgeon) told us that they would have advised against it. It’s trauma to the brain. If the AVM needs another type of treatment as well then why traumatize the brain unnecessarily? Rachel, Please make sure the surgeon is experienced with AVMs. Surprisingly, many neurosurgeons have not seen it or have only operated on a few.
Rachel, we got the same split. The original outside consults both said embolization followed by craniotomy. We traveled to St. Louis to talk to the surgeon there, and the vascular surgeon who teamed with the pediatric surgeon, after reviewing it himself, he didn’t think embolization was necessary. We ultimately decided to have our neurosurgeon here in Knoxville do the surgery, so we let him decide whether he wanted the embolization first, as it can make the surgery easier when the blood flow is stopped, and he did.
Rachel, we got the same split. The original outside consults both said embolization followed by craniotomy. We traveled to St. Louis to talk to the surgeon there, and the vascular surgeon who teamed with the pediatric surgeon, after reviewing it himself, he didn’t think embolization was necessary. We ultimately decided to have our neurosurgeon here in Knoxville do the surgery, so we let him decide whether he wanted the embolization first, as it can make the surgery easier when the blood flow is stopped, and he did.
I can see where that would be useful…in our case however the embo was only partially successful (10%) and didn’t stop the blood flow entirely. I probably shouldn’t weigh in on these discussions because I am very biased, having been extraordinarily traumatized by the side effects. My daughter smiled and only one side of her mouth lifted. I know it was temporary but it was the first thing I saw when she came out of anesthesia after the embo. She also went from this sweet, shy, quiet and modest child to ripping her clothes off in front of the dr, yelling at me and screaming constantly. While some of it has gotten better she is still loud and aggressive, not the same child I raised for 5 years.
Susan Troop (Lindsey’s Mom) said:
Rachel, we got the same split. The original outside consults both said embolization followed by craniotomy. We traveled to St. Louis to talk to the surgeon there, and the vascular surgeon who teamed with the pediatric surgeon, after reviewing it himself, he didn’t think embolization was necessary. We ultimately decided to have our neurosurgeon here in Knoxville do the surgery, so we let him decide whether he wanted the embolization first, as it can make the surgery easier when the blood flow is stopped, and he did.
No, we didn’t have any problems from the embo at all. The IR was able to stop blood flow to her AVM 100%. Our surgeon also wanted it done because it makes the AVM vessels feel different when they are full of ONYX, and he had some concern about harming another artery that ran very close to the AVM, and he felt that it would help him differentiate as well. We knew it was not without risk, but the risk in her case was not very high. We decided that we wanted the surgeon to have the last say in what would make him more effective, knowing he was also weighing the risks. I’m not advocating anything, but just letting you know how it played out for us.
Rachel Dufault said:
Did you have any problems related to the embo?
Susan Troop (Lindsey’s Mom) said:
Rachel, we got the same split. The original outside consults both said embolization followed by craniotomy. We traveled to St. Louis to talk to the surgeon there, and the vascular surgeon who teamed with the pediatric surgeon, after reviewing it himself, he didn’t think embolization was necessary. We ultimately decided to have our neurosurgeon here in Knoxville do the surgery, so we let him decide whether he wanted the embolization first, as it can make the surgery easier when the blood flow is stopped, and he did.
Of course you should weigh in! We need to be able to see all sides of the treatment options in order to make the best decision! They sure are agonizing ones to make, aren’t they?!
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.
Hi Rachel, We just got home from seeing the Interventional Radiologist at Columbia Presbyterian Weill Cornell in NYC and our son has a residual AVM 3yrs post craniotomy for obliteration of a left frontal AVM. The plan for my son is to do an embolization. His AVM is very small 1-2mm but none the less needs to be treated. We saw Dr. Pierre Gobine and he said that he did not want to do gamma on my son because of his age 11 as of 11/18/2010. He said the risk of tumors over his life span would be too risky. His AVM is also in an area that could be surgically treated without being in an eloquent area. But he feels that he may be able to obliterate the AVM with only embolization. We are very pleased with the conservative approach of treatment at Columbia weill Cornell. We originally met with the Neurosurgeon at Columbia Presby and he said he could operate if he had to but he was not convinced it was an AVM, he presented all of my son’s films to his team and then they came back with the diagnosis. It is so impt to be in a Hospital where they are making team decisions.
We went to Jefferson Neuro science as our 2nd opinion from CHOP and they were ready to do gamma right away, then we mentioned the risks of bleeding during the waiting period and he switched his tune and said we can do surgery if you are more comfortable. We are so happy that the approach is going to be just an embolization with hopefully a complete obliteration. My personal opinion as a Mom and a nurse is that yes surgery will take a little longer to recover from but a cure would be had. I also would make sure that your son is in the best hospital with the newest tecniques availabe. One being an intraoperative angio to make sure the entire AVM was resected pror to leaving the operating room. Please know others are keeping your son and family in our thoughts and prayers during this difficult time. I am sharing my story out of love and concern for your son. Our son has been through so much and I have learned alot through the ordeal. I also am making decisions just like you and know how difficult it is. God bless.
