Author Topic: How to deal with anticipated hearing loss?  (Read 6653 times)

Machia2332

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How to deal with anticipated hearing loss?
« on: March 20, 2016, 06:29:56 pm »
Hi
I'm looking for some advice.  I have a 3.4cm AN and am scheduled for retrosigmoid removal during May (almost 2 months out)  I'm ok with the work that's needed with the exercises for balance and facial nerve complications, but I'm having trouble with the idea of losing the hearing in one ear.  (I estimate 60-70% of hearing is still OK on the affected side.)  I know that the hearing aid options are available, but I find the idea is just tough to sit with that I can hear out of that ear now, but I'll be giving that up to avoid the other facial nerve/balance issues down the road.  Does anyone have a way of looking at this situation that you would be willing to share?  My thought is that I would gradually lose more hearing in that ear over time even if I didn't have the surgery, but it's still tough to feel like I'm sacrificing the hearing that I have left in that ear...Please let me know your thoughts.

rupert

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Re: How to deal with anticipated hearing loss?
« Reply #1 on: March 20, 2016, 09:41:32 pm »
It is important to have a full hearing test done to see exactly where you stand.  I thought my hearing was ok when they diagnosed my AN however, found out in reality that hearing was shot.  Usually the higher frequency's go first but even if you can hear different tones,  if your word recognition is under 50-60% it's already gone.   Hearing loss is so gradual over time you just don't realize how bad it is until you have a complete hearing test.  As you suspect, one way or another your hearing will be gone in the affected ear.   Most people adjust just fine.  You sleep good when your laying on your good ear. ;)  There are devices that can help transfer sound from the affected side over to the good side.  You can research these options in the hearing section of the forum.  I have been single sided deaf for probably 8-10 years now and it's not much of a hindrance  only in crowded rooms with lots of people talking.  You learn where to stand and  how to be more in tune when people are talking to you.   I've never needed these devices and I'm doing fine. I do however have a special alarm clock with many different tones and volume and that works really well.  I hope everything works out good with your surgery. It's a big event.

arizonajack

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Re: How to deal with anticipated hearing loss?
« Reply #2 on: March 21, 2016, 02:07:43 pm »
Does anyone have a way of looking at this situation that you would be willing to share? 

I have been SSD in my AN ear since 2012 and I have a partial deficiency in my other ear. I wear hearing aids. You can read my story at the link below.

Here's how I look at it.

It's a ***** (female dog). It's inconvenient. It's sad. It's downright tragic. But like any other bad thing that happens in one's life, one does the best one can and adjusts to it and counts one's blessing that something worse didn't happen.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Echo

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Re: How to deal with anticipated hearing loss?
« Reply #3 on: March 21, 2016, 06:23:14 pm »
Jack has summed the situation up perfectly.  Know one wants to loose their hearing or deal with the difficulties facial paralysis can present.  Unfortunately these are the very real risks we face when dealing with an Acoustic Neuroma.  Many people have successful outcomes from treatment whether surgery or radiation, but for many others there can be a challenging recovery process.

If you read what people have written about their recovery post treatment, very few get by without some type of balance problem that does eventually correct itself.  I think those who have gone through facial paralysis, have had a tougher time than those who have only had to deal with hearing loss.  We all adapt to change differently, but as Jack has said, we do the best we can and count our blessings.

Cathie
« Last Edit: March 21, 2016, 06:25:24 pm by Echo »
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

areles

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Re: How to deal with anticipated hearing loss?
« Reply #4 on: March 21, 2016, 07:56:32 pm »
my heart goes out to you.  all i can share with you is how my son, i, and those who love him have looked at this:

you can have a tumor that insidiously grows until it takes nearly everything, including the hearing you're trying to preserve, or you can stop it in its tracks and sacrifice the hearing in that ear that you would likely eventually lose anyway, in order to potentially preserve your quality of life elsewhere.

it does indeed suck.  i'm not going to whitewash it.  music, my son's passion, no longer sounds the same to him.  noisy waiting rooms are a bear - and he hasn't even had to deal with restaurants yet!  it's unpleasant.

