AVM Survivors Network

Update on my son

We found out this week that my sons AVM is 2.6-3.8 cm and in some other places it is 4cm. It is on the left side of the brain, ( left poreto occipital) i don't no if that is spelled right. I am going by what the dr. wrote. He said on a scale of 1-5 he is a 4. We saw all the ct scans and mri's. It is comming of the main artery. He also said it was 3cm deep. He says he wants to talk to other doctors and possibly other hospitals. I feel very scared. I know he is.( my son ) He asked me if i was going to write about him in this forum, i told him i would. We just don't no where else to go and who to talk to about everything that will happen to him. if this sounds familiar to anyone, please let us know how everything went with you. Thank you so much

Hi Jackie,

Except for the specific details about your son's AVM, your story is exactly like all of us who first hear the term "AVM". Never heard of it, and now it's a potential life altering event...............

My best suggestion is get your son's info (scans/mris) to one or more places that treats hundreds of AVMs LIKE HIS every year. You want a team that can handle embolizations, radiation, and surgery to be working together to suggest the best course of treatment for him. Just like you wouldn't take your car to a mechanic that works on one car per year, you want a team that works on AVMs all the time to guide your course of action.

Best wishes,
Ron, KS

USC has a great team

I am so sorry you are going thru this.... I will be praying for you.

As for personal experience... I was told "inoperable" with 95% chance of paralysis and a lot of other deficits by several local surgeon. However, I traveled 2000 miles last February to have surgery at The Barrow Institute at StJoseph hospital in Phoenix Arizona, by Dr.Robert spetzler... and I do need rehabilitation but I have no paralysis, and so many other things I was told I would have. Dr.Spetzler is amongs the best in the world. He is actually the inventor of that scale you mentionned (1-5) You can send him your son MRI by mail and he will call you and talk with you about option. He saved my life.

I’m sorry to hear about your son. My AVM was in the same place as his but on the right side. I did not know I had before my bleed. It was successfully respected a few weeks after the bleed. My surgeon told me he believed he could have removed it without much damage had we known about it. The deficits I have are the result of the bleed not the surgery. I encourage you to seek other opinions for your son. The more information you have the better you’ll be able to help decide what treatment is best for your son. Best wishes to your son. Good luck.

My son was seen at Cincinnati Children’s by Dr. Blaise Jones. Excellent doctor for AVMS. my son ahd 3 emolizations that were successful.