Doctors

General
1

I am wanting to get a second opinion on whether or not to have surgery to remove my sons avm. We have had 2 embolization and one round of chemotherapy. The doctors now think removing the avm is the next step. I have some concerns about the side affects and risk of the surgery so I am looking to get a second opinion before we make a decision. We live in Tennessee and are currently being treated at Vanderbilt. Anyone who can give me some names of doctors in our area would be very much appreciated. Thanks and God bless!

2

Hi Stacey…
It sounds like your sons AVM may be pretty complex,I’m not a doctor but a second opinion is always good. I live in the NE so I can’t help with good Neuro doctors unless maybe you’d consider Baltimore. I know Johns Hopkins has AVM specialists and they will consult with phone and email. Might be worth a shot but I don’t know the whole situation, but I stayed at our university hospital where I live because I have kids and I didn’t want to be away. In your case it is your child, and if it were my son I would definitely be getting other opinions. I hope that helps, he’ll be in our prayers God bless :sunny:️

Lorna

3

Please get as many opinions as you feel comfortable, don’t just settle at 2. I myself had 3 before taking the path that I chose. Blessings to you and your son.

4

Stacey,
In the shortcuts banner near the top of the page, you will see "Doctors". If you click on it, you'll find a list of docs from all over. Unfortunately, it's not sorted so you have to scan the whole list for what you're looking for. I did notice this one, though:

Gresham Richter (Otolaryngology)

Arkansas Childen’s Hospital

800 Marshall St., Slot #653

Little Rock, AR 72202

501-■■■■■■■■

http://achri.archildrens.org/researchers/RichterG.html

Hope this helps!

Seenie from Moderator Support

5

I'll just add that you probably want to get copies of your sons medical records and a dvd/cd with all his radiiology images (MRI/Angio, etc). That way you could potentially send the records to any doctor and do a long distance consult over the phone or via the web.

6

I don't know the age of your son, but I born with that condition and I get the discovery late age. my recovery have been really bad. I lost memory and I suffer of memory retention. If your son have the time to do early, just do it!!! For his own good. God bless you always and I'm adding your son to my prayers!! Forget about Gamma Knife Surgery

7

Hi, The #1 hospital in the USA this year for Neurology and Neurosurgeons is Mayo in Minneapolis. This is their third time in a row to be #1. There are also excellent doctors at Duke University and University of North Carolina. Mine was Deanna Sasaki-Adams, from UNC. Excellent bedside manner and amazingly intelligent on the subject of AVMs. From Vanderbilt to UNC the trip by airline is about an hour- little over. UNC has close-by places to stay for family or patients- super cheap. Mayo has the same thing- within walking distance of their building. (My brother paid 36.00 a night for a very nice hotel on Mayo Campus). In your area though, I don’t know of anyone but of course I bet somebody knows a good one!

8

Many doctors will have out of area patients send them their images/scans and advise from there. I saw three area doctors, and my doctors sent scans to two out of area doctors. I also sent scans myself to an out of the area doc over the internet who advised/did a one time consult with me for free before eventually deciding to pursue treatment and then later settle on a course of action to take. .