ANA Discussion Forum
General Category => Hearing Issues => Topic started by: stoneaxe on April 13, 2009, 11:02:07 pm
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SSD at least...went to the ENT today and the audiology tests confirmed my suspicion that any minor remnant of hearing I had is completly gone. In 2006, last test, I had some hearing remaining in my AN ear for lower frequency sounds...at least enough to give me some indication as to direction or sound source but nothing really useful. Today even that is gone. Oh well...wasn't doing me much good anyway.
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Yeah, I'm thinking I'm dealing with the same thing. I can "hear" when I rub my ear, but certainly can't pick out direction of sound if it's beyond an inch from my ear. I probably won't hear that mosquito going in for the kill since it's a high pitched sound they make. I'll report on my hearing sometime in mid May.
Sorry to read about your officialness, but I'm guessing you knew that already. I hate to read bad news from people, especially upbeat people like you, Capt. Deb and even one of our newer posties, Nancy. You guys are so upbeat and positive, yet face some obstacles that could easily bring a mear mortal to tears.
Perhaps you can come to Tampa some day and show me how to do stand-up paddle boarding :).
Ernie
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Bob, Hi.
It made me sad to think about your SSD. I know there is possibility of that for all of us - so sorry it is 'official.'
What i am grateful for is your information/experiences regarding paddleboarding and this form of vestibular therapy!
What amazing things you do on that board! I always think i am 'too old' to try stuff like that.
Well, i better get 'over it' - one bout of vertigo scared the crap out of me, so i know if you can do it, i can do it!
Maybe i won't get to paddleboard (land-locked) - but keeping in shape and challenging your limits, you are such an INSPIRATION!
All my best to you - i know you will rise to meet the SSD challenge too!
Sincerely,
Sue
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Yeah, that was a good news/bad news thing for me in November when we were addressing approach for surgery.
Dave was in the booth with me and said he couldn't believe I couldn't hear the blasts they were injecting into my right ear.
But I was fine with it because it meant a better likelihood of facial nerve preservation via translab. We still have to see about that, but of course, I'm optimistic 5.5 days post-op.
I've had some close calls and unpleasant situations result from SSD, but the biggest loss is stereophonic sound for music and, of course, triangulating for position.
We'll deal, right, Stoneaxe?,
Just be extra careful out there.
Nancy
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Hey, Bob! Sorry you got the "official" news about your SSD, but sounds like you had unofficially accepted it already. With your active lifestyle and great attititude, it obviously hasn't kept you down and out (of the water)! So, we know you'll keep on keeping on...while encouraging others to do the same.
Nancy, you absolutely must remain optimistic about your facial nerve...and I know you will! It is very early yet. Mine took roughly 6-8 weeks to resolve itself. Remember the whole patience thing we bring up every once in awhile around here ;)
Have a great day!
Cindy
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Stone -
not really sure what to say in this situation. On one hand, I'm tempted to say "my condolences" on the other I feel like telling you it isn't the end of the world. Neither choice seems quite adequate. However, it may help to say you're not alone - you're now part of a very special group; present company included.
Being SSD isn't as horrible as some other things, but I know from experience just how aggravating and frustrating it can be. In addition, it made me feel just plain old - sorry there's no other way to put it.
But on the bright side there are options. I love my BAHA and think it's a very good option for those who are willing to go through the surgery and have something permanent implanted. If you're not that type, those who opted for the TransEar seem to be very satisfied with that choice.
On top of all that there are some who have adjusted just fine to SSD - Jim Scott, Kaybo, etc., - so you may decide just to live with it.
Whatever direction you go, know we are here to offer support and advice; so don't hesitate to ask for our input. We're not a shy group :D
Jan
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Okay, now it's time to propose another entrepreneurial venture. I have always wanted to create an earring for my AN side that reads very clearly in some graphic or textual form that I am deaf in this ear. I have been a social outcast as a result of my disability since 2001. I nod and smile for long, boring hours at parties, knowing not what I'm agreeing to or with . . . well, you all know the scoop. People think I'm ignoring them, ya da, ya da, ya da.
And since we're ALL pirates here, there could certainly be a male version.
Dave is an artist and sculptor and could create the pattern for fabrication. In the meantime, I'll have a go at some ideas.
