ANA Discussion Forum
General Category => Hearing Issues => Topic started by: nteeman on March 18, 2009, 07:49:18 am
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After my 1/27/09 surgery I became SSD. I did have some hearing loss before surgery and I knew there waas a good chance of losing the hearing ability in that ear. Now I have been adjusting. At first I thought SSD is not so different than how I was prior to surgery as I did already have hearing loss in that ear. But now I find myself having more and more difficulties hearing and understanding people. Sometimes it is anoying, other thimes funny but I do find myself having difficulties at times.
I know I am very lucky as I did not have any facial paralysis, eye or balance problems but I've come to the cocnclusion that I have to make some kind of effort to adjust to
SSD--I just can't go on like nothing has changed.
I did try the BAHA demo at my ENT's office and was not impressed. I will be seeing an Audiologist this weekend about the TransEar aid.
Question: When I wake up in the morning I sometimes hear a series of clicking sounds in my AN ear -- it is like click-click-click-click, pause,click-click-click-click. Sometimes I think I hear a delayed swoosh sound in my deaf ear after hearing a loud sharp sound, such as a book dropping or a loud stomp. It is like the sound of the inpact followed by a short swoosh heard in my deaf ear. Very weird.
Any thoughts?
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Hi Neal! To talk about tinnitus, I`ve had mine for about 30 years. Over the course of that time many new sounds have come and gone. Right now I`ve pretty much setteled into clicking w/ ring when I get up to purely ring during the couse of the day. I`ve done the Neuormonics which has been about 50% affective which is a big help. It takes time to get used to things. Over the course of my time for the most part it`s just part of my "being" which I guess you can say I addapted to. Keep looking into whatever may help you. At the beginning being not used to things might make it a little more uncomfortable. As time goes by I do believe you will get whatever help you need and will adjust to everything else which will become normal to you. I`m glad to see your doing well, Mickey
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Question: When I wake up in the morning I sometimes hear a series of clicking sounds in my AN ear -- it is like click-click-click-click, pause,click-click-click-click. Sometimes I think I hear a delayed swoosh sound in my deaf ear after hearing a loud sharp sound, such as a book dropping or a loud stomp. It is like the sound of the inpact followed by a short swoosh heard in my deaf ear. Very weird.
Any thoughts?
Hi Neal,
I'm 2 weeks out of surgery and notice the clicking mostly in the morning upon waking up. Do you still have some pressure? I attribute mine more to continued changes inside due to surgery. My clicking is just like "airplane" clicking, with changing pressures.
I have described the same echoing sounds in my update posts. Any noise above and beyond what I would consider "normal" seems to "bounce" or "echo" to the deaf ear, but mainifests itself as a loud swoosh or other noise. Not true hearing, but I get the same pattern. Brains are really complex things. I just attribute the noises to my brain making up the noises it thought it should have heard in the other ear :).
Hope that helps.
Ernie
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Hi Neal! To talk about tinnitus, I`ve had mine for about 30 years. Over the course of that time many new sounds have come and gone. Right now I`ve pretty much setteled into clicking w/ ring when I get up to purely ring during the couse of the day. I`ve done the Neuormonics which has been about 50% affective which is a big help. It takes time to get used to things. Over the course of my time for the most part it`s just part of my "being" which I guess you can say I addapted to. Keep looking into whatever may help you. At the beginning being not used to things might make it a little more uncomfortable. As time goes by I do believe you will get whatever help you need and will adjust to everything else which will become normal to you. I`m glad to see your doing well, Mickey
Mickey,
So the swoosh and clicking sounds I hear in my 'deaf' ear is part of tinnitus? I do hear ringing sounds when there is a lot of background noise but as things quiet down it goes away. What is Neuromonics?
Thanks,
Neal
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Hi Mickey, there is also the option of the cros aid which requires you too wear two aids, also about the baha i took it home for the weekend and it is really good, the headband doesnt really do it justice as its tight on your head, she gave me a device that you put between your front teeth and bite on it the baha clicks onto it , its amazing the sound quality, and she said it is even better once its on your conduction bone, i havent tried the transear yet so i cant comment on that.
