Recently diagnosed, and music is my career. Need guidance

[hollo321]

hey while getting an mri on my jaw and neck for something unrelated-swollen neck, tmj pain and headaches, they found 1.6cm acoustic neuroma lightly compressing brain stem, which to say it lightly turned my life upside down. Learning that i might loose my hearing is one the hardest things of my life to accept, since music is my life and i need both my ears in my profession as a sound mixer and musician, so been super depressed lately. I recently did a hearing test and they found very little hearing loss-around 10db in affected ear across the frequencies and perfect speech recognition. Only thing is i have tinnitus for years, always thought it was from loud music, but this might also be the cause. Also maybe causing headaches tho doctor said he doesnt think so. Anyways im left with decision now i guess radiation or surgery.

My number one priority is saving my hearing as my ears are extremely important to me and my career.

Whats wierd is i read some places that with surgery hearing loss is almost a certainty, but the one neurosurgeon i seen so far said he recommends surgery and that 90 percent i will preserve my hearing, and that radiation is more risky?
dont know if that can be true, or is this guy just want to get clients to do surgery on. Brain surgery doesnt sound easy or without its risks, so much prefer noninvasive treatments but atm conflicted since he said better chance with surgery. Anyways im due for another more detailed mri soon and will try see another doc for second opinion. Any advice and guidance based on your guys knowledge and experiences here much appreciated.

[mwatto]

I had Cyberknife in 2019 ( 3 fractions). Have had very little hearing loss. I have an audiology report every year with my MRI. I had no hearing loss though at diagnosis- despite earache which I still get -could be TMJ. That being said I am now 62 years old and mine was in a difficult location so this was best for me. No side effects so far...

[hollo321]

thats great to hear! i see on ur profile your tumor shrunk down from 2cm?  i thought radiation just stopped the growth, didnt know it could shrink it.
do you know if cyberknife has better success in general than gamma knife?
thanks

[DanFouratt]

There is a great video from Cedars in June of this year that provides an overview of all treatments.  I am struggling with what to do and found this one to be very helpful. Good luck on your journey.

[flash]

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.

[hollo321]

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.

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