Has anyone retained hearing after having a retrosigmoid with a 3cm AN?

[CA Marti]

Hi everyone,

     I'm trying to help my friend who is a musician. Retaining hearing is extremely important in our line of work. Her hearing is perfect now in the AN ear and the doctors suggest doing a translab as a better procedure for her. I was wondering if anyone had success in retaining their hearing and facial nerve with a retrosigmoid procedure and which doctors and hospitals you used? If you happen to have a 3cm or greater acoustic neuroma and had success with the retrosigmoid procedure we would greatly appreciate your input and information.
Thank you!
CA Marti

[donjehle]

Hi Marti!

Last month, an ANA Support Group for Musicians met virtually.  I am not a musician, and so I did not attend it and cannot tell you the turnout nor when they might be meeting in the future.  However, I can give you the name of the contact person, and she might be able to tell you if the Musician Support Group will be meeting again in the future.  And if not, she might be able to give you additional contacts of musicians who have had acoustic neuromas.  Your friend might benefit from talking to other musicians who had acoustic neuromas.

The ANA Support Group for Musician facilitator was:

Stefanie Batson-Martin
407-493-7095
floridaswimmer14@aol.com

I hope this information is helpful for your friend.
Don

[CA Marti]

Hi Don,

     Thanks so much for the useful information and links! I appreciate you responding to my posts! I've been on this forum for a few years, but my friend just found out about their AN only about one month ago, and I know how hard it is right after your diagnosis so I wanted to help in any way I can. The link for musicians is useful, and I was also just inquiring if most large acoustic neuromas are typically done by translab as opposed to retrosigmoid, and why that is? Is translab generally easier or safer in the case of medium to large neuromas. We were also curious as to why retrosigmoid wouldn't be used if the hearing is still perfect in that ear? I'm guessing it has to do with the size but I'm not knowledgeable about the details. I didn't know what the chances are of retaining hearing for her size (3 cm) with a retrosigmoid. I'm sure it depends on the actual AN, but thought some input from other members might be helpful.
Thanks!
CA Marti

[Sleubon]

Hi!

I recently had a retrosigmoid surgery to remove a 3cm acoustic neuroma at UCSF. Before the surgery, I had approximately 80% of hearing where the tumor resided. While my hearing has substantially decreased as of now, the doctors recommended waiting three months after swelling decreases to fully asses the amount of hearing I will retain post operation. I’m hopeful; when I place an earbud in, I can hear ever so slightly though it sounds distant.

After consulting with numerous surgeons across the country, my perspective is that some doctors feel more comfortable performing a translab and others a retrosig based on where they trained. Because I had ample hearing, I decided to find a surgeon who recommended the retrosig with whom I felt confident because through the approach still maintained a small chance of saving hearing and with the translab, there was not. I’m glad to connect with your friend if it’s helpful!

[donjehle]

Thanks, Sleubon, for posting on the forums and for sharing your experience as well as the offer of your help!

Please let us know how you continue to do.

Best wishes on your journey!
Don

[CA Marti]

Thanks Sleubon so much for your response. That was great information to know that you retained hearing so far, I’m very happy for you. I’m sure this will be encouraging to my friend who is now on the forum as well. Best of luck to you and continued success.
CA Marti