Love you guys,
Nancy
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Stone,
I remember well hearing perfectly and then suddenly not hearing at all. It didn't "hit" me until the audiologist said, "You are completely deaf on your right side." It was like someone told me that someone very close to me had passed away. I think on my drive home, my grief counseling days kicked in. I treated my hearing loss as a death. I forced myself through the same steps that folks go through with grief. It helped me deal with the loss. After one year of feeling all of the pain and anger of dealing with the loss I told myself I had expended all of the energy I was going to expend. I needed to get on with my life. I still have days that it really gets to me. I do not have a BAHA because I am not up for more surgery. A Transear was not an option for me either. I have never been a headset or ear bud person, no Ipods for me! If I have a day I feel sorry for myself because of the hearing or rather not hearing problem, I allow myself ten minutes of grief. Sometimes I cry my eyes out, other times I have an old fashioned pity party. This has been a really good tool for me.
I know that you are a very strong person and you will make it through this test of will. I figure if you can paddleboard, you can do anything! Best wishes, good thoughts and prayers coming your way. You are a remarkable person!
Hugs,
Brenda
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You know this idea was brought up by another forumite - possibly Boppie - but never really went anywhere.
The ANA does sell buttons that say "Deaf Left" and "Deaf Right" and have their logo on them. You can check them out on the main page of this website.
I could see Bob with a pin, but not an earring. No offense, Bob. You just don't seem like the type - which IMO (and it's only an opinion, folks) is how it should be. I never quite understood men in jewelry.
Jan
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Hi Bob,
I lost the hearing on my right side within a matter of 4 months. Yesterday I went to the grocery store to get a can of cat food. One of my cats likes his food very juicy, so automatically I picked up a can and shook it in my SSD ear to hear if it was juicy (just reflex). It brought on an emotion I can’t even describe. I almost lost it in the store. It will definitely take time to get used to.
Scarlett
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I used to feel bad about my life from time to time, and I can tell you that a brief walk through the lobby of The Children's Hospital of Boston will cure that quickly.
We're going to help you get through this realization. It's been there; you just weren't aware. I had the same occurrence.
It's a beautiful day. Go outside. Live every day to its fullest.
Nancy
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Bob
when you meet me in person Sunday, you will first-hand witness my deficits in life.... but, you will also witness how I forge on. SSD is ok.... and you continue to forge forward, as best as you can, even when life has dished out the deficits... as other "senses" will help to make up for it.
Pls hang in there!
Phyl
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Hi Stone,
It's weird isn't it when you realise, or you're told that you're deaf? I obviously knew that my hearing would go after translab, but to be honest I don't notice that much of a difference from before. Granted my hearing was rats**t before but it was still there. I guess you don't notice that much of a difference now or it wouldn't have come as such a shock to hear the words. Perhaps it is just the words that shock us or the knowledge that yes - we are deaf in one ear? Because I hadn't noticed a discernible difference in my hearing post-op, I've kind of been living in this make believe world that perhaps I'm not deaf after all!! I got given a gift for my birthday of some headphones (or rather a single headphone) that is stereo. ie, instead of using a set of headphones and listening to the with the one good ear to half the stereo sound, this one headphone has the whole stereo output going into the one bud if that makes sense? Today I used the headphone for the first time and thought, mmm, I'll test my AN ear with it! Well, I am saddened to report, after all my denials I am in fact absolutely, 100%, unquestionably deaf in my right ear, not even the 1812 overture would register. So I hear ya - today is the day for confirmation of deafness. And after my initial disappointment - I realised it's not the end of the world. I'm getting on quite nicely without the hearing. Ask me again once I get back into my normal life in the UK, go to the pub with friends and can't follow the conversation!!!
For now life is great - and so is yours
xxxx
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Lipreading in pubs is a must! And demand the seat necessary for as much exposure to conversation but not necessarily the session musicians! And have a Guinness! Ask to have things repeated if you care or just nod if you don't. Smile a lot. Be happy, don't worry. Life is grand.
Nancy
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When I woke up in the hospital after my surgery, I was sure I could hear out of my right side. The doctor said, "no, you don't". I appreciated his candor. They had to remove the hearing nerve in surgery. He described it as a tangled bumch of fibers tangled up with a critical blood vessel. They had to remove it. I guess we could say that my AN ate it for lunch.
I do hear myself scratching my head on the right side. I understand that the sound is conducted through bone and I am really hearing it on the left side, which is smart enough to know I am scratching the right side of my head. Does that make sense?
