My son had a ruptured AVM on August 1st 2013. We are now in the process of rehab then we have to get a second opinion for the next upcoming surgery. My problem is the only thing that the neuro team is recommending is the cath and then open surgery to remove the remaining avm. The team here is fantastic they saved my sons life but the interventional radiologist is not specialized in pediatric patients. They are saying that they have done some kids but its not common. I don’t want to just give my child to them not knowing if they can do what needs to be done for him. I need a second and possibly 3rd opinion, I live in Michigan can someone please point me in the right direction this is a life altering decision I have to make and I can’t take any chances on him
Well if you want a second opinion, my neurology department at Central Dupage Hospital in Winfield, IL has a really good (nationally recognized) Neurology Department.
Try using this link…http://www.avmsurvivors.org/profiles/members/advancedSearch
Type in Lansing, MI or Detroit, MI. See which doctors/ hospitals those members liked. I will be praying for your son!
Here is a list of pediatric neurologists and neurosurgery hospitals that may be able to point you in the right direction:
http://www.avmsurvivors.org/group/parentsofavm/forum/topics/list-of...
I live in Cincinnati Ohio, and we have oen of the best Children hospital in the country. A lot of people all over the country comes.
Please do not let anybody touch your child if you do not have 100% faith in them. GO online and research to find the best Children's hospital / neurosurgeons that are specialised in what your child has. That is SO important!!!
I dont know how far you can travel... I assume you have no limits!! But personally, I was treated in Arizona, at the Barrow Institute, because everybody else said it was inoperable and nothing could be done. I know that they have an incredible reputation with their Children's Hospital as well.
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USC Medical Center
Hi Michelle, my names Emily. I had my AVM rupture when I was 16, i'm now 19 but my family and I were put in the same situation you are in now. I openly had my AVM removed after a 12 hour surgery. I suffer no side effects what so ever and had the best nuerosurgeon team the nation has to offer. I live on Long Island my Dr. was Dr. Mitler and Dr. Setton. I HIGHLY HIGHLY HGHLY reccomend them if you are looking for the best of the best. If you have any other questions feel free to ask, i'm open to anything! Prayers xoxo