I need guidance for multiple head and neck AVMs

[lskellyrn]

My daughter, 12 years old, has just been diagnosed with multiple AVMs on her head and neck. (She had surgery for one in her hand in August- we thought it was a regular cyst and that is when we were introduced to AVMs). Thankfully, the MRI shows that there are no malformations in her brain. We are told that they are superficial, though they can't be seen when looking at her.

We live in Atlanta, GA and we need to know who is the best to continue with diagnostics and treatment for her.

I have been on the Boston Children's website for vascular anomalies and they look like they would be very good, since they have a team approach and seem to have everything in one place.

Has anyone used them for consulting or treatment?

Thanks so much!
Lisa

[Bonniesch]

Hi,

It sounds like you have caught this early which is VERY GOOD!
My son was diagnosed 4 years ago and his was very advanced. The good news is that he is doing well now. It has been a tough road.
We interviewed & met with several teams. Boston, New York, Texas, Arkansas.
After having multiple angiogram proceedures in DC to get the AVM under control (we opted not to go for the radical surgery at first) my son developed an infection deep in his cheek due to all the artifact used to stop the flow of bloodthrough the AVM. We battled with th infection for a yr. and 1/2. We told that it was time for surgery to remove it all.
through the years we have connected with a few other families with similar problems. One Family saw Dr. Suen in Arkansas and had great success. After to speaking with the other Docs we too chose to see Dr. Suen.
He & his team are fabulous! The care at Arkansa Children's Hospital & at UAMS has been wonderful.
We live in Maryland. Traveling the distance does not make this process any easier, but this was the best choice we made in 4 years. I wish we had met him sooner.
Please feel free to contact me. I have learned alot of information & have many resources that might be of help to you & your family.

Warm Regards,
Bonnie

[Bonniesch]

Hi,

It sounds like you have caught this early which is VERY GOOD!
My son was diagnosed 4 years ago and his was very advanced. The good news is that he is doing well now. It has been a tough road.
We interviewed & met with several teams. Boston, New York, Texas, Arkansas.
After having multiple angiogram proceedures in DC to get the AVM under control (we opted not to go for the radical surgery at first) my son developed an infection deep in his cheek due to all the artifact used to stop the flow of blood through the AVM. We battled with th infection for a yr. and 1/2. We told that it was time for surgery to remove it all.
Through the years we have connected with a few other families with similar problems. One Family saw Dr. Suen in Arkansas and had great success. After to speaking with the other Docs we too chose to see Dr. Suen.
He & his team are fabulous! He removed all infection, necratic tissue, metal coils and gluewith great success. The care at Arkansa Children's Hospital & at UAMS has been wonderful.
We live in Maryland. Traveling the distance does not make this process any easier, but this was the best choice we made in 4 years. I wish we had met him sooner.
Please feel free to contact me. I have learned alot of information & have many resources that might be of help to you & your family.

Warm Regards,
Bonnie

[LThompson]

Hi Lise,
We live in Atlanta also, I saw your post. For some reason I haven't been able to login for a couple years until they got there new website now and I made a new login. It wouldn't allow me to before & after many repeated attempts to contact them I stopped.
My daughter has a lip avm, she is now 18yrs. We saw speciatlists at Emory here then I found this sight and 2 other things sent me to Dr. Waner in NY. He came from Childrens Hosp, Arkansas and has started a vascular institute in NY. He did my daughters surgery in 2005, it's much improved, not perfect she has swelling but hasn't really worsened. She did not have emolization or laser. You can email me at azblt@aol.com I'd love to corespond with you and see how your son is doing. I also would like to connect with Bonnie who responed to you to see how their doing. I have 2 other ladies I keep in touch with, one similar to my daughter lip avm, another with facial avm. Linda

[frugiedh]

You could ask this question on www.avmsurvivors.org. There are many people on this site with facial and extremity AVM's. Just a thought.

[missy]

Thank you so much for the link!

We'd love to have your family's story... from this and your other post, I gather you've come a long way through a difficult journey.

Missy