After 10 years of W&W time for action

[Scribbler]

I learned that I had a VERY small--2 mm AN as an incidental finding 10 years ago when I had an MRI for another reason.  So I've been watching and waiting since then, having regular MRIs every year or so.   However I've had NO symptoms and my hearing is actually better in my affected ear so I've chosen not to treat as it has slowly grown (most MRIs reported "stable AN").  At my recent MRI, however, the radiologist put a number on the size (which hadn't been done since 2007 when it was 7 mm) and I learned that my tumor is now 12 mm -- so even though I still have no symptoms at all, it seems clear it will likely continue to grow at the rate of 1 mm per year, so it's time to do something before the tumor moves from "small" size to "moderate," which would limit my options.   Over the past 6 weeks I've seen nearly 12 doctors--looked at all the options, various surgical techniques and different kinds of radiation.  As I'll be 60 in February, and had open-heart surgery in 2008 to replace a congenitally abnormal aortic valve, the idea of brain surgery is overwhelming.  So I've opted to have GK at UMPC with Dr. Lundsford, as we were very impressed with him, his research, and UMPC.  I'm planning to wait until after my husband and I take a celebration trip for our 60th birthdays in January.  So I'm planning to become a postie-toastie in Feb.  Any suggestions, advice, thoughts all gratefully accepted. 

[Echo]

Hello Scribbler,

I think you've done incredibly well to live 10 years in Wait and Watch with no symptoms. You have been most fortunate.  You've certainly done your research regarding treatment options and it sounds like you've made a decision you are comfortable with.  That's the tough part!  You will find the day of your Gamma Knife treatment to be significantly easier than going through surgery. 

I wish you all the best.  Relax and enjoy your upcoming trip!

Cathie.

[arizonajack]

My AN was diagnosed at 9mm and grew to 12mm within 6 months. My hearing on that side was already gone so I opted for GK and I was 66 when I had it done.

That you have no symptoms and no loss of hearing is amazing.

I think you'll be happy with the choice you made.

[rupert]

I think you are making a wise decision in treating the tumor while you still have many options .

Excellent choice on your treatment team also.     I am a GK alum from UPMC,  also in February some four years ago now.

[robinb]

From another UMPC/Lunsford alum, my advice is since you have almost 3 mos till your GK is to congratulate yourself on making a decision. Now that you did, enjoy your life and don't second guess yourself on that decision.

At the risk of offending some, stay removed from this discussion board due to the amount of less than positive outcomes. I found that reaching out through PM's to those that had similar experiences was of greater benefit.
after you're a postie toastie then spend time giving back to others that come after you.

Feel free to contact me any time.

-Robin

[Scribbler]

Thanks, all, for this great advice.  Since I have no symptoms, I would never have known I have this AN if I hadn't had an MRI for another reason 10 years ago, so I guess I'm an unusual case.  .  . Tests show that my Vestibular nerve is severely impaired, although I still have 100% discrimination/hearing in the affected ear and have great balance--I practice and teach yoga and have no difficulties balancing on one leg in poses like Tree and Eagle.   But I've been told that I might wake up deaf in that ear any day now. . .

SO--I will do what everyone has suggested and be grateful the decision is made, not second guess the decision and enjoy my life!   Three months to GK. . .thanks for the support.