Avm in the mouth

Has anyone ever heard of a AVM in the Maxillary Area in the Mouth, My daughter has had 9 surgerys

since she was 5 and know she is coming up on 12. so for 7 years we have been going back and fourth to Boston Childrens Hospital. It is so fustrating. She has other things going on because hers in the mouth, where no dentist around her will even go near her upper right side of the mouth , and because of that she has developed gingervitious in that area, and know she is bleeding spontanouesly at any given point of the day or night and wakes up with bleeding.

does anyone have any advise

thanks

Brenda

Hi Brenda D. There are 2 sub-groups here you may wish to join...

http://www.avmsurvivors.org/group/extremityavms

http://www.avmsurvivors.org/group/parentsofavm

Welcome to the site!

Hi, Brenda, there are a few anti-hemorrhagic drugs that are used for HHT and AVMs that help reduce bleeding that may help your daughter. George's daughter (http://www.avmsurvivors.org/profile/GeorgeChristou) has taken tranexamic acid to reduce bleeding with some success. Send me a message if you would like to talk more about this.

Hi Brenda,

We discovered my upper left maxillary AVM when I was 10 and am now a healthy, happy 33 yr old. I had a small portion of my jaw removed which is hardly noticeable and have had a number of
embolizations.

The bleeding I experienced when I was younger was as if someone turned on a faucet. I would just keep swallowing until it stopped and I was left with blood clots in my teeth. I have been treating this AVM since then with embolizations. 5 to date.

Please contact me if you have any questions.