Well After talking to my children’s pedi she highly suggested getting MRI/MRA’s done on my boys since the AVM is congenital - we can trace it back to my hubbies great great grandfather and it skips every other generation and his kids are the generation to have it. His sister kid (our niece) just died from it and no one knew she had it.
I need a Neuro that is familiar with AVM’s that will be able to help us out.
Any help is appreciated.
Hi Jewel. It looks like you are in the Detroit MI area. I did a search for you…http://www.avmsurvivors.org/main/search/search?q=Detroit%2C+MI
It looks like a lot of members there go to the Henry Ford Hospital. Maybe you could call their neurology department. Good Luck!
Jewel, Congenital simply means we are born with it, NOT genetic. I think I have read of one type of avm(HHT) that can be genetic. Hope this helps, good luck -GK
I’m just joined this site. So, I may be a bit late with my reply.
If you’re still looking, you should contact Michigan Head and Spine.
Dr. Fernando Diaz specializes in AVMs.
Thank you I will add him to my short list of 2 total!
You can check out Dr Awad Shah at the Insight neurosciences institute in Grand Blanc. He performed craniotomy and repaired my AVM after my bleed. I am alive and doing well now 6 months after.
Hi Jewel - I'm sorry to hear that - Dr. Donald Seyfried at Henry Ford Hospital did mine. He works both downtown Detroit and West Bloomfield (Oakland County)...just specify which location you prefer when you schedule.
I didn't know they were hereditary... does that mean I should have my kids checked out??