ANA Discussion Forum
General Category => AN Issues => Topic started by: Jwh on April 12, 2011, 06:55:00 pm
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Ok....How many of you who have single sided deafness can tell what direction a sound/noise is coming from? I CaN't! It drives me crazy I run in the opposite direction and basically run in circles looking for the phone ringing or the person calling for me...GRRRR. I'll never get use to that.
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You learn to turn slowly around and look. My former boss and one of my board members have been SSD since childhood and are in their 60s and 50s...they still have a problem.
Embrace the confusion...
-Tod
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Bhahahah...Tod. Love that. Can I use it??? I am a police officer and you can imagine the concern my bosses have. I can not locate sound direction, unless it's right beside my good ear, then it doesn't matter because it's pretty darn obvious ain't it?
We do learn to look around slowly. Don't try using the panic alarm in your car to find it (been there, looked pretty silly when the car was one row over hidden by an SUV) mark down the pole and row number, good luck with the cordless phone finder, you might get to the right room, but unless it's dark and the phone lights up, you're still lifting pillows and looking under furniture..I could go on, but yes...that is our sad reality.
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I'm still holding out hope that I can develop some directionality with my BAHA. There is a different "color" to the sound, and if I can learn to pick up on that, I think it will help.
Oh, and use away....
-Tod
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Sometimes it is quite funny to play hide and seek with the kids ;)
Seriously, other times it is quite frustrating/dangerous. A couple of months ago I was inches (centimeters in the metric system) from getting run over by a motorcycle because I looked in the wrong direction due to SSD. Pretty scary.
Kenneth
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Yes, I can totally relate to you Jwh! I have to rely on my kids alot to tell me what a noise is or where it came from. The tv will be on and I will hear a phone and I'll say, "Is that our phone?" Or my cell will be ringing and I will have no idea where it is... to find out it was right next to me! One night I was laying in bed and I heard a noise and of course could not tell what it was or where it was coming from. It was my kids weekend to go to their Dad's so I was scared! I finally had to get up and see what it was....clothes in the dryer...ugh! Sirens when I'm driving...never know what direction they are coming from. Does anyone with a BAHA notice it helping at all with knowing where sound is coming from? I have been considering it...still not sure but we'll see.
God Bless,
Laura Lynn
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Like Tod, I am hoping that my brain will eventually adjust to differentiating whether the input is from the BAHA processor or my good ear, which would give a degree of directionality, I would think. I will not have mine for several months so Tod or others will have to tell us if this indeed happened to them.
Clarice
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Laura Lynn,
I attended an AN symposium a couple of years ago at which a doctor said that he makes sure his patients know two things before they "sign up" to get a BAHA: (1) their level of tinnitus will not be changed (i.e., a BAHA will neither make tinnitus "better" nor "worse") and (2) the BAHA will not restore directionality (he subscribed to the theory that the brain permanently loses its ability to distinguish directionality shortly -- perhaps in as little time as a few weeks -- after the onset of single-side deafness). A couple of BAHA wearers on this forum have felt that they've regained some measure of directionality with their BAHAs, so perhaps they'll comment here. But I imagine they would agree that it's not something you should confidently assume will happen.
Catherine (JerseyGirl2)
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I *think* and this is very early on, any ability to regain any level of directionality is going to depend on the quality of the sound, the user's ability to differentiate and recognize sound coming through the processor, and the volume settings of the processor.
I think it will also take a fair amount of intentionality on the part of the user to find distinctions. I'm likely to end up being very wrong, but we'll see.
As far as BAHA not affecting levels of tinnitus, my doc thinks otherwise and I am part of a study group for that issue. We'll see what happens. however, i did write in large letters on the surveys "ASKING ME TO RESPOND TO A QUESTIONNAIRE ON TINNITUS JUST MAKES IT WORSE."
But, tinnitus does drown out the voices. ;-)
-Tod
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I think the longer you have SSD, the more your brain tries to compensate for directionality with the small clues that your one sided hearing gives you. For example, if you shut your eyes and turn around in a room, you can tell what direction the TV is in, since it's louder when you face that direction. There are also subtle differences in the treble sounds vs. bass sounds. If the sound comes from the non-hearing side, the higher frequencies seem to be absorbed more than the bass frequencies by having your head in the way. It's not like true stereo hearing, but it helps. With that said, I find that fairly often I can be fooled into thinking I know what general direction some sound comes from, and be completely wrong. ;)
Regards,
Rob
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i am not SSD - i have some hearing left; but not enought to give me directionality. when i hear my hubby's voice and say 'where are you' cos i cant tell... he helpfully says 'here'!! grrr.
vikki
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Sniffle....sniffle....Yup that is me crying from frustration.
