I have an AVM of my right ear and I want to talk to people who have had treatments done and what they thought of them. I am seriously considering removing the ear but wondered if there was others who went through that radical surgery and if they regret it?
Firstly a large warm welcome to you! I really hope our group will be able to pass along some experiences that may help you be at peace with your decision. I had a brain AVM that ruptured and ultimately had gamma knife, if was in a difficult location so that was the best option for me. It ended up being the right decision, however sometimes knowing if it is right or not takes a while. I can’t provide any personal experience in respect to your case as quite different than mine. Personally I completed trusted my neuro surgeon, which I think was also vital for me. My recommendation is to ensure you have complete trust in your Dr., and if not, seek a second opinion.
If you look in the top right area of the screen you will see a magnifying glass. You can do some searches here and see if any threads are valuable. Just pop something like Ear AVM in there and see what comes up. I saw a few older posts when I did it and don’t recall too many similar to your case recently. Take Care and once again welcome! John.
Welcome to AVMsurvivors!
I can say I’ve not heard of anyone in recent years saying that they elected to remove an ear, though I know one or two of our @Extremity AVM folk have contemplated an amputation, which is shocking but may be a last resort. Is excision an option that your doctor has offered?
From what you say in your profile, the treatments you are being offered are similar to those I’ve seen offered to other of our @Facial AVM patients – for example the bleomycin sclerotherapy. I think you’ll have one or two friends in the Facial group who I hope may be able to share how they have got on with treatments near their ear or near their eye.
We also have another new member who was reporting an ear AVM recently but while it was discolouring their ear significantly, I think, it also sounded quite involved much below the surface. I’ll try to remember who that was as well.
Is your AVM wholly in your outer ear? I’m thinking (and I’m no doctor) that unless it is wholly in the excisable part, removing it could cause more trouble.
Sorry, lots of questions!
The other recent ear AVM was this one: