Author Topic: What is it like?  (Read 5545 times)

Twindy

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What is it like?
« on: February 10, 2012, 07:35:18 am »
Will you share with me what it feels like to be deaf in one ear?  I keep closing my left ear to try to get a feel for it, but I'm sure it's nothing like that!  Just looking for personal experiences.

CHD63

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Re: What is it like?
« Reply #1 on: February 10, 2012, 08:14:41 am »
Try listening to your iPod or music system with only one earbud (or one channel speaker only).  Being deaf in one ear also means losing being able to tell the location of a sound.  If someone tries to talk to me on my deaf side (unless I have my Ponto on), I cannot understand them.

I will say that having a bone-anchored hearing device helps tremendously in a conversation and being able to hear my husband when he is driving the car.  For music listening, I bought a single earbud (dual channel) ear plug so at least I have both channels of sound, even though they are both fed to my only hearing ear.  There is an adapter for the Ponto to be able to plug it in to it for dual sound, but I did not get it because it would be essentially the same as what I have.

Hope that helps.  Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Archer

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Re: What is it like?
« Reply #2 on: February 10, 2012, 08:50:08 am »
I've been SSD for 10 years and it just seems normal to me now.  At first I couldn't stand the silence if I slept on my good ear.  Now I prefer sleeping on my good ear because it is so quiet I sleep better.  As Clarice says, direction of sounds is very difficult to determine.  I usually stop when I hear my name called a turn until I see someone looking my way in order to tell who is trying to get my attention.  I always try to arrive at a meeting or situation early so I can choose where to sit so I can hear best.  I try to pick my seat first when we go to a restaurant for the same reason.  You learn to adapt to situations over time and it becomes a new normal.

I never looked into hearing devices like the BAHA in order hear sounds from the SSD side.  I wish I had now.  Seems I have missed a lot this past 10 years.  I'll be investigating them now but unsure if they will do much good as I am dealing with another AN on the other side now. 

I assume you are anticipating being SSD from your question.  Please investigate all possible hearing options/aids you can so you get the best quality of life that you can.  You'll regret it if you don't.

Good luck and God Bless.

cindyj

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Re: What is it like?
« Reply #3 on: February 10, 2012, 09:48:29 am »
Though it was very strange those initial few days post op, it is not as bad as I was imagining it would be prior to surgery (kept thinking I wouldn't be able to enjoy music or the movies - but I still do). I do not have a hearing device and as of this moment, don't think I'll get one...could always change my mind, however :D  You do adapt, one must, right?  Around my house (others here as well), the inability to know where a sound is coming from has become a humorous thing - my husband continues to love to play games at my "expense"...know it's not so funny to some, but we do have some good laughs about it. 

The most annoying thing to me about SSD, is not what I Don't hear, but what I Do hear - all that noise in the head (tinnitus), but again, one adapts :)  For the most part, I don't "hear" it when I'm going about living life to its fullest! 

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Silver Sonnet

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Re: What is it like?
« Reply #4 on: February 10, 2012, 11:27:33 am »
As the others have mentioned, the ability to tell where a sound is coming from has been the most challenging effect of being SSD for me.  I'm an English professor, and when we're having class discussion, I have to ask my students to raise their hands when they talk so I can tell where the speaker is.  This is especially important for me since I have reduced hearing in the "good ear" and do a good bit of lip reading. 

Planning where to sit is also a part of my life now, as is the ongoing attempt to train  my hubby to walk on my left side so I can hear him after years of walking on my right side.  Driving is a challenge, too, because if I hear a horn blowing, a siren, or tires screeching, I can't tell which direction they are coming from, so I have to be extra cautious and ask--in advance--anyone riding with me to help me in such situation.

Early on, the loss of hearing is likely to cause some balance problems, too, especially if your hearing is normal or near normal now.  I had to tell my boss and my students about the balance problems so they would not think I was teaching drunk!

Jim Scott

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Re: What is it like?
« Reply #5 on: February 10, 2012, 02:39:36 pm »
Twindy ~

I concur with what the previous four posters have related.  My hearing in the AN-affected ear went away slowly and I slowly adjusted (I had no idea a tumor was the cause).  Today, almost a decade after my hearing was lost and almost 6 years post-op/radiation, I've adapted quite well.  I do miss hearing some things that are said to me but rarely is this a big problem.  At a dinner table, I can hear everyone just fine.  Noisy restaurants are a challenge but not an insurmountable one.  Directionality is an ongoing problem but not a serious one.  Like Cindy, I still enjoy music, listen to the radio, etc.  Overall, I find being SSD an impediment, like having a slight limp, but not a handicap. 

However, if you go into surgery with near-normal, bilateral hearing and come out SSD, it will be a big adjustment, for sure.  This is why many AN patients make arraignments to have a BAHA abutment installed during or shortly after their surgery.  They simply find being SSD too difficult - and I can certainly understand that.  My s-l-o-w hearing loss allowed me to adjust - over years, so when my hearing was finally lost in the affected ear, I could handle it.  Even now, many folks I'm acquainted with have no idea I'm SSD.  I rarely mention it and enough of my friends do know about it (it's not a big secret) and try to be sure to talk on my 'good' (hearing) side that I have no need to constantly tell everyone I meet that I'm SSD.  Even on my deaf side, I can hear my alarm clock go off every morning.  It's quite situational but if I thought my SSD was becoming a quality of life issue, I would look into getting a BAHA...and I may do so...some day.

You may want to go the BAHA route but if or until you do, I can assure you that being SSD isn't the end of the world, by any means. 

Jim 
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

mk

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Re: What is it like?
« Reply #6 on: February 10, 2012, 06:02:39 pm »
Twindy,

I will agree with Jim that it is much easier when hearing is lost gradually. I have been in both situations: When I was diagnosed, I had perfect hearing. During the following 2 years I suffered a couple of episodes of sudden hearing loss, which happened pretty much overnight. This was quite awful, I couldn't tell where sound was coming from, everything (even my own voice) sounded weird, I heard distorted sounds etc. My hearing did bounce back with the aid of steroids, only to gradually start diminishing over the course of many months, to the point that I had virtually no word recognition and almost no hearing. I then had surgery, and I ended up completely SSD, but at this point this didn't make any difference. I adjusted right away, it actually felt much better than the distorted hearing. I can function pretty normally, I teach large university classes with no problem (of course, like everyone else said I choose where I seat carefully, and if my children whisper in my ear I can't hear them). Oh, and sleeping in a noisy house is very easy - just sleep on the good ear. Given that I haven't had any problem being SSD I haven't considered a hearing aid. I am convinced that the transition was easy because of the adjustment as hearing was diminished gradually.

Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.

MDemisay

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Re: What is it like?
« Reply #7 on: February 26, 2012, 05:20:40 pm »
Twindy,

I have been half and half deaf for about 8 years now. Hearing 100% on right side only.

 So when the TV is on loudly I often cannot hear what is being said in the next room on my left, I don't actually enjoy going to plays anymore because I can hear what is going on several rows away before the play starts and have been uncomfortable with both near and far sounds in bars and parties where many people are talking at once. This makes me most irritable when having to deal with these situations.

 Frequently, I will adjust my surroundings accordingly. It is annoying when I don't. My wife has gotten used to it. I have noticed when driving, I still drive, I have noticed that when backing up and my wife is talking to me in the front seat, I will ask her to not talk to me. As I cannot concentrate on her conversation. This didn't happen before my 2004 AN surgery.

I also notice that while listening to the white noise of the dishwasher for instance, I cannot listen to the TV.


I suppose one learns to adapt! One of the benefits to hearing on one side is not being woken up from sound sleep when there are sudden noises at night when sleeping on the good ear!

I suppose I could wear a BAHA hearing device or bone conduction but I have gotten used to living this way.

Hope this helps you with your choice. Good luck.

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

leapyrtwins

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Re: What is it like?
« Reply #8 on: March 12, 2012, 08:35:07 am »
Hard to describe.

I have absolute stone silence in my deaf ear - but I know some don't experience this because they have tinnitus (noise is actually in their head, but seems like it's in their ear).

Some people adapt extremely well to being SSD.  I went there kicking and screaming (so to speak).  Absolutely hated every aspect of it  >:(

I opted for a BAHA implant and it was the solution for me. 

I'm thrilled with my BAHA.

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