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Hi, I have all those sounds and more at varying times... no set pattern or times though. It gets worse when I get dehydrated although
coffee doesn't affect it (as long as I drink enough h20 throughout the day!).
It's been 14 months for me and I do find the SSD VERY frustrating although I cope very well generally so do not share the fact...
I have been spending some time in theatre (surgical!) but it has been a nightmare at times - not from the tinnitus but just not quite being able to hear all that's being said when machines are going and masks are on. It has made me feel quite at a disadvantage. Fortunately I am just observing - would obviously not be able to work in that kind of environment - and have only been asked to do one thing and the surgeon was foreign and again masked up but fortunately the scrub nurse couldn't understand him either to begin with lol (unless she is SSD to!!) I think I give myself a hard time.
Sometimes I have to ask people that do know I am SSD if they can hear something I am struggling with and most often they can't hear whatever it is too well either. I am reminded there are worse things to have pretty regularly: the ward I am on at the moment gave a diagnosis of ovarian ca in the last couple of days which they believe has spread to other organs and the poor lady was obviously devastated...
... doing my best to keep things in proportion but yes, frustration is my biggest problem - really miss my hearing at times and wish the tinnitus would take a hike!
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I live in Canada and sadly we do not have the Transear... still waiting and hoping it will be here soon.
I am very interested to see what you think.
Michelle ;D
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Hi Neal! Yes, all kinds of sounds can be considered tinitus. My mother has also had it for as long as she can remember. There is something called American tinnitus association. I did look them up a couple of years ago and went to a meeting with my mom on Long Island. Very many people do have it other than people with AN. It`s my only symptom other than a little hearing loss high pitched. Neouromonic was an expensive treatment which subdued the intensity of my sounds. They do have some audiologists out on Long Island who deal with it. I really don`t have their names but just invesigate a little. I f you need mine shes in NYU medical center, Theresa Shaw. Mickey
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I did try the BAHA demo at my ENT's office and was not impressed.
Seriously, Neal? While I would never "push" a BAHA implant on anyone, I have never heard this comment from anyone who has tried the demo; actually I'm pretty shocked :o
I'm also curious. What didn't impress you?
I personally was blown away by the demo and it solidified my decision to have the implant. I consider the BAHA one of the best things I ever did.
Give us some feedback, please.
Jan
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I did try the BAHA demo at my ENT's office and was not impressed.
Seriously, Neal? While I would never "push" a BAHA implant on anyone, I have never heard this comment from anyone who has tried the demo; actually I'm pretty shocked :o
I'm also curious. What didn't impress you?
I personally was blown away by the demo and it solidified my decision to have the implant. I consider the BAHA one of the best things I ever did.
Give us some feedback, please.
Jan
Jan,
I found the benefit to be minimal -- certainly not enough to convince me to go through another surgery and get the implant. I definitely was not blown away. It was 3 weeks after my surgery and I would try it again if the idea of the implant was not so unappealing to me. I fear a similar result with the TransEar. Unfortunately they do not offer a demo, But here in NY you have 45 days to evaluate a hearing aid and return it if not satisfied. I might just be one of those who have to learn to live with SSD without anything for now.
Neal
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Hi Esperanza,
I too have had hearing loss for sometime and it is getting worse. It is frustrating. I even hear my own voice through my an ear when I am speaking and find that I speak loud. I am also watch and wait. My an is 8mm. The surgeon told me that with surgery I will lose all my hearing immediately. The stats for radiation show that maybe if there is some hearing left, it may be preserved but lost overtime. I am concerned with more than that right now. I understand how you feel. It is annoying. Specially when you are at work and have to deal with people and the phone. Do you have ear blocking. I have been getting that, feels like my right side is under water.
