Good Morning. I recently joined this forum. I have an AVM located on my face. Actually it is behind my left eye, which has effected my eye and lower eyelid area. I would like to connect with someone who also has AVM on the facial area. At times I get so overwhelmed and feel so alone.
Welcome to AVMsurvivors. We do have a number of Facial AVM members and I hope some of them will say “Hi”.
It’s great to have you find us and you are not alone. I’ve moved your post to the Facial area and I hope that means the Facial guys will find it.
Very best wishes,
Richard
Hi D, My son has AVM. He’s 13 now. His is in his chin, cheek, tongue and ear. It has been so overwhelming since we learned of it when he was 2. We live near John Hopkins in MD but his AVM confused them and we ended up traveling to Little Rock AR for help. It was a godsend finding this forum and conversing with others on the same road. You are not alone. All of us AVMers know what you are faced with and the fears and such. We get it, probably more than the closest people to you. We are in your shoes.
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You aren’t alone. I have a right-sided facial venous malformation that extends under my chin, up my cheek to my temple, into my hairline, and behind my right eye. I’ve had ~9 (lost count) alcohol embolizations at Swedish in CO.
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A post was split to a new topic: Nerve Pain 8 Months After Radiotherapy
Good Morning. I have an AVM located on my face. Actually it is behind my left eye, which has effected my eye and lower eyelid significantly. I have undergone 13 surgeries; mostly embolizations, but also a few sclerotherapy. The last surgery, in February blinded me in my left eye. Due to where AVM is located, the doctors have been very cautious and reluctant to remove it. I am a young 54 and very active. I absolutely hate how this has effected my life. I was a certified exceptional education teacher, but can no longer teach. It sucks!
I continually have bleeds, so I have surgeries every couple of months. I have a surgery scheduled for Thursday of this week. My doctors and surgeries are all at UAB in Birmingham, AL. I live in Livingston, LA which is about 20 miles from Baton Rouge, LA. I just feel so overwhelmed and helpless at times. I feel I am just spinning a wheel with no end in sight. It’s like a leak that is plugged, then it just finds another way to bleed out. I don’t believe the embolization surgeries are working. Needless to say, I am very frustrated. I saw a new doctor that wants to remove my eye, lower eyelid, and the AVM. This will stop all the bleeds, irritation and everything that this AVM causes. It is a major reconstructive surgery and being a woman I am very nervous as to the outcome of how I will look.
What are some of your symptoms? What treatments have you had? When were you diagnosed?
I am grateful you reached out and look forward to speaking with you more. Thank you
It sounds like you may do well to seek out more than one opinion. I know a lot of the Facial people have been seen by James Suen at Little Rock, Arkansas and there will be others but Facial AVMs seem to be something of a speciality.
Best wishes,
Richard
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