New to all this...AVM found in son 2/4/10 and confirmed 2/5/10

I am very glad to have found this site! My 12 year old was just found to have an AVM as mentioned in the title.

By the grace of God, due to a completely unrelated injury, I found out that he has this AVM and yesterday at the first appointment with our surgeon I was told that it appears to be 2.8cm, 2.5" deep in from the right ear, by the posterior thalamus. At this time, I've been told that there have been no bleeds and he has not had any symptoms of any sort that would have clued me into him having it.

The surgeon yesterday said that there will be an angiogram, an embolization, and then Gamma Knife surgery unless it is a main artery feeding the AVM, in which case it would be necessary to have the resection. He also said that my son will not be able to participate in any activities that might raise the blood pressure or cause head injury that could create problems while the AVM is being "killed off" and it could be up to two years that he would be restricted. He's very disappointed because he was so looking forward to playing real football next year for his middle school but I have told him that while he has every right to feel that way, he also needs to consider that two years is nothing and he'll still have plenty of SAFE opportunities to participate in things if he has his treatment now and follows doctor's orders.

I don't know much more than what I've been able to find on the Net and would surely appreciate input and insight from those who are certainly more experienced than I.

Hi! Welcome to the site! There are lots of people who will be able to help give you support! My daughter (10) had a hemorrhage in July of last year. It was a small one, and she didn’t have any deficits from it, but that is how they discovered her AVM. She has been on the same activity restrictions since then. It took us about 5 months to navigate the whole situation, with angiogram, second and third opinions etc. She just had embolization and craniotomy January 20-21st, and is pretty much back to normal already. I would count on getting more than one opinion. Our surgeon encouraged us to do the same, and even sent out for them for us. We ultimately stayed with him, but no two AVMs are alike, and different surgeons will have different approaches. From all of my research, it seemed to me that with children they really like to take them out if at all possible, so I wouldn’t rule that out unless it looks like that would cause a lot of deficits because of location. Let me know if you have any questions. I’ll answer them if I can. It’s great that they found it before a bleed!

My daughter was 9 and a talented soccer player, when her previously undiagnoised AVM bled. Her AVM was removed a month later. It’s been almost 2 years and we are still waiting for the all clear. A couple years is a long time for a kid. Dani isn’t allowed to participate in PE or any activity that could result in a blow to the head. She’s taking dance and is planning to start cross country next fall. She also suffered a vision loss that reduces her ability to compete in many sports, but track and cross country are good options. Swimming might be a good choice for your son. It might help to approach these sports as training opportunities. It’s hard for kids to be told they can’t do what their friends are doing even if they understand all the reasons behind it. I’d be cautions of timelines and outcomes because sometimes things take longer than expected. You son should know that each AVM case is different so doctors can’t really tell him when or if he’ll be back on the football field.
Good luck to you both!

Praise God they found it so early! I don’t know you and just found this sight myself but will pray for you. I cannot imagine as a mother what you are going through. I am 35 and just had my AVM removed after having my hemmorage 3 days before being induced with our 3rd son. I know a great neuro surgeon probably one of the best in the states…Barry Chehrazi. He is in Roseville California and took care of me. My dear friend also had an avm and found it in highschool. The earlier the better. I need to have my son seen as he has had some seizures as well. Anyways just wanted to say that, I hope I was some source of encouragement for you. Hang in there momma

Rebecca said:

My daughter was 9 and a talented soccer player, when her previously undiagnoised AVM bled. Her AVM was removed a month later. It’s been almost 2 years and we are still waiting for the all clear. A couple years is a long time for a kid. Dani isn’t allowed to participate in PE or any activity that could result in a blow to the head. She’s taking dance and is planning to start cross country next fall. She also suffered a vision loss that reduces her ability to compete in many sports, but track and cross country are good options. Swimming might be a good choice for your son. It might help to approach these sports as training opportunities. It’s hard for kids to be told they can’t do what their friends are doing even if they understand all the reasons behind it. I’d be cautions of timelines and outcomes because sometimes things take longer than expected. You son should know that each AVM case is different so doctors can’t really tell him when or if he’ll be back on the football field.
Good luck to you both!