Vivian
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Hi Vivian,
Progressive hearing loss is what got me into treatment rather than waiting on my 8mm AN. I remember a discussion with Tumbleweed, where we were saying that if you could preserve your eyesight for another 5 years, would you do it, or would you say that's not long enough, might as well be blind now? We both concluded that saving some hearing for a while was worth the effort, even if it is not forever. I am wearing a hearing aid in my AN ear, and am happy to have some useful hearing on that side. It will probably fade, even my right ear is fading gradually, but it seems like it will be useful for some time yet.
I really don't mind the tinnitus, it is the darn crickets everywhere that bug me. :)
Steve
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Thanks for the feedback, Neal.
The BAHA is definitely not for everyone. The TransEar isn't either. It's just like your treatment decision - very personal choice.
I'm not sure, but you may have tried the BAHA demo too soon post op. My doc insisted that I wait for my head to "heal" from my AN surgery and while healing is different for everyone I generally think it takes at least a few months. Then again whether your head had healed or not may be irrelevant.
Good luck with the TransEar - lots of forumites like theirs.
If you find you don't, there is still the possibility you'll adapt just fine to being SSD. Lots do.
Please keep us posted.
Jan
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I wonder if the experience of treansear/baha differs depending on the bone density of the skull? I haven't had a trial of either so
I don't know but I figure my skull is pretty dense! so I am hoping the transear will suit or maybe it's better if it's not so dense? Anyone know?
Vivian, I have no hearing at all in my AN ear - completely gone and suddenly unfortunately - catastrophic loss they called it and I agree - I know if I had the chance at saving any of my hearing I would go for it without hesitation especially knowing what I know now.
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Thanks for all the replies. I got fitted for the new TransEar 380-HF today. I will post once I get it and report my review.
Neal
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Hello Neal,
You and me are in the same boat. I had translab 2 days after you and now I'm SSD. Before surgery, i had 60% hearing loss; I had more hearing in lower ranges. I also thought being SSD would feel pretty much the same (it's not).
Here's what I'm learning 8 weeks post op -
my tinnitus seems better, but it's still there
in environments that aren't too busy or noisy or echo-y, i seem to function just fine. My hearing also seems sort of stereo in these ideal settings.
when there's noise around (a crowded room etc,) it does limit my capacity to hear
This is all obvious stuff. What surprises me now is how different things sound , and they're always changing. I have yet to hear any clicking (i've know several others have heard clicks). But I do hear weird noises. Sometimes my hearing is so obviously impaired. But sometimes, it seems more sensitive. I seem to be more aware of some sounds, at least part of the time. It's very different. I ran in a race the other day (with 8000 others). I've run a lot of races, but when we started, it seemed like every person there was chattering! I've never noticed that before; just noticed a couple of people talking. It sounded like the whole world was talking softly. Today when I walked up my driveway, i was really aware of my feet hitting the ground (i wasn't marching or anything!). it's just seems to be an acute awareness of background noises at times.
Other times, i just hear some loud or pronouced noise. This morning i swore i heard thunder (weather was clear). the other night i heard a loud, high pitched screech in my deaf ear (only lasted a moment, thank goodness).
Since I'm going through these changes and adjusting to the new type of hearing i have, I'm holding off on the BAHA or other decision. And, like you, I just don't want another head surgery there right now. Once things 'settle down' I want to check into the BAHA, or Transear (leaning towards BAHA, but will be looking forward to your impressions of the transear). I'm hoping that once I adjust to hearing loss that when i do get a hearing aid, it will be better and I'll be thrilled! Right now, it's been a year since i heard normally anyway. Hopefully a hearing aid will someday bring a big improvement.
Keep me / us posted. I hope you come up with some solutions that you are satisfied with.
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Hello Neal,
You and me are in the same boat. I had translab 2 days after you and now I'm SSD. Before surgery, i had 60% hearing loss; I had more hearing in lower ranges. I also thought being SSD would feel pretty much the same (it's not).
