timescale hearing loss after gammaknife

[cibi80]

Hi!

I was interested in the time-scale for hearing loss after gamma-knife.
My neurinoma was discovered accidentally (participated as voluntary in brain research) and was completely asymptomatic, despite being decently big (~2cm). I had GK in Italy 6 months ago, and had the first check-up MRI last week. The centre of the tumour is completely black, which is good news and my hearing is still intact. The doctor said that if hearing is still good in one year, then there's a good chance it will stabilize...
I was wondering, what's the general experience? How long after gamma-knife can you just "relax" and think that things aren't going to get worse anymore? :-)

[arizonajack]

The centre of the tumour is completely black,

Necrosis is our favorite word.

And shrinkage.

Necrosis and shrinkage, our two favorite words.

my hearing is still intact.

You're one of the lucky ones, so far.

The doctor said that if hearing is still good in one year, then there's a good chance it will stabilize...

There's a good chance that it could happen that way.

what's the general experience?

The following article is about hearing preservation after GK:

http://www.acoustic-neuroma-brain-tumour.org/english/pdf/Gamma-Knife-Strauss-Neurosurgerey.pdf

How long after gamma-knife can you just "relax" and think that things aren't going to get worse anymore? :-)

Never.

Just kidding. Maybe.

Shrinkage of the tumor often occurs within 2 to 3 years after GK.

Check out the following images that show necrosis at 6 months and shrinkage at 2 to 3 years.

http://ars.els-cdn.com/content/image/1-s2.0-S0360301612004336-gr3.jpg

If your tumor shrinks like that by the end of 3 years you can relax. A little. But you are still looking at having MRIs every few years after that.

[cibi80]

Thanks a lot!
Yes, accidental discovery without any symptoms was quite lucky. Also, as far as I understand, being relatively young (33) gives better chances for hearing preservation. Given that I spend most of my free time singing in choirs, I hope it doesn't get much worse, as we all do anyway :-)

One more question: the only thing that happened in the past six month, is tinnitus, that started about two months ago. It's continuous, not very loud, mostly annoying when you are trying to fall asleep. Do you guys have experience of tinnitua disappearing/reducing at a certain point, or is is something that once you get it, will stay forever?

[arizonajack]

One more question: the only thing that happened in the past six month, is tinnitus, that started about two months ago. It's continuous, not very loud, mostly annoying when you are trying to fall asleep. Do you guys have experience of tinnitua disappearing/reducing at a certain point, or is is something that once you get it, will stay forever?

In my case, my tinnitus started in Dec 2011 (along with everything else) but stopped in about October 2012. Since then I have had only occasional recurrence of tinnitus every few months at a very low, barely perceptible, level. Those recurrences usually lasted only a few days until recently. The latest recurrence has lasted several weeks but is so faint it's easily ignored.

Others, I'm sad to say, have not been so fortunate. Just goes to show that everybody's experiences with an AN are different.

[Nannybee]

My hearing took a turn for the worse in the months after treatment then was holding stable. After a 10 hour flight from Rome back to the US 6 months after treatment, I started having a second tinnitus sound. Now, 9 months after treatment, my hearing is back and better than before treatment but the tinnitus remains.
Cibi80, do you live in Italy?

[cibi80]

Nannybee: I moved to the Netherlands, but I am originally indeed from Italy. thanks for your reply, interesting... but did they prescribe you steroids to get the hearing back?

[mesafinn]

Tinnitus after GK is not uncommon.    It may dissipate, but likely you will just get used to it (believe it or not).

I am 11-months post-GK and still have my hearing, thankfully.

My recommendation, especially since you sing:  avoid loud spaces and do everything you can to protect your hearing not only in your AN ear but in your good ear.  I would avoid having anyone "sing in my ear" for awhile.   Enjoy your music--but protect, protect, protect.  You want to retain your hearing for a lifetime, if possible.

Use earphones whenever possible, including flying.

Stay well!

[PaulW]

Most hearing loss occurs in the first 2 years, with an Average of 5.86db per year
However between 3 and 5 years average hearing loss slows down to 1.86 db/year
If you did nothing and remained in watch and wait average hearing loss is 5.39db/year

http://www.ncbi.nlm.nih.gov/pubmed/22937934

Another Interesting Paper

http://www.ncbi.nlm.nih.gov/pubmed/23216466

[cibi80]

mesafinn: the whole point of good choirs is that people don't shout in each other ears :-) Anyway, I do try to get away from timpani and trombones...

PaulW: thanks for the papers! In general, as far as I understand the variance around the average data is pretty large, since everything really depends on the specific configuration and position of the neurinoma. It it's really close to the cochlea, then more radiation will hit the cochlear and the probability of hearing loss will be higher

[jsanders1379]

I play in an orchestra & have been wearing shooter's earmuffs-they cut out the sound when it gets over 80Db and they have microphones so you can hear everything at whatever volume you choose-works pretty well...

[ampeep]

How do others in your orchestra react to your shooter's earmuffs?  Never thought about using those! 

This morning had a 1 month post GK appt w/ my radiation oncologist.  He asked if I had any side effects; informed him that my tinnitus increased & I felt a little dizzy, a couple of days after, but that it passed.

He  told me they were able to minimize the radiation to my inner ear, so was hopeful I'll retain my hearing.

Asked me if I had to take any steroids & I said no.  He said that's good; if there are side effects, they would show up within a month.  (Was glad to hear that.)

Keith

[jsanders1379]

Actually, one other cellist wears them, too (we're right in front of the horns)-several others have asked me about them & so far nobody's complained... (I even wore them  @ our last concert-I'd rather look weird/dorky than destroy my hearing or quit playing...

[ampeep]

Seems like a good idea for all of the cellists!  I only played trumpet in school, but always felt sorry for those who had to sit in front of us.

[cibi80]

Lots of musicians around, looks like... How are you guys coping with the AN? I'm just an amateur musician, but I'm quite scared of hearing loss and about having to abandon my favourite hobby :-(

[ampeep]

A few times a year, I get together w/ my friends to 'jam' - mostly with acoustic guitars.  Since we sit around a circle, am not sure how it'll be with my 'reduced' hearing on the right side.

Since I play the electric bass, my mistakes are not be as noticeable compared to higher-pitched instruments!