Lindsey’s neurosurgeon said no swimming. I think it has to do with the pressure of going underwater. That may have been because of her bleed, but it is something to consider.

WoW this is the first post I have seen on here that is close to same type of AVM that I have. My AVM is a on the main artery in the right side of my head witch made it inop. Keep us posted!

I had Gamma knife in 2005 after talking to a lot of brain surgens. I was 28 at the time. I had talked to about 14 dif brain surgens and did not give up on finding out the best way to deal with it and the best doctors to do it. multi-disciplinary / multi-faceted team is the key word to hear when looking for a brain surgen team other wise run! I had some crak pot say he could cut mine out and he could do it the next day (bad doctor!). The other 5 doctors I had meet said I would not make it off the table if they tryed to remove it. EVERY AVM is dif. a multi-faceted team under stands this but you do want a gunho diehard brain surgen that is willing to take the risk to get the hole AVM.

I’m doing well after Gamma knife over all. He is young and should do well! Gamma knife has some up sides like “I had brain sugery” and every one looks at my baild head and says "no way!"
Put vitemin e where the small spots where the halo get mounted and for the most part no scaring will happen.

Good luck and we will pray!

I don’t think you can have much to contribute at first other then “WHat the heck is an AVM any ways!” or “I’m lost I fig AVM was some kind of brain cancer!” for like the first 2 to 8 weeks. AVMs play out dif. for every singal one of us and it takes time to under stand it / get a grip on it. I wish this page was up and running 5 years a go. I was flated by my first doc. that said “Do you have a insurance or a brain surgen because you have an AVM.” then walked out of the room.

So glad you found this AVM before anything catastrophic happened. There’s a Parents group here too if you want to connect with parents. http://www.avmsurvivors.org/groups

Welcome to the site. I’m sorry to hear about your son. I also have a 12 year old …a daughter, but I am the one with the AVM diagnosis. I was diagnosed in Dec 08. Mine is on my left parietal lobe. I had two embolizations and stereotactic radiation and now it’s wait and see for the next 3 years. I feel great! I hope your son is handling the news as well as possible. I’m sure it’s a shock to him as of course you as his Mother and protector. Just know there are many people who care and who are praying for you all. Take care and keep us posted.

Rachel

Holly:
Welcome. My daughter, who was at the time was 14, was diagnosed with an AVM after having a seizure in April of last year. No bleed. Her’s was located behind her right eye. After having an angiogram, 5 embolizations and then the cranial surgery on Nov. 30th, she is doing great! I feel for what your are going thru right now. It was a long journey, but everything is now good. My daughter was able to keep playing soccer and basketball up to the day of surgery. Although, she was restricted from lifted any weights and we were very careful about keeping contact from her head area. Hang in there and don’t be afraid to ask questions whatever they may be. I did a lot of research on the internet and also had a second opinion done from Cleveland Clinic. Keep the faith and if you should have any questions, please feel free to ask. I have to say, this support group what the best thing for me. Lots of prayers to you and your son. Rhonda

It was the end of summer when Lindsey was put on restrictions of activity. That was really hard at first, but now it is just the way it is, and it doesn’t bother her. In a few weeks, our surgeon will release her to do the stuff that will raise her blood pressure, but no contact sports (which still seems like just about everything when he starts rattling off what is considered a contact sport!) until May. By the time that this is over, she would have been on restrictions for 9 months. On the flip side, she doesn’t mind sitting out from P.E. in school. :slight_smile: She won’t have been allowed to participate for pretty much this whole year, which created some issues of its own, dealing with the P.E. teacher.

Holly Tautz said:

Oh my goodness thank you all SO much! I needed this today and here you all were!


I have to be honest and say I would rather it was me going through this but that’s not the way it happened.



We got told on Monday that he is not to weightlift, play football, race (not time here yet for outdoor but no indoor stuff either), or do anything that would risk him hitting his head or that could put pressure on his arteries. He was rather upset but now seems to be handling it well.

I play race simulators Rfactory, GTR2 and Race 07 to have fun. besides it’s cheeper then paying for track time and tires. I picked up a used MOMO steering wheel on creaglist $40 and my games at half.com and half priced books $6-14. Amazion.com has some good prices on used games also. It helps keep me from being ster crazy.