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My 2 year and 9month daughter AVM found


#1

First of all, thanks a lot for putting this forum together and sharing valuable information.

My precious 2 year and 9 months old daughter had a seizure last Friday and was taken to ER. After testings and CT/MRI scans, viral meninigitis was the reason she had a seizure, but the MRI revealed there was an AVM on the right hemisphere of her brain. According to Dr. Bradley Bohnstedt in University of Oklahoma Medical Center, her AVM is accessible and surgically treatable. After the enterovirus is under the control, he recommended to have an angiogram soon within 3-4 weeks. He was a fantastic doctor, but I want the most experienced and best pediatric neurosurgeon to take care of my daughter considering her age.
We live in Oklahoma City, OK right now and I am more than willing to travel to take care of her.

Any comments/advice/recommendation will be appreciated. And most importantly, pray for my daughter.

Thanks


#2

It has to be so difficult to have a child with an AVM, being a parent myself I can’t imagine. There are quite a number of parents on the site and the challenges in dealing with these, having to be so strong for your kids, is very hard. We’re all here to support you and provide our experiences if they can help. Personally I had gamma knife and am from Canada so quite different then what you are facing. There has been many posts in respect to amazing Drs in the US so hopefully folks will chime in with some options. Take Care, John.


#3

@cjw7475 I would check out Dr Lawton at Barrow in Arizona
I am so sorry about your daughter
Angela


#4

Hey, if I was in OK and needed to treat an AVM surgically I would definitely talk with Hunt Batjer at UT Southwestern Med Center (https://utswmed.org/doctors/henry-batjer/). Great guy, fantastic surgeon with scads of experience. Not too far. Sounds like your kiddo’s AVM is pretty easily treatable - Batjer would have that sucker out ASAP. Reality is, getting that virus & accordingly finding the AVM ultimately is going to save your kid’s bacon. Will pray for you all.


#5

My 7 year old daughter had AVM surgery with Michael Lawton in November 2017, six weeks after an AVM rupture. We travelled from CA for the surgery. He is a genius and wouldn’t think twice about recommending him.