My teenage son has AVM on lip - Vascular Birthmarks Foundation Forum
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  #1  
Old 10-20-2004, 05:45 AM
bchamp bchamp is offline
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Default My teenage son has AVM on lip

I am new to this site. My son was diagnosed with an AVM on his upper lip about 2-3 years ago. He is now 16. He had surgery at NYU 2 years ago, it looked like it was gone for a year, but 6 months later it swelled up again. Now docs at NYU advise a second surgery, but we are concerned, we want to do all we can to get rid of it so that he can feel "normal" during these vulnerable years. We wonder if we should pursue embolization. Anyone have any similar experiences?
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  #2  
Old 10-20-2004, 04:53 PM
nickbar nickbar is offline
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Default Re:My teenage son has AVM on lip

I do not have experience to share with you, but I would like to welcome you to the group. Also, hang in there...someone will see your post soon and have experience to share.

Have you talked with Dr. Waner/Berenstein in NYC?

Corinne
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  #3  
Old 10-20-2004, 06:35 PM
eprmo eprmo is offline
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Default Re:My teenage son has AVM on lip

I have a teenage daughter who was born with a large hemangioma on her nose. She has had treatmentin the past and is still undergoing treamtment. I am sorry I have nothing to add about his avm, but just support, and knowing that dealing with a teenager can be quite emotional for the whole family. You are not alone.

Elissa
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  #4  
Old 10-20-2004, 06:37 PM
eprmo eprmo is offline
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Default Re:My teenage son has AVM on lip

oops, I forgot to mention, we also took my daughter to NYU and saw a few different "vascular specialists there"..We ended up with Dr. Waner, instead.

Elissa
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  #5  
Old 11-09-2005, 12:05 AM
sunflower
 
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Default Re: My teenage son has AVM on lip

My 14 yr. old daughter had surgery Oct. 19th '05 with Dr. Waner in NY for her lower lip AVM. She is doing good, Dr. Waner feels he got it all, if so it would be a cure. We are very happy with the outcome & can email you pictures. You can email me at azblt@aol.com for more info. I'm not on my home computer @ the moment. Linda T.
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  #6  
Old 11-10-2005, 06:37 PM
mikethepainter
 
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Default Re: My teenage son has AVM on lip

I had an AVM on my lip that appeared 11 years ago (at age 19) that was supposedly cured surgically by a plastic surgeon. Two years later it was in my nose and treated with laser surgery. Two weeks later the damaged skin broke open and I had blood spraying out of my face and had to hold onto it myself for four hours until an operating room was available. A year later it was surgically excised from my nose and lip and once again I was "cured." I had such an impressive team of surgeons at Emory University that I believed that it was. When I was 25 I noticed a pulse on the side of my nose. I was no longer in college and had no health insurance. My condition wasn't covered until last year and then I was told I was not curable. I saw 9 surgeons at Emory last year and they all either referred me on or sent me home. After losing all hope I found this site (actually looking for Dr. Waner) and was referred to Dr Yakes. When I met Dr. Yakes he told me immediately that he had seen my condition many times before, that it was curable, and that he had cured it before. I came back from my 5th treatment this Monday and he believes that he is finished. In two months I will see a plastic surgeon to clean up my nose and lip. For now I believed that my AVM is gone. That familiar pulse is certainly not there and someone that actually knows my condition has treated it. I sincerely believe that there is no way to treat an AVM with a knife. That is precisely why no one would attempt it at Emory. Do not let anyone attempt to surgically remove an AVM unless they can explain to you why they shouldn't be surgically removing an AVM. Plenty of surgeons will be willing to try it. There are only a few experts on AVMs in the country. Don't let anyone else touch you or your child.



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  #7  
Old 11-18-2005, 04:21 AM
juliemn juliemn is offline
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Default Re: My teenage son has AVM on lip

I agree with Corinne,

Contact Dr. Berenstein in New York (Beth Israel/Roosevelt hospitals).*
Another option is the Vascular Anomalies Clinic at Boston Children's Hospital.

Embolization is certainly a valid option, and I say yes...you should. But I'm not a doctor, and I say yes because it is the right choice for my son. The doctors at these clinics will give you the correct diagnosis and/or treatment options for your individual needs.

Cranio-facial AVM's can be quite complex and difficult to treat.* When I've requested advice from the medical community these are the two clinics that everyone agrees on.* You can also find several people around here that have had excellent care with these places. I see there is someone here who has also opted for treatment with Dr. Yakes in Colorado. I have heard many things about him also, but I'm not sure that he treats pediatric patients.*

My son has both cerebral and facial AVF/AVM's.* We live in Minnesota, but are currently seeing Dr. Berenstein in New York for this.* *In fact, Ben (our son), is scheduled for embolization of his cerebral AVM with Dr. Berenstein in 3 weeks. I've put some links below to give you some information about these clinics.* Both clinics are well respected for treatment of AVM's.

If you have any questions feel free to email me at the address in my sig.

Julie


Boston Children's Vascular Anomalies Clinic
Dr. Berenstein's Bio
You may find this site helpful also (personal experience with facial AVM)
Funny Face

Dr. Berenstein's Office
Center for Endovascular Surgery
212-636-3400
212-636-3217 (Mary Madrid...Dr. B's assistant)
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  #8  
Old 11-18-2005, 12:13 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Default Re: My teenage son has AVM on lip

Dr. Yakes does treat kids. And is really good with them, when I went for treatment my nephew came and Dr.Yakes was amazing with him and he wasn't even a patient!!

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  #9  
Old 11-18-2005, 02:45 PM
juliemn juliemn is offline
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Default Re: My teenage son has AVM on lip

Thanks for that information Kristie...I wasn't sure.

Julie
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  #10  
Old 11-19-2005, 02:26 AM
sunflower
 
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Default Re: My teenage son has AVM on lip

I'm the mother with the 14yr.girl who had surgery with Dr. Waner. You should go to page 4 and look at 2nd posting right side & highlight name Lise. Than you can email her. She was our 1st contact over a yr. ago. She has had lip AVM surgery 20yrs. ago when they didn't know anything. She would not let anyone touch it till 2003 surgery with Dr. Waner. It's been almost 2yrs. & she's doing great. Her lip looks wonderful. She has a website in French. She will reply back to you with her story & her pictures if you ask. I can keep you posted on my daughter if you send me your email. We go to NY Dec. 8th for 7wk. check up.
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