Considering Radiation instead of surgery at 30 years old

[laloo0695]

Hi everyone,
I was diagnosed with a 1.7 cm tumor. I don't have major symptoms other than severe hearing loss and occasional balance issues. My doctor recommended translab surgery to me due to my young age (30). However, I am very scared of the potential severe complications from surgery. From my research and discussion with my doctor, it seems that the only reason why radiation is discouraged is due to the unknown potential side effects after 30 years. Also, the small chance of the tumor becoming malignant. I'm so conflicted about this decision. Has anyone gotten the radiation at a younger age?

[Mark F.]

I have no experience with radiation and I'm not young, I am 57 and just had the translab surgery 3 months ago on May 13th.   Before surgery I had really bad balance and couldn't run at all.   Now just shy of 3 months later I am great, and training for a 5k.  The surgeons have to tell you worst case scenario, but I am living proof that there are very positive results from the surgery too.   Everybody's risk level is different and I feel that if you are in relatively good health and active your recovery would go well.  I guess what I am saying is don't let the worst case scenario risk discourage you too much if you are currently in good health otherwise.   Now I do still have significant hearing loss in that ear, but no matter which treatment you choose the hearing loss is most likely permanent.  Also I think it is a good idea to do something before there are any other major symptoms.  Sometimes those symptoms are from irreversible damage. 

[SP]

I had Cyberknife @ for a large Acoustic Neuroma in 2015. I was also recommended a Translab surgery at the time and like you was very concerned about the side effects of surgery. At the time I had perfect hearing & balance & surgery was going to mean definite single sided deafness on the left. After many discussions (via email) with Dr Chang I decided on Stanford for CK and have never looked back. They are an awesome team.

I wish you all the best in navigating this tricky decision. Be well.

Stella

[mwatto]

Hi Stella! Just wanted to say hi and so glad things are still going well with you! I am also in a good place. My nerve pain seems to have resolved thank goodness!

[DanFouratt]

Hello Laloo, Like you I had hearing loss, no balance issue but tinnitus.  I was older and had translab recommended.  Like you I did research. I put together a matrix of the information to help me decide.  If you want that please reach out to me at Dan4att@gmail.com and I will share.  I am not a doctor but gather information and put it together in a form that helped me.  In my research I spoke with many doctors at leading institutes.  The best single advice I received was "when you make your decision do not second guess yourself but focus and working towards the best outcome."

As you can see I went CK and have not looked back.  We each need to make the decision that is right for us.

Good luck on your decision journey.

[skier]

Hi,
I'm sorry you have an Acoustic Neuroma, as it is a very complicated medical issue.

I would recommend watching doctors' educational videos from the ANA website. I used the videos to learn enough to ask important questions of different doctors. I consulted 7 MDs at 5 different institutions while I was in Watch and Wait for 2 years.

My tumor turned out to be growing quickly, compared to the normal growth rates, which meant, for me, that surgery was the better choice over radiation treatment.

I too had been afraid of poor surgical outcomes, generally, but then I decided to go to a hospital/program/surgeons who have a track record of great outcomes. With such a difficult surgery, it is important to have the best doctors. I was willing to travel very far, and had insurance that allowed me to. It turned out to be a great choice for me.

My surgery, at 65 yo, was very successful. You can look on this chatboard for more info from my other notes. It's 2 years now, after my surgery, and I have no regrets.

Wish you all the best in your decisions. Hope you can get a few consults with different MDs, who can review your history, MRI, and symptoms meaningfully and help you decide.

Best,
Skier