Pre-Treatment Options > Pre-Treatment Options

Recently diagnosed, and music is my career. Need guidance

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hollo321:

--- Quote from: flash on August 13, 2023, 02:37:13 pm ---I am not a professional musician, but play as a hobby. I am married to a professional musician and our daughter is quite a little piano player. I was diagnosed with facial tingles/pain, with minimal hearing loss. I saw several surgeons who recommended surgery and a few radiologists who recommended radiology. I ended up seeing a specialist with a fantastic reputation who does both. He completely understood my two biggest fears - facial function and my hearing. No one else really grasped why hearing my husband’s music and my daughter’s recitals were a big deal to me. He did before I had to say much more than “music is important to our family.” He recommended gamma knife and it has really been the best choice I could have made. It was 1.8 and touching my brain stem. 7 years later it’s 6mm and my hearing is just a touch worse than at diagnosis. When they planned the radiation they were able to do a couple of things to shield my cochlea from taking a direct hit. If you’re near the southeast or willing to travel to the southeast, I cannot possibly recommend Dr. Paul Lambert at MUSC enough.

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Great to hear your success as well :)
your tumor also sounds like mine, very similar size, and symptoms. Im starting to think perhaps most surgeons automatically lean towards surgery since surgery is what they do, but perhaps not the best for hearing preservation and such. Didnt know till i read your guys replies that the tumors can shrink after radiation. Thought all it did was stop the growth so thats great to hear!
Radiation might indeed be the best route, as less invasive and i think less risks. Thanks!

Greece Lover:
One of the weird things with these tumors is that you have all these different choices for treatment options. They all have certain benefits and drawbacks.  It can be confusing.  I would agree with you that 90% seems like a high number for someone to promise on hearing retention. My tumor was 1.2 cm and I was told 60-65% chance of saving hearing.

Another think to make sure you ask about is that different surgical approaches have different hearing outcomes.  Middle-fossa is generally the best chance to save hearing, but many places do not do that surgical approach. Retro-sig can also save hearing.  Translab will always result in single sided deafness.

Search around on the forum. I know there are many conversation threads on here about and amongst musicians and you might find that helpful or some more resources.

donjehle:
I agree with Greece Lover.  Search (from the Home page) on musicians.  There are many threads for musicians out there.

For example, here is one:  https://www.anausa.org/smf/index.php?topic=22639.msg979784038#msg979784038

I wish you well on your journey!
Don

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