ANA Discussion Forum
General Category => Hearing Issues => Topic started by: Helena on December 29, 2010, 02:27:20 pm
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I will be operated in january 2011 on my AN 25x33x35. It's translab because this gives the best chances for saving the facial nerve. But I will become deaf on my right ear. At the moment I have only a little hearing loss. I'm wondering if anybody can tell me how it is to live with single sided deafness. And if and how you can prepare yourself to it.
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I think that you will be amazed at how well you can function with just one good ear. Church, movie theatres, and tv programs were not problems. I work in a courtroom, so I got a Transear primarily to help me in that setting. There are lots of options available.
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Hi Helena,
My SSD was not from an AN, but did come on very suddenly. As mentioned by Brewers, there are many things you can accommodate to. However, the issues for most of us with SSD include inability to tell where sound is coming from (lack of sound directionality) and having trouble hearing in noisy environments, and also sometimes not being aware that someone is speaking to us to the deaf side of our body. There are many choices, and you should discuss those with your doctor. I have a BAHA and do love it, but others have different devices and are also happy. Just collect all the information you can and when it is time, demo a few of your options. Good luck.
~Dale
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I agree with Dale concerning the problem areas. I have read some here who actually got their BAHAs in during the AN surgery, thereby eliminating the need for an additional surgery. If SSD is a major issue for you, you might want to discuss this with your doctor. Susan
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Helena -
I, too, have to chime in about the BAHA.
I had the retrosigmoid surgical approach in the hopes that I could save my diminished hearing (with decent word recognition) but I ended up SSD.
Lots of people adjust to SSD just fine, but honestly I wasn't one of them. I found myself miserable and depressed, so 4 months post op when I tried the BAHA demo I was thrilled. I had the implant surgery 5 months after that - I only waited so long because my insurance company was fighting me over coverage - and the rest is history.
I'm truly enamored with my BAHA and I highly recommend it to everyone I know who is SSD.
That said, this is my personal experience and there are many on this Forum who are just fine being SSD. I'm sure they will respond to your post shortly.
Best,
Jan
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Hi, Helena! I'm one who has adjusted very well to being SSD. I went from as near to perfect hearing as you can get to SSD, so I too was concerned about it a bit prior to surgery. But, for me, it has been fine. Yes, as the others pointed out, directionality and loud places can present a challenge, but nothing too worrisome...for me, anyway. The directionality issue is just very strange...and sometimes comical...if you live with a husband like mine, that is ;) I remember prior to surgery wanting to go see Le Miserable again before I was SSD...thought I would never be able to enjoy that type of thing again (at least not in the same way). I was quite upset when I couldn't go. However, it turns out, I can definitely still enjoy musicals, movies, etc. As others mention, everyone is different and their "tolerance" for being SSD is different - job settings can be a factor, etc. See how it is for you and if it is too bothersome, you will have the option of a BAHA or other device.
Best to you!
Cindy
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Hi Helena and Welcome!
There really is no way to "prepare" for the SSD. You probably won't notice it at first, as you are recovering from brain surgery :o
I had the BAHA placed WITH my original brain surgery, because I knew I would lose my hearing. I had some problems with it getting infected, and the tinnitus got in the way, so they "unscrewed" the abutment.
This past Nov. I had another abutment put in and have the Oticon Ponto. I love it, much better than the original one.
The BAHA is always an option, either with the surgery, or down the road after you see how you deal with the SSD.
Best wishes for a successful surgery.
Keep us posted. We care! :)
Maureen
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Thank you all very much for your replies! This helps me a lot keeping my spirit high. I will try to cope with SSD and maybe later get a BAHA. I don't know if I will need it. Maybe I can live without.
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Hi, Helena ~
I apologize for being late in responding to your post but I wanted to welcome you - and mention that I've lived with being SSD for seven years and have adjusted to it quite well. Yes, discerning directionality is a problem and noisy environments (parties, crowded restaurants) are a challenge - but these obstacles are transient. You'll be saying "what?" a lot but the necessity to do so abates somewhat as you learn to adjust your body placement toward the person that you wish to hear. As an example of how SSD folks cope: my wife automatically sits (and walks) on my hearing side (my right) and I always sit at the front of any gathering (i.e. church) where I need to hear the speaker/singer/etc. At a round table meeting, I subtly turn my 'good' ear toward the person speaking. In time, these kinds of coping mechanisms become instinctive. There are devices to help with hearing the TV (called 'TV Ears®') that I use on a daily basis- and find very effective. I still enjoy music and don't find being SSD a huge burden although I had about 3 years to adjust to the loss of hearing in one ear due to the growth of my AN (unbeknown to me) that was slowly taking my ability to hear in my left ear and that I foolishly ignored for far too long. However, that gradual loss enabled me to make the kinds of coping adjustments I've mentioned. I assume a sudden 'overnight' hearing loss would be more difficult to deal with. Fortunately, the hearing in my 'good' ear is excellent and that is a blessing and makes being SSD a bit easier.
