Author Topic: Please share your pre & post-treatment hearing loss stories  (Read 1365 times)

Jakey

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Please share your pre & post-treatment hearing loss stories
« on: November 29, 2021, 06:20:41 pm »
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

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #1 on: February 18, 2022, 03:09:56 pm »
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
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

lryan42

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #2 on: February 19, 2022, 12:36:18 pm »
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.
2017 - Mild vestibular symptoms. misdiagnosed. Normal hearing.
2018 - MRI w/o contrast: ambiguous. Normal hearing.
2019 - MRI /w contrast: 5mm x 4mm x 3mm AN.  Moderate hearing loss.
2020 - Completely SSD.
2022 - 6x4x4 mm with 3mm extension into cochlea and semicircular canals.  Surgery UCSD + CI.

donjehle

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #3 on: February 19, 2022, 08:07:31 pm »
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
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

PBFight4SB

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #4 on: March 26, 2022, 05:38:07 am »
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

donjehle

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #5 on: March 26, 2022, 11:58:10 am »
I am so sorry, PBFight4SB, for what your 19-year-old son is going through.  I can certainly understand why he would be depressed, and why all of you are hurting right now.

Some of the others in the ANA Community would know of the options available better than I do, but there may be some possibilities for your son with hearing implants.  I certainly would explore them with your neurosurgeon.  Some implants have certain requirements to function correctly, and your son's neurosurgeon should know which options would be a possibility for your son and which ones would not work for him.  I do know that some in the ANA Community have had successful hearing implants.  There are also some ANA videos which describe the implant options.  It might be helpful for you to take a look at them.

Best wishes for your son as he goes along this journey, and may God bless you as you journey alongside him!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

cmclane28

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #6 on: May 18, 2022, 07:56:43 am »
Before being diagnosed with my small left side vestibular schwannoma in July of 2021 I noticed my hearing was not as good as my right side. I had radiation therapy in August of 2021 and I noticed a month or so ago that the hearing in my left ear is now totally gone so it went pretty quickly. I only have tinnitus to listen to on that side now. I went back to my ENT this week and they referred me to someone to discuss some potential hearing aid options. I'm hoping that will help.

donjehle

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Re: Please share your pre & post-treatment hearing loss stories
« Reply #7 on: May 18, 2022, 06:15:15 pm »
Hi cmciane28!

I am so sorry that your hearing went so quickly!  I understand that it can sometimes be a result of radiation, but I'm surprised that your hearing loss came so fast.  I have not had my radiation yet, and I still lost my hearing -- so it can happen even without treatment.  At least it did for me, and I'm essentially deaf in my AN ear.  I wear a CROS hearing system in order to be able to hear.  Anything spoken on my left side is transmitted to my right ear.  There are other options as well, so I'm glad you are being referred to an audiologist or a specialist who can explain the different possibilities.  At least we have options to help us!

Please update us when you decide what option you are going to choose.

And best wishes in your continued recovery!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.
No treatment yet.

 


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