Nancy - I love the idea of something to tell people about my SSD. I am still adjusting to SSD, and finding it hard in stores and public places.
Samantha
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Did you have radiation? Did you have hearing at the time of your treatment and how long before you loss total hearing ? Sorry for so many questions.
Patch
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Patch,
I believe Bob/Stoneaxe had proton radiation therapy at Mass Gen Hospital in Boston
Phyl
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Yes, Samantha, that makes sense. It is a very big adjustment. I just try to be aware of my surroundings more than most people have to be. It means a lot more running and looking around to figure out where a sound is coming from. Mine has been gradual enough that it has not been a huge shock. If somebody else happens to have a problem with my social ineptitude, well, that's their problem, isn't it. I just smile and say, "I'm sorry, I'm deaf in my right ear." They cannot relate to that circumstance, and I don't expect them to. You don't understand it unless you experience it. When my kids were in middle school there was a program that brought disabled folks into the school and put the kids in their "shoes". It was extremely beneficial to their awareness of those with need for considerations beyond their own awareness.
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Bob:
Like everyone else here, I'm sorry to learn of your being pronounced 'officially' deaf in one ear. It stinks but, believe me, it is manageable.
Due to my undiscovered AN, the ability to hear in my left ear went slowly over a five or six-year period so in a weird way, I was 'lucky' because I had plenty of time to adjust to the loss (I never had it checked out, assumed it was work and/or age related). As Jan noted, I'm one of the folks that opted to forgo a BAHA or any other hearing aid. As a person who reflexively copes when a problem arises, I just adapted to my hearing deficit by positioning myself and doing whatever was necessary to make the most of what hearing I had. Fortunately, my hearing in my 'good' ear is acute and that helps, but of course, I still miss things, have to say "what?" fairly often and in social situations I often have to rely on my wife to repeat things I missed,. On my own, I either ask people to repeat themselves (explaining I'm SSD) or, like our new 'postie', Nancy McDonald, I just smile and nod, sometimes inappropriately. Oh, well. I can assure you that being SSD is both surmountable and, eventually, isn't the trauma it seems at first. Of course, the BAHA is always an option. Those who use them are almost always elated with the results. I may go that route some day but for the present, I'm doing O.K. with my one good ear and don't feel especially deprived, although I would love to have even a little hearing in my non-functioning ear.
To sum up, I find being SSD to be more of a nuisance than a disability. I trust you'll find a way to deal with your SSD that works for you.
Jim
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I also just smile and nod in loud social situations. If I feel it was something that I really needed to hear, I simply ask them to repeat it...rarely, if ever, do I even mention the SSD to new people I meet
The other day, I moved to the other side of a friend who knows I'm SSD, so that I could hear her better. She immediately apologized to me, but I think it is MY responsibility to adjust so that I can hear, not hers to remember about me...heck, my husband can't even keep it straight :D In fact, it has really been quite a source of amusement for us - yes, we're possibly a bit weird ;) My hearing was very nearly perfect prior to the surgery in Nov, but it has not been much of an issue at all for me. Yes, it is different, wouldn't choose it, but in the big scheme of things...
I did have a moment recently when I was driving and heard a train, but had no idea, of course, where it was coming from - was a bit unnerving ???
Cindy
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Stoneaxe,
You're in good company - even if we can't always hear each other! :D
Lori
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Hi Bob and 'the Boss',
It was so nice to meet you all today at the lunch!
I knew for sure I was SSD (translab) but thought at times that it sure seemed like I could hear some sounds from my deaf ear. I did what JB did, I put my ipod earphone in and heard nothing! Plus, like Nancy said, I wish I could read lips in a pub like setting. Today at the brunch was very interesting. It must have been quite the challenge for all the SSD people - it sure was for me. I found it fascinating to sit there and try to figure out where a voice was coming from. I had Phyl on my left (my deaf side) and Laura on my right. Even though Phyl can be very emphatic!!, I heard more clearly just these random voices coming from who knows where? It was kind of weird. At least everyone was so patient with each other and their hearing deficits!
When I was at my hotel last night, I called the front desk for a wake up call. I had the phone on my left (bad) ear (I really don't know why - hadn't done that before). I kept waiting for the dial tone and wondered why the phone was dead. Then duh, finally I figured it out. But it's always still a shock! I mean, sometimes it DOES seem like there's hearing on the bad side.
Again, it was nice meeting you!
Keri