17 years ago my right ear was surgically removed because my avm was so bad. My ear was bluish red and was totally deformed. Once removed all the noise in my head stopped. I used to hear my heart best in my ear so loud that sometimes I had trouble hearing people when they were speaking to me. Well recently a new lump has grown in the area where the ear used to be. The doctor said it is another avm. Now every time I am chewing food I hear a clicking sound in that ear. I am afraid and I don’t want top live with this new noise. Has this happened to anyone? I could use some support.
Dawn, it may be time to consult Dr. Suen in Arkansas. I am sure he has some ideas for how to keep your avm quiet. Friend me, and I will be happy to send you his email. If you talk to him, ask him what he thinks of Sclerogel -- I'd like to know if he has seen it yet.
I am so sorry Dawn :( I can only say that I live with very severe tinnitus, which is ringing/noise in the ears/brain. It is permanent and nothing can take it away, so i truly understand your worries. What I found that helps is white noise machine, even white noise app on my phone, and to try as much as possible to not think about it. I know its hard. I sincerely hope that you get it fixed.
Hi Dawn, I have a scalp avm just above my left ear. I suffer from ringing in my ears, and at night when I lay down and try to sleep I hear my heart beating like a drum. I also hear a gurgling draining sound with certain movements of my head. All of this makes it very difficult to sleep well.
I have had problems with my jaw for many years and had a lot of clicking when eating which sounded like it was in my ear - just wondering if the clicking you are experiencing/hearing is more of a dental issue and not avm related.