Yes my husband will call me from another part of the house and I get frustrated with him. I'm like where are you and he says right here! Well gee thanks that helps a lot! I've heard my kids calling for me and I go running behind the couch and they are clearly across the other side of the run. I think they actually get a kick out of that. The phone oh forget it...If I don't have my kids around I can never find it.
I almost always look the opposite way of the correct direction of the noise. Plus my good ear has tinnitus and is clicking (mostly when I'm tense). Oh wait yes I have otorsclerosis in it. Yeah!
Sorry for the self pity talk but I'm having one of those weeks!!!
Thanks for all of your responses. It's soooo nice to have a forum where people actually understand what you're talking about! It makes things better :)
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Ah yes, the SSD spin. I know it well.
I have done much less spinning since I had the BAHA implant, although docs and audiologists will tell you that BAHAs rarely help with directionality. I am one who thinks I have gained directionality, but it may all be in my mind; wishful thinking ::)
As for tinnitus, the BAHA has absolutely no effect on it. A BAHA implant will not increase, decrease, stop tinnitus or cause it to start.
Jan
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Did some research on SSD last night. It's a true disability to many people suffer from. People laugh at me when I say it's a disability but they have no clue what we go through on a daily basis. Loud environments are nearly impossible for me. I always have to angle my head with the good ear facing conversation. I miss tons though.
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Have you read this essay?
http://tribalvillages.org/deaf-essays/single-sided-deafness.html
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Wow, that guy nailed it!! Great article on SSD. Thanks for sharing this.
Sue in Vancouver USA
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Thanks Ken,
I just read it. I can totally relate to what that person goes through in a day. It's amazing how SSD effects practically everything we do.
Laura Lynn
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Thanks for sharing the article, Ken. Wow -- I couldn't agree more!
Catherine (JerseyGirl 2)
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Ken .....
Excellent essay. Saving the link to send to selected friends who would appreciate the non-threatening description of the situation for SSD people. Thanks.
Clarice
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Kenneth ~
I just finished reading the essay on being SSD and thought it was completely accurate. I could have written it myself, except that, frankly,I don't find being SSD quite as frustrating as the author. However, I didn't become SSD until my late 50's. I'm grateful for having excellent bilateral hearing for most of my life, unlike Ray Gillies-Jones (the author of the SSD article). I usually describe my SSD as being an impediment, not a handicap. However, the SSD experience is always going to be subjective, even though people who are SSD share common problems. How we deal with them (partially controlled by our lifestyle) will always be a factor in how we view our SSD. Judging from previous posts, many members found the SSD article informative, as did I. Thanks for posting it.
Jim
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Ken,
Thanks so much for posting that article. I just put it on Facebook so people can understand what my day feels like. I also made my husband read it...It's an eye opener!
Thanks!
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thanks for the article and the website - wow, that is exactly how i feel!!!
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Hi
Have no clue what direction noise is coming from. Have learned to live in state of daze and confusion. Have no tinnittus since surgery - the only plus factor.
Ann x
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Yes, I know how you feel. It never gets any better! Transear was a waste of money and time. But most people approach me face to face..it took a long time to get people to do that:)
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Hah, seems like I remember once reading a topic on here that was more on the 'funny' side of SSD. It was people just sharing some stories that may 'sound' a bit funny, but where only those of us in the same condition would understand. Anyone else remember those posts??
I happen to hear a woodpecker going crazy the other day. So I stepped outside to try and see where it was coming from. I swear I was walking around like a lost alien looking up for my home in the sky, but couldn't figure it out. I was walking round & round on our property. I could hear it, but I think it was up high in a tree and that made it even worse for me. A week before that my dog took off. I could here his tags clanging around in the woods, somewhere, but couldn't figure out where. Didn't even have a clue which way to head to start looking for him. Luckily my hubby was pulling in and was able to find the dog right away (I honestly was looking in the wrong direction) Grr.
