Wait and Watch?

[HoundMom]

Hi, newly diagnosed with a 1.5 cm AN.  I have tinnitus, minor hearing loss and trouble with fullness.  Trying to make a decision between wait and watch and Gamma Knife.  I am leaning toward wait and watch, but then how often do you have to have an MRI to check it?  Leaning toward wait and watch because the Dr. at the Gamma Knife consult said that I would not get any symptom relief from the Gamma Knife procedure.  Torn between why bother then and being scared that letting the issue go would just make the whole thing worse later on.  I am very anxious about this screwing cage to my head thing which is only making it worse I think.  Any input would be appreciated.

[Derek]

Hi Joanne...

Welcome to the ANA Discussion Forum. From a personal perspective and following extensive research, I made the decision to 'watch & wait' almost 12 years ago following my AN diagnosis. My initial symptoms of tinnitus, balance issues etc have all abated over the ensuing years albeit I do have single-sided hearing loss which is of no problem to me. I have no regrets whatsoever with having chosen to 'watch & wait' as I do believe it carries the least risk of all available treatment options notwithstanding the caveat of regular MRI scans and acting upon the advice and guidance of a consultant in whom you have total trust.

You raise the question of how often an MRI scan is required when opting for the conservative management ('wait & watch') treatment mode. Your consultant will offer advice upon the frequency of MRI scans but generally, as in my case, they are undertaken annually but that period can eventually be extended if there is no increase in the size of the tumour and no escalation of symptoms.

What I would point out to you is that irrespective of what treatment option you eventually decide upon you should still have periodic MRI scans indefinitely to check that the tumour is not growing or that re-growth is not occurring following intervention via microsurgery or radiosurgery. So in effect, even if you do decide upon intervention the fact that you will continue to have MRI scans is akin to being in 'watch & wait'.

Carry out thorough research into all of your options until you are absolutely certain that you are making the ultimate treatment choice that is the right one for you.

Best Regards

Derek

[arizonajack]

Hi Joanne.

My AN hearing was 90% gone by the time I was diagnosed with a smaller AN than you have. 6 months later at my second MRI my AN hearing was 100% gone and my tumor had grown about 20%.

That's the disadvantage of Watch and Wait if you only have a partial hearing loss now. Even though the tumor might grow slowly (if at all), it's still insidiously eating away at the nerve and you risk SSD (single sided deafness) in as little as a year.

I've reconciled myself to my SSD but now and then I put the phone to my AN ear and hear nothing. Very sad.

I've read studies that indicate that gamma knife (one time) or cyber knife (multiple smaller doses of radiation) has a decent chance of preserving hearing.

Don't sweat the head frame. I got put to sleep for 20 minutes while they put it on. Piece of cake.

And cyber knife doesn't use a head frame like that.

There are also surgical procedures that preserve hearing.

It's up to you to decide how important your hearing is to you. Unfortunately, you won't know what SSD is like till the hearing is gone and once it's gone it's not coming back.

[HoundMom]

Thanks to both of you for replying.  Unfortunately, that is exactly where I find myself stuck between both of your experiences.

[Echo]

Hi Joanne,

My AN was 1.8cm when I was diagnosed in May 2012.  I had similar symptoms to you, but I also developed balance problems.  I was told these tumors grow very slowly and I had plenty of time to make a decision on treatment.  I choose to take my time and do lots of research in the hopes that my AN would not grow and I could wait and watch.  I had one MRI done 6 months after diagnosis and there was minimal change.  My symptoms started to change over the next 6 months and I requested another MRI as I was coming up to my first year post diagnosis.  My June 2013 MRI showed the AN had grown to 2.4cm!!  I knew I had to do something due to the speed my AN was growing and decided on Gamma Knife.  At this size, Gamma Knife offered me a one day treatment.  I did not want to wait until the tumor grew any larger and go through the fractionated treatment and for many reasons I did not wish to pursue surgery.   My neurosurgeon explained to me that when the tumor grows so do your risk percentages for complications with each treatment, so I wasn't willing to watch my AN grow any further.  My Gamma Knife treatment was Sept. 11.

If you choose to wait and watch, definitely make sure to have yearly MRI's.   If you choose to go ahead with Gamma Knife don't worry about the head frame.  It's not pleasant but there are far worse things one can go through.  In my case I requested an Adivan to calm me down prior to the frame being put on.  The neurosurgeon used needles to freeze each spot where the frame would be attached.  I ended up with my entire skull frozen so that other than having a slight pressure feeling from the frame, there was no pain.  The needles that froze me just felt like a sharp pinch.  You are kept comfortable the entire time the frame is on.

It's a big decision so take your time and make sure you are comfortable with your final choice.


Best of luck!
Cathie.