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AVM Survivors Network

Recommend where to treat AVM

Dear all,
My daughter of 13 years old got 2.5 cm AVM - occital lope, unruptured, discovered on March 2 through a health check. We got the first opinion from sigaporian doctors for Gamma knife treatment after seeing our MRI. The second opinion from Hungarian intervention neurologist after DSA is also Gamma Knife. Could you pls advise me where should we take the treatment? We live in Vietnam - Asia but we re at Europe at the moment. Thank you very much.

We used Dr. Ed Smith at Boston Childrens Hospital (USA) and I believe he is the best in the world when it comes to treating children. We had him remove a 3 cm AVM from our 9 yr old’s left frontal/temporal lobe.

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Thank you very much, CGMinn. Would you mind informing me how much it costs?

Dr. Smith was amazing to us. He called me from Hawaii to talk me down when I was freaking out after the small local hospital discharged my son to home from the ICU without a plan in place to manage his newly diagnosed left posterior frontal AVM. He thinks it’s too risk for a craniotomy removal, so has referred us to Dr. Chapman at Mass General’s Proton Beam radiation program. We believe Proton Beam is safer than gamma knife and it is the avenue we are pursuing now for treatment.

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My 4-year old son was just diagnosed AVM and we’re also contacting Dr. Ed Smith for treatment. May I ask did you fly your son to Boston to be treated? How long was the flight? (We will have to make a 15-hour flight and I’m worried about the safety. ) Also may I ask how much it cost?

Good afternoon. I am so sorry to hear about your son. We did fly to see Dr. Smith. Two times actually. My son (9 yrs old at the time) was nervous about the situation, so we chose to fly to Boston to meet Dr. Smith six weeks in advance. We then returned 2-3 days prior to surgery. We live in MN, so a flight to Boston was about three hours each way. I suppose I did not wonder about air pressure while flying there, but I now realize that if it was dangerous, someone would have told us to not to do it. I do not recall the exact cost of the surgery. Sorry.

I am just returning to this site after some time away. I apologize that I did not respond to your post initially. Yes, Dr Smith is amazing. I hope your son is doing well.

Thank you for writing back. It must have been hard for you and your family
at that time. May I ask what made you choose Dr. Smith and Boston
Children’s? I think Mayo Clinic is in MN, is it? I’m trying to search about
Dr. Smith but there’re both positive and negative reviews. I’m struggling
as whether to take my son to him, or to Mayo. Many thanks.

Hi,
Did your son take a treatment with Dr. Smith? Sorry as I was not able to log in in the past few months.
Hope

Hi, I am also receiving treatment (I choose embolisation after all) in Hungary. I was diagnosed with an AVM in my left frontal lobe. Can I ask you with which neurosurgeon have you consulted here? who did the DSA?

Hi Findjia,
How are you and your son? Did your son take a treatment? Where did you choose?
All the best to you,
Hope

Hi,

Yes he did. We went to Barrow and Dr. Lawton removed the AVM without any complications, thank God.

My son is doing great now.

How are things with you?

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Hey everyone, I’m Jerrod, some know me as Tex. A avm survivor, supporter, and I guess you can also call me a counselor. 20 year survivor. Had my clot present itself when I was nine in 2000. I’m now 29. And have had the pleasure of mentoring for years now. Flew to Dallas for my operation, have had no complications. Had my operation at Women’s and Children’s in Dallas. Graduated in 2009. Spent two summers as a missionary in West Texas. Have been aidless since pretty much 2005. Have had many say “you were a trooper”. Have just set goals that looked by others unobtainable. Went from bedridden in May of 2000, too walking across my high school graduation stage without any aids. Have had the pleasure to impact many with my story from the earliest Haily in 2009 to here last time I logged in, that many have said I’ve impacted their outlooks. I hope I encounter many more like Haily but if she’s the only one, I’ve made a difference in their lives. I can say I went from seeking out a support group in 2005 to being a contributor in 2009 and still insert my opinion and knowledge from time to time. Find a complete medical team that has the knowledge and comment. That Dr.Scott and his skilled team. Tex

Barrow and Dr Lawton are the best!

If I were to give you a recommendation, would recommend you to go to Perth, western Australia to get a cyber-knife treatment done instead of a gamma- knife since the cyberknife system is the newest type of stereotactic radio-surgery use to treat AVMs. The radio oncologist who conducted my treatment was doctor Chris Harper. feel free to look him up at the Doctor registry at Sir Charles Gairdner hospital.