How is your hearing?

[BeckyMax]

My AN is small, 5x7 mm.  I've chosen watch and wait because I feel that eventually I will lose my hearing anyway and it seems like the other alternatives would only speed this up, while also possibly having other side effects.  Maybe I've misinterpreted the info I've found.  I'm looking for real life data.  Here's what I would like to know.

1.  How long since your original diagnosis?
2.  What treatment did you chose and when?
3.  Has your hearing declined, either pre-treatment or post-treatment?
4.  Do you wear a hearing aid?

Becky

[BlueSky]

I have a small AN about the same size as yours.
1. Diagnosed May of this year.
2. I'm currently watch and wait
3. I had my hearing in the AN ear decrease on me once so far, but it came back when I took 10 days of steroids.
4. Nope, still regular hearing in both ears.

[skipg]

Hi Becky,
1.  How long since your original diagnosis?
       Original symptoms showed up in August of 2010
2.  What treatment did you chose and when?
        W&W due to only hearing loss and tinnitus. This was agreed upon by all the docs I consulted 
        with. Getting ready for treatments.
3.  Has your hearing declined, either pre-treatment or post-treatment?
          With the growth spurt the hearing is much worse. Very little useful hearing in rt ear, but still
          good for direction finding.
4.  Do you wear a hearing aid?
          I experimented with hearing aids but they did nothing for noise canceling and the
          amplification was muffled due to the AN. I did not continue to explore this route as I felt that
         each time the hearing got worse I would be changing hearing aids.
Skip

[PaulW]

1. Suspected AN early June 2010, diagnosed 4th July 2010
2. Single Fraction Cyberknife 27th July 2010
3. Hearing was declining quite quickly pre treatment. Then got worse post treatment, fluctuated for a few months, and then got better.
Had a bout of hearing loss in March and July 2012, had steroids, hearing got better.
4. No Hearing Aid, hearing still pretty good, considered normal hearing, but not as good as my good ear.

Study showing proactive Gamma Knife treatment provides better hearing outcomes than W&W for small tumours
http://www.ncbi.nlm.nih.gov/pubmed/21121792

Presentation from ANA Conference
http://www.anausa.org/index.php/medical-journal-articles/doc_view/120-gen-session-dr-kondziolka?tmpl=component&format=raw

[TJ]

Becky

I had CK 2 years ago.  When they found the AN it was about the same size as yours.  But it grew to 1.2 mm so we did the treatment.  CK is suppose to stop the growth.  So whatever pressure is on whatever nerve it will still be there.

To answer your questions:

Total time that I know I have had the AN about 4 years

There was some hearing loss before treatment

There has been a small amount of loss after treatment.

And yes I do where hearing aids which brings my hearing back to almost normal.

TJ

[HeidiC]

Becky,

As you can see in my little signature line below I had very little time between my diagnosis and treatment,  I actually knew I had the tumor about 6 months before the actual diagnosis because the Dr was just waiting for a second MRI to confirm.

Loosing your hearing isn't a given.  My tumor was small as well.  Part of why I went ahead and had surgery instead of watching and waiting was to try and save my hearing, instead of waiting for the tumor to grow and make my hearing worse.  My surgery was almost a year ago now and my hearing is still considered normal, though it did decline a bit from the surgery.  It won't decline anymore from the tumor or surgery-maybe from old age at some point LOL.

I do not wear a hearing aid and don't notice the loss for the most part.  I occasionally have trouble in directionality, in hearing clearly in crowded places, and hearing my 6 year old daughter who tends to not speak up and talks very softly.

Good Luck!
~Heidi

[rezski]

I was diagnosed in 2005 but probably  had symptoms for 10 years. I am in watch and wait with mid range hearing loss in both ears with the rt AN ear a little worse. If it ever grows I plan on cyberknife. My hearing probably declined a bit since then.  I was in a hearng conservation pogram at my former job as I worked in noise so I was tested ncea year.  I just got hearing aids paid for by DVR as my heaing loss was enough to make me "disabled" and as soon as I get used to them I will get extra help to find employment. As you can see in my sig the AN measures smaller than it used to.  Perhaps due to diferent scanners or I am "special" and it shrunk!
Caroline

[mattsmum]

i had radiosurgery a year after diagnosis for a 1.5cm tumour that was giving increasing symptoms. i had fluctuating hearing loss before treatment with complete recovery at times. since treatment i have had progressive hearing loss, and now have severe to profound high frequency loss. i do use a hearing aid most of the time as it helps with directionality and overall loudness and general sounds, it does not help speech discrimination much or in very noisy situations.
vikki

[It is what it is]

Hi,

I had a small AN diagnosed 5/12 and middle fossa surgery with House surgeons 8/12.  I really wanted to keep my hearing if at all possible and this gave me the best chance.  My hearing is the same as before and will only get worse now by normal aging.

Karen

[leapyrtwins]

Diagnosed mid-April 2007; AN was 1.5 cms

Opted for surgery (retrosigmoid approach) May 31, 2007; during surgery AN was discovered to be close to 3 cms.

Hearing was diminished but I had good word recognition when I was diagnosed.  Became SSD (single-side deaf) during surgery; AN was wrapped around my hearing nerve (something that can't be seen on a MRI) and in order to remove my entire AN my docs "sacrified" my hearing nerve.

I don't wear a conventional hearing aid; I have a BAHA.  I had the implant 3/4/2008 and absolutely love it!  It's not for everyone; but it's been a Godsend for me.

Jan