Newly diagnosed, success rate for young person and how long are studies

[lalala80]

I have just been diagnosed with an acoustic neuroma.  I am 31 years old and from what I have heard from two doctors, surgery is a better option because my age makes it likely it could become a problem again 10, 20, or 30 years down the line, when I would less be able to tolerate surgery.  I think the longest study I have found for this is 10 years.  But I would think after 10 years with no growth, you could feel pretty safe that it wouldn't grow, wouldn't you?  Is anyone on this board a younger person who has chosen the radiotherapy over surgery?

[ksiwek]

Hi there!

I just turned 31 and am coming up on the 2nd anniversary of my AN surgery (6/4/10).  My tumor was over 4cm so I did not have to make the decision between surgery and radiation...it had to come out!  However, I wanted to let you know there are plenty of younger AN patients out there and I would be more than happy to listen, provide insight and/or share my story.  I wish you the best of luck with your journey!

Kris

[leeclinton]

I ditto what Kris said.  I am 33 y.o. and just had a 3.3cm AN removed surgically in January (2012).  I too am happy to share my experience.

[Twindy]

I don't have the answers as I am still trying to figure it all out myself, but if you do a "radiation young" search on the forum, there are past threads that address this issue that might be helpful!

[phx]

I have just been diagnosed with an acoustic neuroma.  I am 31 years old and from what I have heard from two doctors, surgery is a better option because my age makes it likely it could become a problem again 10, 20, or 30 years down the line, when I would less be able to tolerate surgery.  I think the longest study I have found for this is 10 years.  But I would think after 10 years with no growth, you could feel pretty safe that it wouldn't grow, wouldn't you?  Is anyone on this board a younger person who has chosen the radiotherapy over surgery?

Hi,

I'm not sure how young you're looking for, but I am 25. I was diagnosed with a 4 cm tumor at the age of 23. I had surgery in Feb 2010 which resulted in 30% removal, followed by cyberknife radiation in August of 2010. In April of last year, I had a shunt placed. Yes, my doctors recommended surgery first also due to my age. Every case is different, but I would be happy to share my experience.

PHX

[lalala80]

Mine is currently 2.3 cm.  But I feel like I can feel it growing every day.  It is hard for me not to just go ahead and schedule the surgery, but with the rarity of the condition and the potential disastrious consequences, I know I need to try to find the best doctor possible.  Are you now deaf in that ear and do you have balance problems.  I am an athlete and balance problems would really decrease my quality of life.  Even if you could get about the day pretty well doing just regular stuff, I know I would be unhappy if I could no longer play sports.  I currently play soccer, ultimate frisbee, I fence, and run trail races up mountains and stuff, I also do some jujitsu.  The balance problems due to surgery actually scare me more than losing my hearing. 

[sharondaniels]

   Well, I didn't think I was classified as young when I was diagnosed in Oct. 2011, but apparently at the age of 47 the drs think so.  Mine was less than 2cm, likely I have had it more than 10 years.  I don't really have balance issues, the only main symptom was loud ringing and loss of a good amount of hearing.  On Dec. 1st I had gamma knife.  Since that time, I do have more headaches, a little bit of dizziness, and perhaps a bit louder ringing.  I have 3 months to go before my next MRI, but hoping for good results!   
good luck!  just check all your options.

[james e]

I don't know what "older" means to you, but I had my surgery when I was 60 years young, and had no problems. I would discount age as a factor. Physical fitness is far more important than age when it comes to your ability to withstand a lengthy surgery. I would advise you and anyone else that has not been treated, to get in tip top physical condition...muscle up a little, correct weight, no smoking, eat the right foods. It will help you recover.

James

[ksiwek]

You will hear this over and over again, but it is true.  Everyone recovers differently.  However, I can tell you that I was in pretty rough shape going into surgery from AN symptoms and I was 2 weeks post c-section (delivery of my son).  I couldn't see straight, walk on my own, etc.  My tumor was large and the pregnancy swelling caused the side effects to come on more quickly.  I went from a 5% loss of hearing when diagnosed to near 100% 8 weeks or so later at the time of surgery.  Prior to my pregnancy, I worked out frequently (6 days a week or so...) so I consider myself to be a very active adult.  I will tell you that it took me a longer time to recover and become more physically active, but I had many factors at play....pregnancy weight to lose, 2 major surgeries in a 2 week period and caring for a newborn.  Once I got my sea legs I walked a couple of times every day.  Last spring/summer (1 year post op) I did a few 5ks, a 10k and a half marathon.  I did this in conjunction with ongoing vestibular therapy, gaze stabilization exercises and some yoga.  The more I exercised the better I got.  I had/have more trouble with environmental factors and my balance than I do with holding a yoga pose for example.  What I mean by that is...if I am in a crowded place with flourescent lighthing, a lot of noise or tons of movement I feel dizzier in my head.  I apologize if I am not making any sense    My main point is that I had more symptoms than most folks going into surgery and although it took me a bit longer to 'recover', I am doing well and have seen improvement slowly but consistently.  I was very scare about what life would be like post op.  It will always be different...but that doesn't have to be a 100% negative thing.  For me it has inspired me to do things I never thought I could do and I have found that I am a stronger person than I ever knew...

[phx]

Mine is currently 2.3 cm.  But I feel like I can feel it growing every day.  It is hard for me not to just go ahead and schedule the surgery, but with the rarity of the condition and the potential disastrious consequences, I know I need to try to find the best doctor possible.  Are you now deaf in that ear and do you have balance problems.  I am an athlete and balance problems would really decrease my quality of life.  Even if you could get about the day pretty well doing just regular stuff, I know I would be unhappy if I could no longer play sports.  I currently play soccer, ultimate frisbee, I fence, and run trail races up mountains and stuff, I also do some jujitsu.  The balance problems due to surgery actually scare me more than losing my hearing.

No more hearing in my left ear and yes to the balance issues. Before surgery, my balance was worse. I was totally NOT for surgery, but with my balance and coordination deteriorating, I figured that I had to do something. I think that I've gotten used to being out of balance (if that makes sense). I'm not sure if it's me getting better or me learning to live with it. I think it's both.

It is very understandable that you are scared. Take some time to find doctors you trust. This didn't solve all my problems, but it certainly helped me.

PHX