General Category > Hearing Issues

Please share your pre & post-treatment hearing loss stories

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Jakey:
Hi, I'm a 56yo male 3.5 years out from having fractionated GK treatment at Columbia University in the Bronx by Drs. Sisti & Wang.  My AN was only 3mm, but I was losing my right ear hearing rapidly, so I had the GK in order to save what was left.  I have since gone almost deaf in my right ear, but I still think it was the right decision, as I was losing my hearing anyway, and IMO I had nothing to lose by having it done then.  Sisti felt confident we would be able to save my hearing at 50% or so, but in hindsight I suspect he was just telling me what I wanted to hear so I would have the procedure done.  At the time I believe it was the smallest AN he had every operated on, and he wanted the bragging rights. 

With that, I'm interested in hearing from others about your hearing loss both before treatment & after.  My surgery was a success, I'm still at 3mm after almost four years, but I swear over the past year or so, my right ear hearing has gotten ever so slightly better. 

Has anyone else experienced hearing IMPROVEMENT in their "bad" ear after GK or surgery?

I'm hopeful that I might regain some functional hearing in my right ear.  I know it sounds crazy, but maybe "train" it to hear better?   I experiment playing Spotify with headphones, switching 100% of the sound to my bad ear, and though I'm careful not to make it too loud, I can make out the rhythm of some songs, and sometimes even a word or two (but that may be only because I know the song). 

Thanks all, please share your stories and LMK if I'm crazy hoping my hearing might improve on its own, with time.

donjehle:
Hi Jakey,

My story is similar, but different than yours.  On Nov. 5, I suddenly had some hearing loss and tinnitus in my left ear.  I say my primary care physician as soon as I could and she put me on a round of prednisone right away.  She also referred me to an ENT doctor.  The ENT doctor had an audiologist do an audiogram, and I was informed that while I had some hearing loss, the good news is that a hearing aid would work well for me.  The ENT doctor said that because my AN was so small -- about the same size as yours was -- that I should take the watch and wait approach, even though I lost some hearing, had tinnitus, and was having balance issues which made me walk with a cane.  I was told I should wait six months, have another MRI and see how much my AN had grown.  In the meantime, the ENT doctor put me on another round of prednisone, even stronger than my first round.

When the second round of prednisone finished, and I had another audiogram done, my hearing had become progressively worse to the point where now the audiologist said a hearing aid would not do me any good.  I lost what hearing I had while in the watch and wait mode.

If I had to do it over again, knowing what I know now, I would have wanted to do what you did and had GammaKnife done.  At least then I would have had a possibility of keeping my hearing at a level where I could have used a hearing aid.  But, by waiting and doing nothing, I am nearly completely deaf in my ear.  And having two separate rounds of prednisone did not help me keep my hearing, unfortunately.

I have no hope that I will ever regain functional hearing in my bad ear.  It was irreparably damaged by my AN during my watch and wait period.  No amount of training will bring it back because the acoustic nerve was damaged beyond repair.  On the other hand, my balance is getting better with vestibular therapy.  I highly recommend that for those of us with equilibrium issues.  But I have not found anything that works on improving an ear once it has lost functional hearing.  However, if you have success in training yours, please post it so that we know!

Best wishes in your future!
Don

lryan42:
Mine is in an unusual place in the vestibule.   My hearing loss came relatively late in the symptom progression.  Hearing went from perfect to a "high frequency notch" in early 2018 to totally gone by mid 2019.

Having mine removed next week and a CI installed.  I'll keep y'all posted.

donjehle:
Wow!  Thank you for sharing your story, Iryan42.  It just goes to show that those of us with small ANs can develop SSD while watching and waiting.

I am glad that you are finally having yours removed next week and having a CI installed.  I will be very interested in hearing how that goes.

Please do keep us updated with your post afterwards.

Best wishes for your surgery!
Don

PBFight4SB:
My kid has bilateral vestibular schwannomma. Had left side hearing before first surgery. Reduced to non functional hearing after first surgery, 3rd surgery happened on same side and he is now completely deaf.

Is there no solution at all? Is there nothing like "hearing implant" from someone? He turned 19 recently and undergoing lot of depression and we, as parents, are full of pain

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