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AVM Survivors Network

Seeking Info For 9 Year Old Son

Hello, everyone. My name is Chris and my wife and I have a 9 yr old son who has been diagnosed with an AVM in his left temporal lobe. We are talking to Childrens Minnesota and Boston Childrens Hospital. I am curious if anyone has any experience with Childrens Minnesota’s Neurology Dept? Thank you.

Hi CGMinn, I am not sure on that specific hospital but I here the best in the area is the Mayo clinic Rochester Minnesota, Being from the UK I have no idea if that is even remotely near you guys ?, But wanted to reply with any info I had as I too have a 9 year old son. Take care and hope you guys have the best treatment options and facilities available.

Martin

I’m sorry I can’t speak for the children’s hospitals that you’re asking about, however I’ve a son that required extensive health care with the St. Louis Children’s hospital specifically the neurology department (For life threatening seizures ) and the care he has received was second to none. At that time His doctor’ was rated in the top 100 children’s neurologist in the country.
Take it a day at a time, Keep researching and you’ll find the right facility to meet your needs.
Btw I’ve also heard nothing but great thing about mayo.
Best wishes
J

Sorry to hear about your son, my son is 11. I have an AVM in the left temporal and had gamma knife in November of this year in Winnipeg, Manitoba. The staff at the Health Science Centre Neurology Dept are fantastic. When I was doing research and looking at maybe a trip south of the border, I found the info on the Mayo in Rochester per Martin. Rated as the tops in the US in neuro in information I saw, worth a look for you for sure. Stay strong!

Thank you, Martin. We did look at Mayo, but in looking at the US News and World Report rankings, saw that Boston Childrens was rated higher. Again, I don’t know if there is a specific reason and usually don’t put much stock in rankings, but we did go out there and felt very comfortable.

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Thank you for your feedback. Every comment helps. Prayers to you and your son. Our family will remember you in our prayers tonight.

@JD12 Thank you! The decision between gamma knife/radiation and surgery as been our biggest question mark. Some drs have said that radiation is the best bet while others have said radiation is not recommended for 9 yr olds. Just so I am reading your reply correctly, are you saying you had the AVM or your 11 yr old son did? Thanks again - prayers for a speedy recovery.

It sounds like you guys have done your research and I only know from what I have read here on this site over the many years and most of the members are adults so Boston Childeren’s Hospital is more than likely better as it seems to focus on child health and this way your son will have other company and a nice setting also :slight_smile: , Take care and please do let us know how it goes.

Martin

Thank you, you and your family will be in our prayers.

Best wishes

Sorry for the confusion, it is me that has the AVM. Mine is fairly deep in the temporal, thus the decision to go with gamma and what was recommended by the surgeon. Sounds like you’re doing the research to get to the best decision, I can’t imagine how tough it is. I was able to decide for myself which I’m certain was much easier than the process you’re going through. I’ve learned there are few absolutes. Wishing the best to your son and you

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