Looking for insight

Hi Everyone, my 15 year old cousin in India was diagnosed with Right diffuse Frontal AVM couple months ago. The size is 4.5cm x 4.4cm x 3.9cm. We found out about it when she had a seizure and we took her to get a check up. My family took her to one of the best hospitals in India and the Neurosurgeon said he did not feel comfortable performing surgery due to the difficulties which will be presented.This brought my family to its knees as this is a little girl who hasnt even experience life yet can have it taken away from her. Someone please offer me some type of advise. Im in the USA and i will look for doctors here. Please offer opinions, top doctors and experiences you may have encountered..If you have any knowledge about how i can get her to come to the USA for treatement, buy her insurance..it will be greatly appreciated. This experience has truly changed my view on life. I pray for everyone here and their family, friends who may have this. It has shattered my family but I wont give up ever.

The Mayo Clinic in Rochester, Minnesota is one of the best hospitals for neurosurgery, as is John Hopkins in Baltimore, Maryland. My surgery was performed at Mayo and went perfectly. You might also want investigate hospitals near you which can perform radio surgery, as that is another way to remove an AVM.

I don’t know anything about medical insurance for foreigners, but you might try just calling the hospital and asking how other non-US citizens have paid for their procedures. There were many non-US citizens at the hospital when I went in.

Tell your family to continue their hospital search! That may have been the best hospital in India, but perhaps there are more specialized clinics around.

I hope your search is fruitful! And I am sorry for your cousin. It is good of you to be investigating this for her. I hope you are able to get her to a capable surgeon.

Im sorry to hear about your cousin and I hope ppl from the US can help you out with referrals as im not from the US...God bless!

So sorry abt your cousin. I know a lot about how you feel as my daughter was only 17 when her’s was found. We were very scared, too. In my research I would agree that the Mayo has a good program as they turned up in several searches. Don’t know where in US you are, but check YouTube (strange as it sounds) and there are some good videos about treatment there and a video about a hosp in New York with a good program. I would suggest Dr Zaidat in Milwaukee but we just found out he has taken a position elsewhere. But if you can find him… He was a top AVM doc and researcher in the Midwest. Gamma, cranitomy, Onyx glue, coiling and other options are around. Doctors can decide what is best for your cousin. Best wishes for recovery!

Hi Harvey

Where are in US are you located? This will help me and other in the group to offer opinions/experiences.

Thanks.

He’s in Roselle Park, NJ, just outside the Big Apple (you can see it on his profile - just click on his pic or butterfly to get there). I know he’s looking for specific docs, but explaining the process you went through to find one is even better. Shivangi is a great example… :slight_smile:

I live in Roselle Park NJ. I was looking for a way to have my cousin come to the US for treatment and read that I would have to show how I will fund the treatment. I was thinking that it would be possible to have her come here and purchase insurance but it said insurance was an invalid explanation for funding. I am in a dilemma as I def. do not have the type of money it will take to treat her. Feeling very stressed. Please offer some advice if you have any knowledge about this situation.

Thank you in advance to anyone who takes the time out to respond. Your great people!

Thank you everyone! I spoke with Doctor Solomon. Currently in the process of trying to get my cousin insurance. Will keep you guys posted. He stated that the surgery has a 95 % success rate. I know that is high but its still scary to believe that there is a 5% chance i can lose my cousin so will continue to search until that 5% becomes smaller.

I don't think you will get a better estimate than 95%. The doctors have to tell you that there is some risk.

Solomon is a top doctor. You can look up the top doctors in this tool http://nymag.com/bestdoctors/find/

Just look at the Neurosurgeons and you can click on each to find out who specializes in AVM's

You might try contacting The Epilepsy Foundation (http://www.epilepsy.com) and/or The Aneurysm and Avm Foundation (TAAF) http://www.taafonline.org) TAAF has a Facebook page (https://m.facebook.com/profile.php?id=34505484952&tsid=0.48264501383528113&source=typeahead) I hope that you will be able to find a way to help your cousin.