Diane, Thank you so much for the information. I will pray that they can get it all with embo and that there are no compications. That would be so wonderful! It sounds like you have found a good medical team to work with. Have a great Thanksgiving and love up your boy!
Rachel
Diane Faherty said:
Hi Rachel, We just got home from seeing the Interventional Radiologist at Columbia Presbyterian Weill Cornell in NYC and our son has a residual AVM 3yrs post craniotomy for obliteration of a left frontal AVM. The plan for my son is to do an embolization. His AVM is very small 1-2mm but none the less needs to be treated. We saw Dr. Pierre Gobine and he said that he did not want to do gamma on my son because of his age 11 as of 11/18/2010. He said the risk of tumors over his life span would be too risky. His AVM is also in an area that could be surgically treated without being in an eloquent area. But he feels that he may be able to obliterate the AVM with only embolization. We are very pleased with the conservative approach of treatment at Columbia weill Cornell. We originally met with the Neurosurgeon at Columbia Presby and he said he could operate if he had to but he was not convinced it was an AVM, he presented all of my son’s films to his team and then they came back with the diagnosis. It is so impt to be in a Hospital where they are making team decisions. We went to Jefferson Neuro science as our 2nd opinion from CHOP and they were ready to do gamma right away, then we mentioned the risks of bleeding during the waiting period and he switched his tune and said we can do surgery if you are more comfortable. We are so happy that the approach is going to be just an embolization with hopefully a complete obliteration. My personal opinion as a Mom and a nurse is that yes surgery will take a little longer to recover from but a cure would be had. I also would make sure that your son is in the best hospital with the newest tecniques availabe. One being an intraoperative angio to make sure the entire AVM was resected pror to leaving the operating room. Please know others are keeping your son and family in our thoughts and prayers during this difficult time. I am sharing my story out of love and concern for your son. Our son has been through so much and I have learned alot through the ordeal. I also am making decisions just like you and know how difficult it is. God bless.
Hi Rachel,
I’ve just been catching up on the conversation. This is a good thread. First let me say I’m so sorry to read about your son. Reading about your struggle to make the right decision brings back such strong memories. I’m not sure of what to say about the exercised induced symptoms. What I can say is that my daughter always had headaches but once she hit puberty, at specific times of the month, the symptoms were way more accute. By this I mean we could literally see the blood pulsing through her face/nose area. This isn’t the same thing as exercise but I do believe the blood pressure highlighted the problem. The “episode” you describe sounds exactly like an incident which my Jaime experienced. For Jaime this happened at school after her surgery while weaning her off the anti seizure medication. All involved called it a seizure.
As for treatment options, we were told that the smaller AVMs are more risky for bleeding. We were told to think of it like a tree in a storm. If the more mature tree breaks it’s a big problem but, in general, they hold up better than the little saplings. Both can snap but the bigger stronger tree/vein is stronger and less likely to break. It’s a personal decision but we were glad we went with the surgery, none of us could bear the thought of living with this situation for 3 years hoping it didn’t bleed. Then there was the risk of radiation side effects for the rest of her life. It was too much for us. Brain surgery is scary…when you first hear the word you go into shock. How can this scary word be a part of our lives? It’s different for everyone but we were glad we went this route when we found that in addition to the AVM, Jaime had 3 aneurysms lurking in right next to the AVM. I’m assuming if you’ve had the angiogram that this isn’t the case for you. Not sure. As for recovery time, you’d be amazed ! We were at a Paul McCartney concert with my daughter 1 week to the day after crainiotomy. She was running 2 weeks after surgery (not a lot but…it was a start). Her surgery was mid July and she ran cross country that September. It’s amazing how quickly kids heal.
I’ll be praying for you, your son, your husband and family while you weigh your options. Whatever you decide please know that you have our support and that there is a light at the end of this dark tunnel called AVM.
As I wrote in my blog, having an avm to me only meant I had to quit playing football. Disappointing-yes, End of the world-no. When I was diagnosed radiosurgery was not available and my avm is too large for crainiotomy, however given the option, I would choose crainiotomy…by a VERY EXPERIENCED neurosurgeon.(One that specializes in crainotomies only, not both) As Ron, KS mentioned, I believe it is important to have a TEAM. I remember my pediatric neurosurgeon coming into my hospital room saying " Greg, we aren’t going to have to shave your head…" I looked at my parents, thinking ‘What the hell is he talking about?’…Shocked that they were even considering it?! Sorry about the tangent…
As I wrote in my blog, having an avm to me only meant I had to quit playing football. Disappointing-yes, End of the world-no. When I was diagnosed radiosurgery was not available and my avm is too large for crainiotomy, however given the option, I would choose crainiotomy…by a VERY EXPERIENCED neurosurgeon.(One that specializes in crainotomies only, not both) As Ron, KS mentioned, I believe it is important to have a TEAM. I remember my pediatric neurosurgeon coming into my hospital room saying " Greg, we aren’t going to have to shave your head…" I looked at my parents, thinking ‘What the hell is he talking about?’…Shocked that they were even considering it?! Sorry about the tangent…