Of course the legendary BAHA is always an option as are other hearing devices designed to help those who are SSD. I may opt for a BAHA at a later date if and when coping with being SSD becomes too difficult. For now, I'm doing fine and I trust that you'll quickly adapt to being SSD and not allow the condition to have too great an impact on your quality of life. If it does, don't hesitate to seek out a doctor who will perform the BAHA implant and fitting along with an audiologist to do the 'tuning'. These devices are pricey (thousands) but usually covered by medical insurance as they are considered an implant, not a 'hearing aid', which are almost always excluded from medical insurance coverage. Jan is our resident go-to gal for BAHA information so seek her out (via PM or public post) should you find being SSD unbearable and need to find a way to alleviate the loss of hearing in one ear.
I hope that this and all the previous information posted to your inquiry proves useful and reassuring. I wish you a very successful AN surgery.
Jim
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SSD has been a very minor problem for me. I can still practice medicine ok and volunteer with police dept. I find my BAHA distracting when listening to hearts and lungs, because ambient sounds from the room interfere.
In fact, I rarely use my BAHA.
Everybody is different, most people hear love their BAHA's, mine is just a luxury I use sometimes.
Sam
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Hey Helen,
This month (January) will be the two year anniversary of my AN surgery that left me with SSD. I'm a business professional who works with lots of people. I also attend a lot of meetings, seminars, etc... and the SSD has been tough for me this past year. The hardest thing for me is having a good conversation with my family over dinner at resteraunts and in the public. The tentinitis has not been good, but I do find that if I don't think about it, I can manage. The first year was more about recovering from the surgery. I'm glad that I've waited to make the decision to explore the BAHA. I have an appointment in May. I've asked my doctor's office to go ahead and get a predetermination from my insurance company (BCBS) so that I can be prepared before seeing the doctor in May. Trying to get all my ducks in a row so to speak.
I remember months after my surgery the doctor placing the BAHA device on me to demonstrate how it works. I cried. But it was still a very emotional time for me. Now that I've given myself time to recoop from the facial weakness, which has vastly improved these past 2 years, I feel that I'm better prepared emotionally to handle the next step and the next surgery.
I advise you to not rush in to anything. Give yourself time to regroup.
Good luck with the AN surgery. My prayers are with you.
Gwen
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GwenB -
the two main reasons I decided on a BAHA were 1) business and 2) family and not necessarily in that order.
I was tired of being at a meeting and not hearing half of the conversation. I was also tired of nodding my head and agreeing to things I thought were being said or responding with a "yes" only to get strange looks from my colleagues. Sometimes just the looks on their faces made it quite obvious to me that my response didn't make sense. I also spent a lot of time trying to find the best spot at the conference table. You know the one; where you can hopefully hear everybody.
At home my kids were as frustrated as I was. I repeatedly said "what??" They'd try again only to get another "what??" from me. After about 3 rounds of this they'd just walk away disgusted saying "Never mind". There were times when they'd be on my "bad" side and I'd physically take them by the shoulders and move them to my "good" side just so I could hear them.
I felt I was missing a lot by being SSD without any kind of "aid". The day I tried the BAHA demo in my neurotologist's office I was blown away. When my insurance company finally approved my request for surgery and the processor I felt like I won the lottery. Things haven't gone down hill from there.
BCBS is notorious for giving BAHA candidates a hard time when it comes to coverage. If you run into trouble, contact Cochlear Americas (www.cochlearamericas.com) They have a division called OMS that will contact your insurance company for you and work on getting coverage. The only catch is that you must choose a Cochlear BAHA (as opposed to an Oticon BAHA). IMO that's a small price to pay. I'm on my 2nd Cochlear BAHA (upgraded from the Divino to the BP100) and I'm very satisfied.
If you have any specific questions about the BAHA, please feel free to PM me. Or start a topic on the Forum. You'll get lots of input.
Jan
Sorry for the hijack, Phyl ::)
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Sorry for the hijack, Phyl ::)
forgiven :)
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Thank you, Phyl :-*
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you will find that you instinctively learn to lip read, especially in loud enviornments.
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I've had SSD for 6 yrs now and nothing could've prepared me! The best advice I got was to get used to being deaf before deciding on a hearing aid.
The abrupt [literally overnight] loss of hearing was difficult by itself, further complicated by incessant tinnitus. Zero hearing on 1 side is bad enough but dealing with the noise in my head is a nuisance. The "frequency" of the noise changes, almost like a bad speaker on AM radio.
I rarely use my hearing aid and when I do, it's for directionality not word discrimination. For example, I wear it while walking the dog so I can hear oncoming cars but I don't bother wearing it during a phone conversation.
Prepare yourself and those closest to you
- you will not hear many things directed at you
- others should speak while directly facing you, i.e. not while walking out of the room
- minimize background noise, i.e. stove fan, running water, fridge hum, radio, TV, etc
Good luck!
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I hadn't been on the discussion boards for quite a while, but of late, I've been feeling quite sad about my SSD. It's been 18 months since I lost my hearing in my right ear. At first, I felt like a trooper. I was amazed at how well I adjusted. I remember sitting down at the piano two days after losing my hearing. It was truly shocking...I just cried...but I eventually rallied and I'm back at playing pretty regularly.
On another positive note, going to the theatre is still great. I remember sitting in the theatre during Jersey Boys with tears feeling so grateful that I could still take in the whole experience. It wasn't the same as before, but it was still pretty darn good.
That said, I've been finding my social interactions to be harder and harder. My restaurant experience is challenging, large work gatherings are challenging, and even small family gatherings where there are many conversations at once are challenging. I know that I'm missing a bunch of stuff, and it just bothers me. My head can only turn so many ways to pick up the sound and it's just hard. After a while, my head just fills up with noise and I want to run for cover.
From reading about the BAHA and even Soundbite, I'm realizing that while those solutions may help in quieter settings, life in the noisy fastlane is going to remain forever a challenge.
So, I don't think there is really anyway to prepare for the change. I suspect you may be as shocked as much as I was and you may simply need to keep telling yourself that it's better than having cancer, better than losing your legs and all those other comparisons we make to allow us to take comfort. That said, some days it just feels good to be pissed...and that is okay, too. :-)
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Hi Rjozer,
I just joined this group and wanted to let you know that all of those things you feel about your SSD, I have felt for the last 16+ years when I suddenly lost my hearing in my left ear. Having evaluated the BAHA a few months ago, I can tell you that it really helped me in both the quieter settings and the fast lane, too. I had become accustomed to either declining an invite to a loud club/restaurant or deciding to go there knowing that I'd never be able to participate in the conversations! With the BAHA tester, I was truly amazed at how much easier it was to hear ... so I took the plunge last week and had the surgery. I have no idea if it will trun out to be my answer but I can't just sit here and never try and always wonder "what if". Nothing will ever give us back what we know to be normal hearing ... but I would sure like to have more than what I have now.
There is no pressure for you to get the BAHA now. If and when you are ready, you will know.
All these years later, and I still grieve the lost of 1/2 of my hearing ... so many things I might have done ... and hoping I will now be able to do.
All the best,
Diane
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jrozer -
Just my experience, but being SSD depressed the hell out of me :'( Made me feel extremely old also - I was only 45 1/2 at the time.
The day I tried the BAHA demo is a red-letter day in my life. The day my insurance company finally approved my BAHA implant I felt like I had won the lottery. My BAHA Gotcha Day will go down in history as one of THE best days of my life.
This is just my personal experience, but if you find that SSD is making you miserable, check into options like the BAHA or the TransEar. IMO, they make a world of difference.
Jan
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Hello Helena,
I don't think you'll have any problems at all with SSD. I did my retrosigmoid in May 2009 and I had full hearing on my ear before the surgery and after I realized that I was in "the SSD-club", but I have less problems with SSD than I thought from the beginning. I work as at teacher and I have 25 pupils in my classroom the whole day long and it is no problems at all! The only thing that I have problems with is to hear from which direction the sound is coming, but it is not a big problem at all! I think you'll do just fine!
The best from Helene in Sweden :)
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Helena, I appreciate your optimism. What I have learned from reading everyones' posts is that everyone has their own experience. And like someone else said, it's difficult to prepare. Until you're in it, you just don't know. I was saying to my husband this morning..."thank g-d I don't make my livelihood having to wine and dine clients in restaurants!" Can you imagine!?! Just torture! Best advice...be brave, seek support, and let yourself have that cry when you need it. And then smile on those occasions when life is just easy...those are the best moments.