Hi all,
My 3 year old grandaughter was just diagnosed with AVM in her left cheek, as I read the other members coments and blogs, I see that alot suffer with brain AVM, I haven't seen to many with facial. If anyone knows anything about a facial AVM and can give us any info, we would appreciate it. We just found out last week that this is what she has, so we are frantic to find Doctors who could help us and information on this. Thanks
avm
Hello Barbara,
Very sorry to hear about the diagnosis. It looks like you got it diagnosed early and are on the right track in seeking the best care ASAP. There are several members here with facial AVMs. I would recommend joining the group “extremity AVMs” (non-brain AVMs) which can be found on the right hand side of the main page. You’ll find the members there very friendly and willing to help you with both advice on treatments and doctors but also emotional support. From what I’ve learned there are a some very experienced extremity-AVM doctors in the US and Dr. Wayne Yakes is one of the best.
Take Care
I am glad you are getting an early diagnosis–that helps a lot. I have an AVM on my left ear and the scalp area all the way around my ear front and back. I am adult woman 53 and wasn’t diagnosed correctly for many years. I have had an embolization and surgery. My best advice is to contact several AVM doctors and get all their input and advice. I don’t know what part of the country you are in but my AVM doctor will give a free “consult” opinion if he is contacted by e-mail. It also helps if you can send him pictures or any test results. He is in Little Rock, Arkansa at the Univ. of Arkansas for Medical Sciences. His name is Dr. James Suen and his e-mail is ■■■■■■■■■■■■■■■■■■■. A Dr. Lisa Buckmiller does all the childrens surgeries for AVMs there but I don’t know her e-mail address but if you send info to Dr. Suen, he will look at it and forward it to her. They are VERY good about returning e-mail and answering questions. There is also Dr. Milton Waner in NYC who has treated a lot of children with facial AVMS–they will also give a free preliminary opinion about what would be the best treatment–sorry I don’t know his e-mail address but if you type in Vascular Birthmarks Foundation in NYC–it should come up. I’m glad you found this site and hope you write and let us all know how you are doing. Kim
Kimberly Buehrer said:
I am glad you are getting an early diagnosis–that helps a lot. I have an AVM on my left ear and the scalp area all the way around my ear front and back. I am adult woman 53 and wasn’t diagnosed correctly for many years. I have had an embolization and surgery. My best advice is to contact several AVM doctors and get all their input and advice. I don’t know what part of the country you are in but my AVM doctor will give a free “consult” opinion if he is contacted by e-mail. It also helps if you can send him pictures or any test results. He is in Little Rock, Arkansa at the Univ. of Arkansas for Medical Sciences. His name is Dr. James Suen and his e-mail is suenjamesy@uams.edu. A Dr. Lisa Buckmiller does all the childrens surgeries for AVMs there but I don’t know her e-mail address but if you send info to Dr. Suen, he will look at it and forward it to her. They are VERY good about returning e-mail and answering questions. There is also Dr. Milton Waner in NYC who has treated a lot of children with facial AVMS–they will also give a free preliminary opinion about what would be the best treatment–sorry I don’t know his e-mail address but if you type in Vascular Birthmarks Foundation in NYC–it should come up. I’m glad you found this site and hope you write and let us all know how you are doing. Kim
Thank you Greg and Kimberly, your support and the information with this is huge and I can’t thank you enough. My daughter lives in Massachusetts and Alivia was seen at Boston Childrens Hospital, knowing that there are other Doctors who deal with this condition and my possibly be able to do something for her is a God sent. Thanks again and I will definately keep you updated. If you would like to see Alivia, my daughter is also on here, Shannon Mckay, she has uploaded pics of our beautiful little girl.
I’m 32yrs old and after being misdiagnosed for my whole life I was finally diagnosed with a faical AVM 12/08. My AVM involves my right cheek and right upper lip. I am currently being treating by Dr. Suen at UAMS and I am pleased with my results. Be happy that she has been diagnosed early and it can be controlled sooner. Mine was uncontrolled for so long that it grew leading to some facial disfigurement. Be prepared for multiple treatments if embolization is the treatment of choice and hair loss due to the fluroscopy. There is no cure because AVM’s create their own stem cells but Dr. Suen is on the cutting edge of technology and says there is a cure on the horizon.
My son Ryan was born with an AVM of the head and neck/right cheek and palate. His grew and bled at a phenominal rate. We began our journey at Childrens Boston, but there was just no hope in sight. We traveled to many top facilities and drs around the U.S. praying we would find somebody who could help save our baby boy’s life. Dr Suen was that miracle. He is top notch and on the cutting edge of treatment and a cure. He just performed another surgery yesterday and Ryan is doing well. 99 percent AVM free and had his face reconstructed. I highly recommend him. Prayers and best wishes!
Btw, Dr Waner used to work with Dr Suen and asissted with Ryans first major surgery at Childrens hospital in Little Rock. He left to go to NY several years ago. He is wonderful, BUT I am not sure if everyone is aware that he was trained by Dr Suen.
hey barbara know what you and you family are going through because my daughter has one also in her left cheek and it no fun. unlike you family we didn't out what she had until she was 5 years old, we were told that laser was the best for her. we went on the with the laser surgery and it did work for a little while but if i were you and the say laser surgery is best do not do it. i know its been over year but i do have a doctor that helped my daughter and still is helping her. this doctor is from North Carolina and work at UNC chapel hill and his name is Dr.Zdanski. He is such a good doctor for me and my daughter he has put most of the minor mind making to her. If you don't mind i would like to know how you granddaughter is doing and if you have any question you think could answer i happy to help.
Hi,
Haven't been on the site for a long time. My daughter had 4 large high flow facial avm's. At the moment, they are gone and she is doing well. I have a lot of info. about this expereince. Please feel free to contact me. She has a caringbridge site too.
www.caringbridge.org/visit/camelliaschaner
Lots of blessings,
'Margie