but you know what's interesting?  as my husband and i and our son started sharing this journey with others, we found out so many people we actually know - up close and personal - are SSD without us having ever known it before.  one of my son's members (he teaches swim at the y).  the mother of one of my dearest friends (she was just telling me at a family party two days ago how she's been SSD since childhood, and i never knew!); she had the opportunity to go to house years ago and decided against it, because she was already used to things and didn't want to take any risks.  so there's two.  my husband's boss' wife has apparently been SSD for 15 years.  and, most startling of all, my husband's late aunt.  he's known her his whole life, and i'd known her for 15 years prior to her passing, and neither of us realized until my mother in law shared it with us.

there is life after SSD.  my son has only been dealing with it for four weeks, and already you wouldn't really know the difference, and even he says he is getting used to it.  he's more comfortable now with saying, 'hey, uh, i can't hear you!' than he was in the early days, when he'd pretend he could, his face turned into a grimace.  now he's just like, 'yeah, this is a thing.'  i took him for his first post-op haircut today, and his barber said something to his left, and he just casually said, 'i'm sorry, can you speak a little louder?  i had brain surgery and i'm deaf in that ear,' and the barber was like, 'oh!  my bad, so sorry!' and repeated himself.  it wasn't a thing.  (also, he sleeps so well now!  lays on his good ear and he reports that it's blissfully silent!)

i won't tell you it's easy.  what i will tell you is that a mere four weeks out, from a distance, and likewise finding out how many people close to us have the same issue (for different reasons), it doesn't have to be the very worst thing ever.

my heart does go out to you, again.  facing SSD was the hardest part for my son, scarier than anything else, even the facial paralysis.  but he has already begun to grow accustomed, and he seems satisfied that at least he can now say "i HAD a brain tumor" in past tense.
« Last Edit: March 21, 2016, 08:00:58 pm by areles »
22 y/o son:

2.8cm dx 12/31/15
translab (10 hours) at house clinic 2/23/16 - dr schwartz, dr miller
surgical repair of csf leak 2/27/16 - dr miller, dr chen
as of 2/28/16, still in hospital, with tentative release scheduled for 3/1/16
{indeed sprung 10:15a 3/1/16}

mcrue

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Re: How to deal with anticipated hearing loss?
« Reply #5 on: March 22, 2016, 08:53:27 am »
Does anyone have a way of looking at this situation that you would be willing to share? 

I have been SSD in my AN ear since 2012 and I have a partial deficiency in my other ear. I wear hearing aids. You can read my story at the link below.

Here's how I look at it.

It's a ***** (female dog). It's inconvenient. It's sad. It's downright tragic. But like any other bad thing that happens in one's life, one does the best one can and adjusts to it and counts one's blessing that something worse didn't happen.

Well said. Plus, we have to put things in perspective.
For example, it could have been terminal cancer instead of an AN diagnosis, or you could have been a quad in a car accident, or a victim of so many other horrible things.
Yes ,we have to acknowledge the loss, but the future can be very promising. Some people don't even bother with hearing aids as they may not receive a substantial benefit, while others can't do without them. Everyone is different.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

GP9

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Re: How to deal with anticipated hearing loss?
« Reply #6 on: April 03, 2016, 12:25:44 am »
At first noisy situations would make it impossible for me to understand people. This situation has lessened, as I adapted. There are still some tough hearing situations.

Most of my friends and business associates know of my problem. At a meeting, or meal I'm usually given preference of seating. This provides the best location where I can participate in the conversation.

My son is 9. Sometimes he starts talking to me when he's standing on my bad side. I have to keep reminding him that I don't hear him, and he needs to come over to the other side. One other drawback is sometimes in a store. The other day the checkout line was slow. A lady opened another line overt word my bad side. I didn't hear her say to come over, but the person behind me must have thought I was daydreaming, and got my attention.

The biggest drawback is not knowing where sound is coming from. I'm famous for setting down my cellphone and forgetting where it was left. When it rings, it's hard to pinpoint where the ringing is coming from. Recently a friend yelled out to me from across a parking lot. I heard my name, but couldn't tell where it was from because he was sitting in the car.

caryawilson

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Re: How to deal with anticipated hearing loss?
« Reply #7 on: April 19, 2016, 07:57:06 am »
Little different perspective.  I remember when I first learned about my AN and I was struggling with the prospect of losing my hearing.  It turns out this is trivial, compared to other potential issues.  My tumor was 4.5 cm, and I"m lucking NOT to be on a feeding tube and I'm doing AMAZING with SSD and resection of my facial nerve. 

