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-   -   Facial AVM (http://birthmark.org/board/showthread.php?t=3275)

Bonniesch 01-06-2009 09:33 PM

Facial AVM
 
Hi All,

I believe I checked this sight 2-3 years ago when lookig for help & support for my son' facial AVM. At that time I was unsuccessful. My son is 13 & we have been dealing with this for almost 4 years. I am looking to find others with children who are deaing with similar issues. The many embolizatins, infections, picc lines, surgeries, doctors, medications have finally caught up with my son. I want him to be able to talk to others who are or who have been in the same boat.
I just began starting up my own group for those with facial AVM's on yahoo.
I thought to check here again & I see there are some of you out there.
We need help. Things have gotten a bit devasting here!

Sincerely,
Bonnie

juliemn 01-14-2009 05:48 PM

Facial AVM's are rare. Although my son has some vessels that show AVM characteristics in his face, he has not gone through anything like your son has.

When I first started gathering information, I contacted a mother in New Jersey who has a son with a facial AVM. She was/is a wealth of information. I believe her son must be in his early teens at the moment.

Please email me if you'd like to get in contact with her.
jshiggie@gmail.com

Julie

LThompson 07-13-2009 06:04 PM

Hi Bonnie,

My daughter has a lip avm, she is 18yrs. now. She had surgery in NY in 2005 with Dr. Waner with much improvement, not perfect, she has some swelling but we can live with that. She never has had embolizations or lasers. It hasn't worsended except for a little vessel bubbles up a little on her lip sometimes & maybe the swelling has increase a little bit. Nothing we can't live with. I remember trying to reply to you when you first tried this site yrs. ago. It would no longer allow me to login, and would not allow me to create a new one & I finally gave up till now with the new site I was able to make a new login. Please email me directly at azblt@aol.com I would love to talk with you as I have 2 other ladies I keep in contact with, one with a lip avm, and another with a son with lip avm, another with facial avm who is pregnant now. All with diff. experiences, yet all are doing ok now. Linda

LThompson 07-13-2009 09:46 PM

Hi Bonnie,

My daughter has a lip avm, she is 18yrs. now. She had surgery in NY in 2005 with Dr. Waner with much improvement, not perfect, she has some swelling but we can live with that. She never has had embolizations or lasers. It hasn't worsended except for a little vessel bubbles up a little on her lip sometimes & maybe the swelling has increase a little bit. Nothing we can't live with. I remember trying to reply to you when you first tried this site yrs. ago. It would no longer allow me to login, and would not allow me to create a new one & I finally gave up till now with the new site I was able to make a new login. Please email me directly at azblt@aol.com I would love to talk with you as I have 2 other ladies I keep in contact with, one with a lip avm, and another with a son with lip avm, another with facial avm who is pregnant now. All with diff. experiences, yet all are doing ok now. Linda

mmlongood 02-11-2011 10:29 PM

facial
 
Bonnie,
I am not sure if it is too late to reply to your message. I know it has been some time since you posted this, but my son is 13 now and has a facial AVM. His has been there his whole life and he has had MANY surgeries. We are taking him for more reconstructive surgery next month. We live in Richmond Va and his surgeon is Dr Suen in Little Rock. It is a very tough age and I totally understand what you and your son are going through. It is the same situation for us. He feels like he is the only one. Thank goodness he has male cousins his age, because they are his only close "friends". You can e-mail me anytime.
mmlongood@aol.com
Monica Longood~Ryan's mom


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