NOW, as for tinnitus & the BAHA. Well, I posted on facebook about a year ago and got replies where for a few it DID help!! I asked after being told BY a Cochlear Rep (when I was trying to get a BAHA, but insurance keeps denying) that YES a few have commented that a BAHA does help with their tinnitus. Also, like said in a post above there is currently a new study for those in regards to tinnitus and BAHA use. I wish I could speak from experience of my own, but no luck (darn insurance!!)
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Went to a bday party last night. Missed tons of conversation. Probably said "what" or "pardon" over a dozen times. Such the life we live.
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only a dozen - that would be a result!
best wishes,
vikki
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Figuring out what direction noise comes from is so frustrating but also trying to figure out in the first few seconds what the noise is, sometimes I get a moment of fear with this, guess I am still getting used to it.
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I had SSD for about 6 months to 1 year prior to discovering the AN. I got a BP-100 (upgraded to the Baha 3, which is basically a BP100 with bigger buttons and a plastic flap over the microphones and the battery) in February of 2010 and I have found that I can tell the difference between the regular ear (left) and the right side by catching the slight time delay in the sound. I will say that the BAHA is pretty bad in noisy situations, since it will grab the sound that is loudest and transmit that into the ear (I have also noticed in concerts and bars that the BAHA will clip the sounds when I close my left ear to hear out of the right ear). It is designed to emphasize voice over all else, so some musical notes get lost (and some cause it to go into a squeal for a second).
Jim
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I am still fairly new with my BAHA - I have only had it for a month so I am still adjusting. I am currently finding that my direction is really off. The BAHA gives you almost a microphone sound and I have no clue where it is coming from. And since I can hear more with the BAHA sometimes it can be overwhelming. I am adjusting but I still think the ability to hear will out weight the need for direction. I think that will be something that I just get used to over time.
;)
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I am a Baha wearer who definitely feels my directionality is better when I wear my Baha. I also feel that because of this my balance when walking is also improved when wearing the Baha. :)
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You made me laugh cause I sometimes feel like a dog chasing my tail. I have made it a game to use my good ear as my compass and direction finder. THere are many more worse things in life to take this so seriously. Yes it is frustrating but I just shrug my shoulders and move on. I guess I am glad I have one good ear. Tweety
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exactly, cant tell orientation of sound cause we lost one radar unit. also in crowded venues i can hear across the room better then i can my table talking directly at me. brain only has one side to absorb it all now. which by the way makes the brain work harder too tiring more.
BAHA is one way to solve part of this, so is transear if you can find them, and there is the old Criss Cross ear devices too. and a new one just FDA approved called "sound-byte" where the transmitter is in a retainer device in your mouth and goes to an ear piece.
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I found this thread very interesting. Thanks Kenneth for the SSD essay. I try to be as normal as possible but some days are a challenge and I embarrass easily. I find myself avoiding a lot and that's sad. I lost my job as Retail Assistant manager just before I found out about my AN and being that I am no spring chicken it has been hard for me to apply for jobs in the retail situation. They are not ideal for SSD, not only direction but dizziness and Wonky head feeling.
I do have a kinda funny story though. I was talking on the phone one day to a friend and heard a dog barking, she doesn't own a dog so I ask her about it. It was my own dog in my own house barking Weird ::)
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Hello, all!
I'm fairly new to SSD as I just had my translab surgery on Thursday, April 28th, but I can identify with the frustration and "humor" of it all! The directionality is driving me crazy...with a 2 and 7 year old, sometimes figuring out where the "Momma" is coming from is maddening! The other night a succession of unfamiliar sounds (a toy noise, a tone on my hubby's cell phone, and something on the tv) caused a (now) funny blowup from me. I just "freaked out" (in my 7 year old's opinion) and yelled "What is that noise, and where is it coming from?!?!?!" It's funny now, but that night, I'd just about had it with having to work so hard to locate and identify sounds. I know I'll get used to it...hasn't even been 2 weeks, but it IS maddening! I'm so thankful for this community!!!
Amanda
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I love how it's been 10 months for me now and my husband still tries to whisper in my deaf ear. I make a funny face at him but he can't see it cuz my left side still has some paralysis : )
Does anyone get a weird feeling in your bad ear? Sometimes a certain tone (usually my husband singing or being goofy loud) will set off kind of a vibration in my head (best description I can think of; it feels like I would imagine a tuning fork to feel when it has been hit against something). If I get bumped or move the wrong way I get the same thing. Sometimes it is painful and usually gives a new, louder type of ringing.
Then at other times I get a sharp pain in my ear, it feels like an ear infection but it's not.
I did have a CSF leak but the doctor said when he went back in he was able to avoid the drum and leave my ear insides in tact.
Any thoughts?
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I love how it's been 10 months for me now and my husband still tries to whisper in my deaf ear. I make a funny face at him but he can't see it cuz my left side still has some paralysis : )
Does anyone get a weird feeling in your bad ear? Sometimes a certain tone (usually my husband singing or being goofy loud) will set off kind of a vibration in my head (best description I can think of; it feels like I would imagine a tuning fork to feel when it has been hit against something). If I get bumped or move the wrong way I get the same thing. Sometimes it is painful and usually gives a new, louder type of ringing.
Then at other times I get a sharp pain in my ear, it feels like an ear infection but it's not.
I did have a CSF leak but the doctor said when he went back in he was able to avoid the drum and leave my ear insides in tact.
Any thoughts?
Yes, sometimes. I think it's scar tissue. I truly don't think my tumour is growing back but every now and then I get 'reminders' of what happened not so long ago. I had my surgery just over 10 months ago too.
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Teaching in a classroom with 20-30 kids is exhausting with SSD sometimes - even when they know the situation. One morning a parent walked in the classroom while I was looking for something on my desk. I didn't even know she was right beside me trying to talk to me. By the time I noticed her, she had an incredulous look on her face. ??? :o ??? Another time two of my boys were working together on the floor in the same spot. They asked me a question while I was reaching over my desk for something. I kept looking out over the room to see who was calling me - never seeing anyone. Finally it dawned on me that it must be coming from my right. Once again that incredulous look from others says it all. ::)
On another note - I've been having pain from my bad ear this week too. It is odd because it is an intermittent pain coming from the temple area above the ear. Plus there are sensitive spots in the outer ear that trigger the pain.
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Does anyone get a weird feeling in your bad ear? Sometimes a certain tone (usually my husband singing or being goofy loud) will set off kind of a vibration in my head (best description I can think of; it feels like I would imagine a tuning fork to feel when it has been hit against something). If I get bumped or move the wrong way I get the same thing. Sometimes it is painful and usually gives a new, louder type of ringing.
Then at other times I get a sharp pain in my ear, it feels like an ear infection but it's not.
I can definitely relate to the noises in the deaf ear. Some are rather wierd like an electical buzz or bee!
When hubby persists in talking to me on that side, I turn off my good ear as well and ignore him. LOL He gets it in the end ;D
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Now that I am fully SSD, I can appreciate this thread all the more. I had 20% hearing pre-surgery, but with very loud tinnitus. Now I have NO hearing and still very loud tinnitus ...... so it really does not seem all that much different. The tinnitus masks any now impossible input of sound anyway. Wonder what will happen when the BAHA processor is attached ......
Husband still adjusting to the fact I simply cannot hear what he is trying to tell me when on my AN side. We do this little "dance" when deciding how to sit in waiting rooms/restaurants ...... sort of like, who's on first, etc.
You should have seen David, Nancy, Lainie, and I jockeying for best placement of hearing positions last Saturday! Pretty funny!
Clarice
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Clarice, I call it the 'SSD Shuffle' ;) Its been 18 months for me now and seems like I still have to do the shuffle with my family members...usually when walking somewhere.
Isn't it an odd sensation having SSD, BUT STILL having tinnitus???? So many people don't seem to believe me how bad my tinnitus can be on that side. They are like, ?what??, I thought you were deaf on that side. I honestly don't completely get it, since our nerves to the brain are the dead part (RIGHT?)
Denise (MI)
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Denise, I just tell them that I hear the tinnitus in my head. That helps a lot. And we've adopted this phrase in our house.
"I can't understand what you're saying"
This works well with my family. I found when I was saying I can't hear you, they would talk louder from wherever they were, but I still couldn't understand. Now if I say that they tend to come to me, or wait for me to come to them.
On the 'where is that noise coming from'. My first real test today of the SSD anti-location of sound side effect. We have what we call block training. We go for a week, and on two day we practice scenarios. I'm a police officer for those who don't know. We are sent into a scenario sound stage with many different rooms and we have to find the threat and stop it. In the sound stage area, the sound echos. I couldn't find the shooter/bad guy/threat when they were making noise because I couldn't locate it. HOWEVER-my hearing colleagues were suffering the same deficit. Because of the echos, they couldn't find the guy either. We worked our way through it, and I found that I used my other senses more. It was fun, but very enlightening.
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Very interesting about using our other senses more to compensate for the SSD ..... It makes sense. (No pun intended. :D) Because I have no working vestibular systems, I was trained to become more aware of my visual and sensorineuro cues to maintain balance. In law enforcement, it would be critical to your safety to heighten your awareness from other aspects.
..... and "I can't understand what you're saying" is frequently heard in this household, as well. It really is not the lessened volume that is the problem, but the enunciation when things are monaural instead of stereo. Also, it is a brain thing, as well. If I know someone is going to be speaking to me, I sort of consciously perk up my awareness so I catch what they are saying from the beginning, rather than trying to "rewind" and figure out what they just said. Make sense??
Clarice
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"I can't understand you" is one of my favs! ;) I've said it before but THE WORST thing for me, by far, was when my babies started crawling & would crawl off to another part of the house & then start crying - I would frantically run thru the house, checking every room looking for them! ;) It was awful!! I've also learned to say, "What room?" when they say, "in here"!!!
Denise-
I think of the tinnitus as a kind of phantom thing. Even though I have no feeling in my face, every once in a while I get an INTENSE itch - it is truly maddening because all the scratching in the world doesn't help - & really, the bloody marks on my face don't help either!! :( just kidding!!! ;)
K ;D
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The "SSD Shuffle" - I like that, Denise! Very good name for the little dances we do - my friends have all adapted quite well, I must say...hubby still in training ;)
When I'm playing a tennis match and hear an "Out" call, I really have no idea if it was my opponents saying my ball was out or someone on some other court calling an out ball in a completely different match ::)
Thankfully, almost all of my "where is it coming from" moments are just funny, not crucial to a job or life threatening in any way...
cindy
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Thankfully, almost all of my "where is it coming from" moments are just funny, not crucial to a job or life threatening in any way...
I totally agree and am also very thankful that these moments, for me, are usually, at worst, just annoying. I know that's not the case for everyone, so my thoughts are with all who have to cope with this in more serious circumstances. I think we do tend to hone our other senses and become a bit more aware of our surroundings as a result of our difficulties with directionality.
My husband is getting a little better with naming the room he's in rather than just "I'm in here!"
And I think (or at least I hope!) that people with whom I talk are flattered by the absolutely rapt attention I pay them when they're speaking -- I don't take my eyes off their faces (and mouths!)
And I do my best to keep my dog in my line of vision when I'm on the phone so I'll know whether he's the barking dog I hear or whether it's the dog belonging to the person on the other end of the phone!
Catherine (JerseyGirl 2)
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Funny story (may have shared it before)...my sweet husband always walks on my good side - we have had a long time to perfect this!! :) He was on a business trip once and he & his boss were walking across a parking lot. Dave automatically moved to the man's left side...kind of freaked the man out...Dave had to explain that I was deaf and that he was accustomed to doing that with me!! ;)
K ;D
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How funny!!
When we were in LA last Saturday, Nancy and I kept doing the "shuffle" while we walked around LALive, since both of us are left-sided SSD. Little hard for one of us to walk backwards!!
Clarice
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I am good at walking backwards...or used to be - wonder how that would work these days? I used to have to run down the basketball court backwards so I could play defense...
I can read & write upside down, you think that is good for anything? ::)
K ;D
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How funny Clarice and Kay! I haven't looked at this thread in a while. I just noticed the one about the sound like a bee in the deaf ear. I was just thinking of posting something simiilar, so was glad I found that message. My surgery was 6 months ago and just recently hear an occasional zing at the top of my deaf ear. I think it's weird to hear a noise when the ear is deaf. I was wondering if anyone else experienced a noise when I read one of the previous messages. Sandy