Here's what I'm learning 8 weeks post op -
my tinnitus seems better, but it's still there
in environments that aren't too busy or noisy or echo-y, i seem to function just fine. My hearing also seems sort of stereo in these ideal settings.
when there's noise around (a crowded room etc,) it does limit my capacity to hear
This is all obvious stuff. What surprises me now is how different things sound , and they're always changing. I have yet to hear any clicking (i've know several others have heard clicks). But I do hear weird noises. Sometimes my hearing is so obviously impaired. But sometimes, it seems more sensitive. I seem to be more aware of some sounds, at least part of the time. It's very different. I ran in a race the other day (with 8000 others). I've run a lot of races, but when we started, it seemed like every person there was chattering! I've never noticed that before; just noticed a couple of people talking. It sounded like the whole world was talking softly. Today when I walked up my driveway, i was really aware of my feet hitting the ground (i wasn't marching or anything!). it's just seems to be an acute awareness of background noises at times.
Other times, i just hear some loud or pronouced noise. This morning i swore i heard thunder (weather was clear). the other night i heard a loud, high pitched screech in my deaf ear (only lasted a moment, thank goodness).
Since I'm going through these changes and adjusting to the new type of hearing i have, I'm holding off on the BAHA or other decision. And, like you, I just don't want another head surgery there right now. Once things 'settle down' I want to check into the BAHA, or Transear (leaning towards BAHA, but will be looking forward to your impressions of the transear). I'm hoping that once I adjust to hearing loss that when i do get a hearing aid, it will be better and I'll be thrilled! Right now, it's been a year since i heard normally anyway. Hopefully a hearing aid will someday bring a big improvement.
Keep me / us posted. I hope you come up with some solutions that you are satisfied with.
Keri,
Thanks for your reply. I will definately let you know how I do with the TransEar. I was fitted last Saturday and I am now waiting for it to be delivered.
I went to a meeting at my Masonic Lodge Monday night and noticed a few things. First, the lodge room is big and has lots of ECHO -- this caused a constant ringing in my deaf ear even if only one person is talking. Next, many of my lodge brothers hadn't seen me since before the surgery and when several brothers would call me at the same time I found myself turning round and round trying to figure out who was calling me and from where. After a bit some would call out 'I'm over here!' I reacted with a laugh and it stuck me as more humorus than anoying and while I realize that in another situation this could be hazardous, I also realized that I can, and must, learn to live with this.
Cheers
Neal
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Wow, Neal. As far as I know you are the first to mention the woosh/thump. I get it in the middle of the night. I've had tinnitus for 25 years and it was only after surgery that it started happening. I thought it was my neighbors above me until I moved and I didn't have any neighbors above me. I'm seeing my doctor on Friday and I'll ask.
David
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Hi everyone, I got my new TransEar 380-HF with bi direction microphones it is nice I have been deaf in my right ear since I was 7 yrs old I am now 39.I tried a cros aid in 1998 an hated it I went to the audiologists 2 weeks ago and he told me about the trans ear and baha but recommened the transear which he heard about and it was new to him so I got it, I love it it would be like have a head set on and turning the volume up to 3 in your good ear. Of corse they tell me that my brain will learn to adapt to hearing again in my right ear so we will see if it gets louder but I am happy with it because I could not hear out of it any way so I am so happy I have some hearing out of it. The only problem that I am having out of it is so times I get alot of feed back towards the afternoon when I turn my head or talk. but the audioloigist is still fine tuning it.I did not have the old model so I can not compare sorry but this model is great get the bi directional mic they say I am the first to have it they did not even put it on the order form yet I just happen to talk to transear and they told me about it so I told them to put it in it was a $100.00 more the hole thing was 2500.00 but my insurance covered 1400 of it. hope this helps.
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Hey Neal (and everyone who has had this),
I saw my doctor today and asked him about the whoosh, thump sound I get in the middle of the night -- what you desribed too. He wasn't surprised at all. He said that is a result of SSD. Your brain is making up stuff. And to think that I thought it was noisey neighbors.
David
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David,
Yes, and as I awoke this morning to one of those phantom sounds with some relief I realized that you heard it too.
;)
Neal
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Hi, Neal!