I have NO problem with SSD and is the least of my issues.  I tried several hearing aids such as CROS and bone implants.  I didn't feel that the hearing aids are quite where they need to be.  They tend to amplify NON speech sounds such as rain, crinkling of bags, background noise, etc.  Completely annoying. 

I barely notice my SSD.  However, there are situations that are impossible to fix.  If someone is directly next to me on my deaf ear, such as walking, standing in line, or sitting at a table.  Really tough or impossible to hear.  I adjust my life to sit at a table or walk with people so they are on my hearing side.  Takes practice, but NOT a big deal.

Also, sleeping is amazing.  I put my hearing ear on the pillow and I can sleep completely silent.  So that's one benefit.

I know it's hard to come to grips.  Honestly, it's NO big deal.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

caryawilson

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Re: How to deal with anticipated hearing loss?
« Reply #8 on: April 20, 2016, 10:45:55 am »
Quick clarification. When I said I trialed the bone implants, of course I trialed the band demo device of the bone implant. As I described before, my main complaint was that the hearing aids amplified voice AND noise. It was difficult. They obviously will help when it's quiet and someone is on your deaf side but I didn't notice a major improvement in other situations. We have the technology to filter the noise from speech but this may difficult to get in a small form factor.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Boot Strap

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Re: How to deal with anticipated hearing loss?
« Reply #9 on: September 10, 2016, 02:38:53 pm »
My first post, I hope I'm doing this correct. After being  disharged from hospital while beginning recovery at home I remember waking up one morning and coming to grips with the fact I can't hear anything out of my affected side and in my case severe tinnitus. It was overwhelming at the time but as others have stated it's something that us lucky folks just have to deal with. I've always said there is always someone that has it worse so it can't be that bad. I've used my condition to my advantage many times if let's say you're at a bar and some joker is trying to talk you're ear off once you tell them you're story you will be left alone lol. Life gave us lemons so we have to sweeten it up some but remember WE HAVE LIFE.
4.5cm AN removed trans lab by Dr. Leonetti and Dr. Anderson at Loyola university in Maywood (Chicago) Il on 4/16/96. 9.5 hour surgery and one heck of recovery. Diagnosed while in military at 19 years of age. Complete hearing loss on affected side and severe tinnitus. Life is good.

researcher

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Re: How to deal with anticipated hearing loss?
« Reply #10 on: September 10, 2016, 08:22:17 pm »
I like to sleep with the tv on at night since it helps mask my tinnitus.

When I feel like sleeping on my side with the deaf ear up, I use this product. Sangean PS-300 Pillow Speaker with In-line Volume Control and Amplifier sound.

I slip it underneath my pillow and the sound goes to my "good"ear. It's great. So far I haven't tried getting a hearing aid for my SSD.

ANGuy

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Re: How to deal with anticipated hearing loss?
« Reply #11 on: September 11, 2016, 09:25:30 am »
My first post, I hope I'm doing this correct. After being  disharged from hospital while beginning recovery at home I remember waking up one morning and coming to grips with the fact I can't hear anything out of my affected side and in my case severe tinnitus. It was overwhelming at the time but as others have stated it's something that us lucky folks just have to deal with. I've always said there is always someone that has it worse so it can't be that bad. I've used my condition to my advantage many times if let's say you're at a bar and some joker is trying to talk you're ear off once you tell them you're story you will be left alone lol. Life gave us lemons so we have to sweeten it up some but remember WE HAVE LIFE.

This.  Lemonade from lemons, yes are doing it correctly.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

leapyrtwins

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Re: How to deal with anticipated hearing loss?
« Reply #12 on: December 29, 2016, 12:07:29 pm »
Very interesting question and something I never thought about.

I just dealt with my hearing loss post op. 

Although some people told me that I'd "adapt" to being single-sided deafness I got there "kicking and screaming".  In other words, I was NOT a happy camper.

I opted for a Cochlear BAHA implant 9 months post op and couldn't be happier with my decision.  I've had my BAHA since 2008 and wouldn't trade it for the world.

So, for those unhappy with their hearing loss, I highly recommend doing something about it.  In my opinion, it will improve the quality of your life.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways