Hearing issues after radiation for Acoustic neuroma

Posted by deb8 @deb8, Nov 16, 2021

I was given radiation treatment for my acoustic neuroma which left me with a large hole in my eardrum. This constantly bothers me I hear lots of noises in it constantly mostly a loud ringing and whooshing sound I put cotton in my air sometimes to see if it will calm it down but usually not. I was told don’t worry you will get it sewn shut when your treatment is finished well it’s been a couple of years and nobody wants to see it shut. I have a big problem with congestion on the same side of my nose as that ear. I won’t have hearing that comes back in that ear so why bother. I think it would make a difference even in my nose and also the loud noises in that ear. How has anyone else been treated for this? I have a bunch of autoimmune rare health issues that take me to many doctors. I feel like I am out of control and just spinning in circles with most physicians not even wanting to accept me as a patient because I have so many autoimmune issues. I really wish there was a place to go where a group of doctors at the same facility would help people like me instead of many doctors yet they are all unsure of what to do for certain. I also had a Latera implant done that seems to have helped some but right side of nose is usually still congested.

Interested in more discussions like this? Go to the Brain Tumor group.

Hi @deb8. I added your post to the Brain Tumor group and the Hearing Loss group as well as the ENT group. I did this to bring in more members to the discussion, like @ccubed @sepdvm @sarasally2 @pedie who also have experienced hearing issues after radiation for an acoustic neuroma.

Have you considered requesting an appointment at Mayo Clinic where multidisciplinary teams work and coordinate care of multiple conditions?

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So sorry to hear of your many medical issues. It makes mine seem minimal. I had radiation to my skull for a tumor growing near my ear drum, after surgery was done. While it has caused constant tinnitus of ringing and buzzing, there is no ear canal or eardrum left after a temporal bone resection. I wonder how much of your noise is from the open ear drum and how much from radiation damage to the inner ear area. A good question for your ENT. I would highly recommend a consult at Mayo Rochester, particularly with Dr. Colin Driscoll, who was the primary ENT surgeon for me. Perhaps some of your questions could be answered there. They have done an amazing job of bringing in various specialists as I have needed them during my 9 1/2 years there as a patient. We drive 10 hours from Ohio to MN and it is worth every minute for the quality of care there.

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I didn't have Neuroma but I did have radiation and the only thing that helps me with my tinnitus is a hearing aid. It won't completely take it away, I don't think anything will, but it definetly dulls it.

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