I've had progressive hearing loss in my right ear for 5 years. My audiologist says I am now SSD, although I do have some hearing in that ear. The upper portion of my ear is dead and my speech recognition is only 36%. I don't know if I have an AN, may not, but I do have the hearing loss. My audiologist said to stop wearing my hearing aid and in a noisy environment, to put an ear plug in my bad ear to stop it from trying to hear.
The first time I experienced a "whooshing" was during my last hearing test. As I understand it, as I was being tested, the tone was in a frequency range where my ear is dead. The volume was so loud that other areas of the cochlea picked up the vibration and it comes across as a whoosh. I don't know if that's what you are experiencing.
As for tinnitus, I have a constant high-pitched tone. I do experience fluttering sounds frequently and every now and then Luke Skywalker and Darth Vader try another light-sabre fight in my right ear. Can never tell who wins, but it's quite a show while they're doing it! ;D My tinnitus is pretty constant, all things considered. It does bother me but I just have to put up with it. I wish I could just hear "silence" again for even a few moments.
Since my hearing has been progressively worsening, I have probably just adapted slowly over time without realizing it. Yours would be more dramatic. I do find that I can't understand anyone on my right side and I'm constantly doing the SSD-shuffle trying to move so that I always keep people on my left side. It is funny how many people move with me and I have to tell them to stay still while I move so that I can hear them.
You do get used to SSD and cope with it. Over time it becomes less of an issue. I find that I just avoid situations where there is a lot of background noise (such as dances and house parties).
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Hi, Neal!
I've had progressive hearing loss in my right ear for 5 years. My audiologist says I am now SSD, although I do have some hearing in that ear. The upper portion of my ear is dead and my speech recognition is only 36%. I don't know if I have an AN, may not, but I do have the hearing loss. My audiologist said to stop wearing my hearing aid and in a noisy environment, to put an ear plug in my bad ear to stop it from trying to hear.
The first time I experienced a "whooshing" was during my last hearing test. As I understand it, as I was being tested, the tone was in a frequency range where my ear is dead. The volume was so loud that other areas of the cochlea picked up the vibration and it comes across as a whoosh. I don't know if that's what you are experiencing.
As for tinnitus, I have a constant high-pitched tone. I do experience fluttering sounds frequently and every now and then Luke Skywalker and Darth Vader try another light-sabre fight in my right ear. Can never tell who wins, but it's quite a show while they're doing it! ;D My tinnitus is pretty constant, all things considered. It does bother me but I just have to put up with it. I wish I could just hear "silence" again for even a few moments.
Since my hearing has been progressively worsening, I have probably just adapted slowly over time without realizing it. Yours would be more dramatic. I do find that I can't understand anyone on my right side and I'm constantly doing the SSD-shuffle trying to move so that I always keep people on my left side. It is funny how many people move with me and I have to tell them to stay still while I move so that I can hear them.
You do get used to SSD and cope with it. Over time it becomes less of an issue. I find that I just avoid situations where there is a lot of background noise (such as dances and house parties).
I know just what you mean. I've been trying to keep it a humorous aspect of my life. The other day at work after I finished my business I was washing up as my boss came to use the sink on my left (SSD) side. He ran that faucet and began talking to me very seriously about some work issue. I kept nodding my head as if I understood him and then as he paused to get my reply to whatever he had just asked me, I replied with a smile, "You know you are on my deaf side and with 2 faucets running I have no f*ing idea what you are taliking about." We both had a good laugh. ;D
Neal
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Very funny story, Neal and a wonderful "live" illustration of what SSD is really like.
I've been in situations like this many, many times - especially at work. Prior to my BAHA I just used to nod my head, smile, and say "um hm".
It was frightening how many times I had no idea what I was agreeing to or what people had just told me. My BAHA has helped me greatly in this area. I'm confident your TransEar will do the same for you.
Jan
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Great anecdote, Neal. It's a good thing you have a boss with a decent sense of humor. If I had said that to my boss's boss Randy, he would have been quick to reply "Do you ever?" :D
Steve