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AVM Survivors Network

AVM behind eye. Has anyone gotten treatment for such a case?


#1

I have an AVM behind my left eye in the socket. It presses against the optic nerve. My vision is not affected but it is painful. I’ve seen some doctors about other AVMs in my face. They want to do sclerotherapy on those but my eye is of course a different case. Embolization and sclerotherapy cause bruising and doing something like that could cost me the sight in that eye. They said I would have to see a specialist in Boston for it. I’m very curious if anyone else has experience with an AVM in the orbital. If you have, have you had treatment? How do you go about it? What doctor did you see?


#2

My daughter had an orbital AVM behind her left eye. Since she was very young, we sought treatment at Vanderbilt. She had her AVM removed by Dr Kevin Kelly.
She is now 16 years old (the picture is her) and we were told that it might have come back. I didn’t know that they could. I’m seeking any information regarding this topic. Has anyone had a similar experience?


#3

Wow! I figured I wouldn’t ever get an answer because it’s a rather abnormal occurrence. I’ve always wanted to visit Nashville and that’s so much closer than Boston! Do you know how they removed it? Reoccurrence is definitely a problem that some patients have. It probably came back because it wasn’t completely removed. Perhaps she had an embolization? Reoccurrence can happen with that sort of procedure.


#4

I’m really having hard time acquring information on orbital AVMs. With maddie, we noticed swelling under her eye lid shortly after birth. We were told for months that it was a hemangioma; however, she started having seizures and holding her breath from they assumed was pain (she was only 6 months old)
When the pediatric opthamologist determined that the AVM was causing vision problems (the growth caused her eyelid to distort to the point it blocked her vision) we were referred to Dr Kelly (crainofascial plastic surgeon) An angiogram soon confirmed that we were dealing with an AVM. There was some urgency in setting up the surgery because the size was rapidly growing. Everything seemed to be a success. We followed up for 8 years and we were released from care with the impression that she was cured. Recently, she has been having headaches and vomiting. He eye has started to slightly bulge out and we were told she needs a CT yesterday. I am worried, scared and seeking all the information I can.


#5

It is quite a scary situation. I’ll keep you and your daughter in my thoughts. My avm is not visible from the outside. The only way you would know is because my left eye bulges out a bit. It is a rather difficult case to tackle. There is the risk of losing sight in the affected eye. I’m going to see a radiologist for some other avms in my left cheek. He’s comfortable treating those with sclerotherapy but as for the one behind my eye he has mentioned something about a specialist in Boston. When I go to see him, I’ll ask him about it and update you.


#6

Good luck. We were told that there were many risks associated with orbital avm’s but she did great with the surgery. (Loss of vision and or even the eye itself)
Her scaring was minimal and the recovery period went well (at least for 15 years)
Please keep me posted on your progress


#7

Will do! In the meantime, one doctor I’ve heard of is Dr. James Suen in Little Rock, AR. I’ve heard some really good things about him. Here’s a link to another post I found about a patient’s experience with him: