ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Kabe on December 15, 2008, 09:28:52 am
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I'm still waiting on my doc to get back with me but my MRI def. shows a tumor on the right. I interpolated the size to be about 2 cm x 1.2 cm. I'm mentally preparing myself for the probable SSD outcome of surgery (should I go that route and that is my gut feeling currently). I'm certainly jumping the gun here but I like to be as prepared as possible. Can you describe your experience being SSD? How did you adjust? What is it like? This may sound silly but I find myself covering up my right ear as tightly as possible to get a feel for what it will be like. I love music and "attempt" to play guitar. Anyone else able to carry on musically? Its' just an infrequent hobby but I think that listening to music will be a big adjustment.
Thanks in advance.
Mike.
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Hi Mike,
I had GK, so I still have a bit of hearing in my AN ear, but word recognition is gone, so I might as well be deaf in that ear. The one thing that is unsettling about SSD is that you lose your directional hearing. If you walk into a busy store and you are gazing about and somebody says May I help you?, you may turn to see who is there and you will usually turn to your hearing side, but the sales person might be on your AN side. His/Her voice travels around to your good ear and that's where you think they are. And, on the street, if somebody calls out, "Hey, Mike!", you probably won't know exactly where that person is anymore. It's a bit disorienting, to say the least. You have to learn to watch for cars in the parking lots and be more alert to your surroundings as your hearing might not be helping you as you are used to it now. There have been quite a few people on here who have something to do with music and I would guess that it's an adjustment that you make and then, still enjoy your music, just in a different way. I hate to say this, but you also need to consider the possible tinnitus that accompanies AN's most of the time. It is the lucky few who don't have some degree of tinnitus. That can interfere with music appreciation. Still, it's but another adjustment in the scheme of things. You might look into BAHA or Croslink hearing aids. There are many people on here who have found it helpful.
Best of luck to you,
Sue in Vancouver USA
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Thanks Sue. Those are the things I need to prepare for. In the grand scheme of things it's something I can and will live with. I already can't hear that well at all on the right and have a lot of trouble with voice recognition. So I definitely think SSD is better than facial paralysis.
Mike.
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Mike, Your tumor is exactly the size of mine at surgery time.
I had another experience last week that describes my SSD perfectly. I was showing the door prize I had won at a luncheon of 80 ladies sitting at round top tables. I announced that I couldn't find a tag in the gift to thank the donor. The donor (whose voice I recognize as "Liz") spoke out and said, "It's from me". I knew the voice was out there in front of me but could not find it. Since I didn't acknowledge the voice right away she poke out again. I asked, "Where are you, Liz?" as I scanned the room. She exclaimed as she waved her arm, "Right here!" There she was sitting twenty feet from me at the 2 o'clock place on my radar! Well, to say the least I just chuckled and went on to thank her. All of my friends know about my deafness but still do not understand SSD. My husband and family laugh along with me about the situations that SSD gets me into.
Life is good.
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Thanks for that. I'm sure there will be many situations where laughter is the best medicine! I noticed you have Transear. How has that worked for you. I'm still researching BAHA and Transear.
Hope it was a nice door prize :)
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Kabe:
Sue has offered a fairly comprehensive overview of what being SSD is like and, I can add a few things.
I need the TV much louder than my wife, which made it uncomfortable for her to watch it with me, so she bought me a set of 'TV Ears'....wireless earphones that attach to the TV speaker and allow me to crank up my sound while the actual sound on the TV speaker is 'normal'. Here's a link to their website: http://www.tvears.com/ (http://www.tvears.com/). Not cheap but almost a necessity if you're SSD.
My wife uses the tactic of waving her arms and calling me in large stores to compensate for my lack of directional hearing. Otherwise, I have to complete a 360-degree turn to locate her and sometimes, if I don't notice her on the turn, I'll have to do it again!
Noisy restaurants are a problem. You have to seek an out-of-the-way table or ask your dining partner to 'speak up' while you lean into them in order to hear them. Better yet, avoid noisy restaurants, which is not always possible i.e. wedding receptions, parties, etc. People who naturally talk softly (male and female) can be a challenge.
I occasionally have to attend meetings and if there are no more than 8 or 10 people present, I'm O.K. At a big table with 20 or more people, I struggle to hear, especially if people talk over each other, as they sometimes will. You do the best you can. So far, this hasn't been an issue that has given me a big problem.
I was SSD years prior to my AN diagnosis so I've adjusted and learned to cope. Although most of my good friends know I'm SSD, the majority of my acquaintances don't realize that I'm deaf in one ear. I think I cope fairly well. SSD is a handicap but not a disability. As Sue mentioned, many AN patients with SSD utilize a BAHA or other hearing aid. I haven't but those who have are usually delighted with them, so this should definitely be an option for you.
Jim
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Yes, noisy restaurants are a real pain! Having SSD or nearly so, can ruin things like concerts, going to arenas, plays, musicals, theaters, convention centers, etc. I mean it has to be something I really want to see! I haven't found ear plugs that work for me yet. The foam ones you get don't seem to stay in my ear. I must not know how to put them in correctly. Or maybe it's not SSD so much as the tinnitus, because that just gets louder and louder and it can drive you nuts!! But, it's a matter of hanging in there with what you want to do, I guess.
Anyway, it's just one of the crosses we have to bear, and while not the most fun thing in the world to have to deal with, it certainly doesn't even come close to the worse things we could have to deal with.
Sue in Vancouver USA
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Mike,
I think the worst thing about SSD is the no directional hearing! After three years my family and most of my friends still don't get it. Unlike Jim, I can't tolerate loud TV's. My hearing is perfect on the left side and very keen. I don't need people to shout or speak louder for me to hear them....just be standing on my left side. My hearing was perfect in both ears prior to the surgery so it came as a huge shock to my system, even though I thought I had prepared myself for it.
Good luck!
Brenda
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Thanks all for the insight. I got some unexpected information from my ENT this afternoon and I must say I feel a bit embarrassed. He told me that I do not have an AN and that I just have an ear "that sucks". I told him about the MRI scans that I compared mine to and he said there are so many different levels that it's hard to discern what is what (although some I compared to looked almost exactly the same). I'm an educated person with multiple advanced degrees but wow do I feel a bit foolish. So now I have conflicting emotions:
1) I'm still going to get a second opinion (likely from House - thank all of you for the suggestion)
2) I'm still going deaf in my right ear so I expect my SSD will come eventually although perhaps not due to surgery
3) I feel a sort of kinship to all of you on this forum despite only being a part of it for a few days
4) I feel some guilt that you all have been so kind with your time and insights and that I don't want to impose on this forum if I really don't have an AN
5) Most importantly - as far as I can tell there are some really happy people here despite the trauma and life adjustments you've had to deal with. How refreshing.
My sincerest thanks.
Mike.
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Hi Mike
I am a newbie - and had the same feelings as you. I was lucky though - and get to stay with my little babe of an AN ;)
I admit I was almost relieved that I had an AN because it gives an explanation to the mild hearing loss and the ringing/fullness in the ear - if I didn't have an AN, then no one would have an explanation (alas, where you are standing).
I agree - people here are tremendously supportive and ready to give info (even if my questions are silly!)
Congrats, I guess - and good luck finding a cause for that funky ear.
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Mike~
I guess I am the weird one out - I have SSD and have ever since my AN surgery in 1995 at age 25. Even though it is a pain, and it definitely took some getting used to, I don't think twice about it. I go to concerts, plays, listen to music (even an iPod), go to the movies, watch TV with my family, sing at church ,whatever...is it what it used to be? NO, but there is a life to live and I am going to live it to the absolute fullest that I can! ;) The most helpful thing I have found lately is the little quick replay button on the satelite remote (do you know what I am talking about?) - I use it all the time when I miss a line - doesn't seem to bother the family (I don't even use CC or anything wlse when watching TV). the directional thing is probably the MOST bothersome, but not as huge a problem anymore since my girlies are a bit older...when they were babies & had crawled off to another room and then cried - I would just stand in the middle of the house or run room to room!! Whispering and learning which was the "good" ear - especially for the little ones is a challenge, but they get it eventually! How many times have I said, "That's Mommy's ear that doesn't work!!"??
Don't be a stranger even if you don't have an AN - while we are all overjoyed that you don't have that...we'll still be your friends!! We have some jolly good times around here!
K
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My TransEar comes in handy at times. But I live in a high heat and humidity climate. Even a hearing aid can make a person sweat more. The TransEar works very well and when I wear it, I enjoy it. If I worked outside my home full time I'd need to wear it every day and I could do that.
I had a long conversation with a young woman who has cochlear implants. We shared the same round top table (8 ladies) at the luncheon. She sat exactly opposite me 6 feet away all through the luncheon. She was quite an inspiration! She lip reads extremely well and uses two digital hearing aids. I realized that she and I lip read well enough to appear normal. I can settle for that.
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Kabe -
I agree with everyone else's insight on SSD. The problems and experiences they are telling you about are all things I have experienced.
If you do end up SSD - through an AN or something else - keep in mind that some people adjust to it just fine (like Kay and Jim).
Others of us - like me - don't adjust so well, but as you know there are options. I chose the BAHA and if I've said it once, I've said it a million times - I absolutely love it.
Most TransEar users feel the same way about their choice.
SSD options, like AN treatment options, are personal choices. Researching your options is a great idea and in the end you'll do what is right for you.
As Kay said, even if you don't have an AN you're welcome here any time; don't hesitate to keep joining us.
Jan
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Kabe/Mike,
I think you're smart to consider House for a second opinion re: your non-AN diagnosis. Hopefully they can shed a bit more light on your condition other than just "having an ear that sucks." Good luck as you continue to research possible SSD options. I'm happy with my BAHA Intenso.
Catherine (jerseyGirl2)
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Thank you for sharing those valuable insights. It would be nice to know the cause of my hearing loss. The doc and I were pretty suspicious that it was an AN. The symptoms all fit. I've considered the possibility that there might have been a mix up and the doc read the wrong report/scan. I'm going to see him again to go over this in person and to talk about hearing aid options etc... In the meantime, I'm going to send my scan/audiology report to House. Regardless of the cause, I am certainly glad I found this wonderful forum with so many interesting and kind people!
Mike.
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Mike -
we're glad you found us, too ;D
Jan
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Hi Mike, I love music, too. My good ear did not hear accurately for a few weeks after translab. surgery. But then it seemed to settle down and sounds and tones I knew before surgery were pretty normal again. This included my grand piano which at first seemed out of tune. Normal tones resumed in about four weeks. I don't even notice the difference now with SSD. I can also sing along with the piano and don't think twice about it. My husband ordered me a ''Listen Up" to use for things like church, guest speakers, meetings at work (school)....I found a monostereo earphone on the web that fits perfectly in the Listen Up so everything routes to the good ear. I've had really good luck with that. TV is not a problem for me anymore though at first I needed it louder. We installed an extender on our doorbell so that I can hear it in more locations in the house. I had to turn up all the phones. Personally, I don't find SSD to be that distracting though I am not returning to work until after the new year. My classroom full of children will be the real test.
Think positive and plan on the good things being a part of your experience. You will surprise yourself.
Good luck and blessings to you. SUE
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On a humorous note.....as I was writing to you, Mike, about SSD I began to hear the sleet on my roof from the beginning of the huge Midwestern storm. Some sounds will never escape us! Happy winter!
SUE
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Mike,
Its actually not that bad. There is life after SSD. I was in the same situation as you last year. I'm a bigtime videophile. The week before my Retro, I went up to our theater room and sat down to watch a movie in full Dolby pro logic with all the sound affects. I resigned to the fact, I would never watch a movie the same again or listen to music in full stereo. No, its been a year since my surgery and to be honest. Its no big deal.
You will find yourself strategically sitting at the ends of the table at get togethers. Loud public gatherings are definitely harder but not impossible. If your cognisent of your environment, you can easily tell where the voice or person is. Is when you are aware and a sound comes at you, it just takes a second longer to scan for the sound.
Bottom, SSD wasn't life ending. And Damn the Elevator chime...it will be your nemesis. :D
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And Damn the Elevator chime...it will be your nemesis. :D
I actually laughed out loud on this one.. It's SO true! I can't tell you how many times I've tried to walk into a CLOSED elevator door because I thought for sure it was going to open (only to find out it was the other one). This is a priceless comment..
Kudos,
Brian
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Thank you all for your insight. I've already been doing many of things - strategic table sitting etc... Since I apparently do not have an AN my SSD is coming much more slowly. I'm sure many of you have thought about "which sense could you live most easily without". For me SSD would fall into that category. It's certainly not debilitating and really from what you all have described, amounts to more of an inconvenience (I don't mean to minimize it, however). A sense of humor is very helpful I think. I've laughing at myself for 43 years. Don't think that will ever stop :). The elevator comment had me on the floor. That's hilarious.
Thanks all.
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Waypoint -
the elevator comment IS priceless :D
Even with my BAHA I can still relate to that one ;D
Jan
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Ah, the dreaded elevator "ding!". >:(
Mike, if you do wind up with SSD from your "ear that sucks" (that's a good medical diagnosis!) - I'll warn you about another potentially annoying situation: buying produce in the grocery store. I know, you're thinking "how can that be a problem?" Well, I'll tell you what happened to me: I'm not very tall, so to try to reach the stuff that's on the back upper shelf of the produce area requires me to really reach and practically climb into the produce bin. Our supermarket has this lovely little feature to keep the food fresh - it begins to thunder to warn you that the water sprayers are going to come on to spray down the produce with COLD water. I was leaning in with my deaf side and didn't hear the thunder. Imagine the looks I got (and the laughter from my 5 year old) as I got drenched - my sleeve, my hair, my face - with ice cold water. :o
I'm sure everyone in the area got a good laugh at my expense - and fortunately, I didn't have my BAHA at the time, so I didn't have to worry about that getting hosed down. When I got to the checkout line, the cashier just looked at me funny - to which I asked if it would be too much to ask that they throw a little lightning in there along with the thunder!
Still no lightning, but I am much more careful when buying veggies now. I look more like I'm diffusing a bomb than shopping for broccoli!
On a positive note, I am like Kay - I've been to concerts, movies, etc. Although I might have to develop some seating strategies, it's not that difficult to adapt - especially if it's something you really enjoy doing. I don't, however, sing at church and will only do so when the entire congregation is completely deaf so they won't be able to hear me! :D
Lori
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Lori thank you for that. That is priceless. All in the name of produce!!
Mike.
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Mike -
Just thought I'd put in my two cents even though it's pretty much all been said. On Christmas day I will be exactly 5 months post-op -- where did the time go? Although at the time of diagnosis my hearing was pretty good and I had 80% speech discrimination, I had two huge drops in hearing about a one and a half months prior to my surgery and went down to 24% speech discrimination. Although it was initiall;y very upsetting (I was scheduled for middle fossa in an attempt to save my hearing) I have gotten used to being SSD to a very large extent, although I do find it annoying at times. My hearing in my left ear is excellent and unless someone is completely off to my my right I can usually hear them. I am scheduled for BAHA surgery January 5 and can hardly wait to get the processor (that will take another three months). I'm really looking forward to hearing better again.
Wendy
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Thanks Wendy. I am going to schedule another appt to review hearing aid options. I suppose mine will be more trial and error. My speech discrimination is at 64% currently. I have not notice any sudden drops - just been gradual. Obviously BAHA is not for me. Although it certainly sounds like everyone who has had it done finds it immensely helpful. Glad your getting yours soon! Like I've always said this really is just an inconvenience for me. It could be so much worse. I have so much I'm thankful for.
Thanks again and Happy Holidays!
Mike.
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I wanted to add something that I was not prepared for.
I have lost the ability to sense when someone is right beside me. I go to turn not thinking anyone is there and wham right into them. I guess we hear people breathe or rustle around. Now I don't know if someone is standing on my deaf side. I am adjusting I turn and look first.
The new me...yipeee. Oh and I can't tell you how many dirty looks I have gotten in the grocery store when I just turn and walk like there is not another soul in the store and bang right into someone. Couple that with not great balance and yep they think I have been drinking.
Michelle :o
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Howdy,
I have recently become SSD and I am still not use to it. However, I agree with everyone else but I must admit I am still getting use to it. Someday I feel that I will never get use to it but I come to this forum and it gives me hope.
Roger
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Roger -
I hope you do get used to being SSD; lots of people do. Give it some more time, but if you find you just can't get used to it, there is no shame in admitting that.
I found that I never got used to being SSD - in fact it made me angry and very depressed - which led to my BAHA. The BAHA isn't for everyone, but IMO it's a wonderful option. People who have the TransEar also speak very highly of it. So remember there are options - if you decide SSD isn't something you've gotten used to.
Best of luck,
Jan
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Hi Jan,
Glad to hear from you. I know I need to give it more time my wife tells me that all the time but, I find myself with less patience. But, like I said you and this forum give me hope.
Roger
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Glad you have hope; wish I had patience ::) LOL
Jan
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I have SSD for ten years now, originally misdiagnosed as a viral infection, I did have a MRI scan at the time but nothing showed up. Though everyone now believe that was when the AN reared its little head.
You feel a bit hard done by buying a full dolby surround sound system, but I will be installing some buttkickers to the system to make up for the lack of stereo. I just discovered a little adapter that plugs into your mp3 headphones so all the sound on both channels comes through one earphone, though you have to wear both ear buds because some poor unsuspecting chap next to you could be chatting away and you wouldn't have a clue. its quite handy if they are a total bore.
In wedding etc when I sit down I tell the person on my deaf side they will have excuse me if I cant hear them and the wedding invite makes a handy sound deflector and can be rolled into a ear trumpet.
Conversation in noisy environments are a real pain and I avoid them. My days of hitting the dance floor are long over but saw the other day silent raves, everyone is handed a wireless set of headphones and dance away to the dj music, but when you go for a drink at the bar take off the headphones and its total silence, very strange and could be adapted for the next AN convention?
Alot of people say you have to be extra careful when driving, but these days in hermetically sealed, double glazed cars with the stereo on, even normal eared people would be hard pushed to tell where the outside honk is coming from.
When ever anyone yells in the house to come over they all say "come here to the living room, study" etc. because I haven't a clue where the yell came from.
I am booked for the surgery in a few weeks time and was asked if i would consider a hearing aid, and turned it down, as I am quite happy with the current SSD set up, why add another layer of potential complications, plus I always shave my hair so a box stuck to my bald head will really make people assume I am some sort of retard.
So for me at least does not bother me at all, and I love music and movies, Oh always leave your mobile phone in the same place in the house, trying to find a missing ringing phone is a challenge.
Rick
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I always shave my hair so a box stuck to my bald head will really make people assume I am some sort of retard.
:o :o :o :o :o
Rick -
I'm sure this is just an unfortunate choice of words to convey your feeling that the BAHA just isn't for you - which is perfectly understandable, since it's not for everyone - but I resemble that remark ;)
While I am not bald, I do wear my hair short and at times my BAHA is quite noticeable. I've never once feared that someone would "assume I am some sort of retard". I'm currently 47 years old and I'm aware that there are some really shallow people in the world; I don't let it bother me. I've always figured if someone had a problem with a "box stuck to my head" that was their problem, not mine. As long as it helps me hear better, I could care less what people think.
It's wonderful that you are comfortable with being SSD and don't feel a need for a hearing aid. There are lot of AN patients who share your comfort level and I think that's great.
The mono plug adaptor for the iPod is really cool - I have one myself and I love it ;D It's cheap, too, which was a pleasant surprise for me.
Good luck with your surgery,
Jan
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Nick,
I agree with your assessment that you've become well adjusted to your SSD over the years and that a BAHA, TransEar, or other device might not provide a significant enough improvement in your quality of life to warrant your getting one.
But I do hope that your comment about "a box stuck to [your] bald head" won't discourage anyone from investigating the BAHA. I wear my hair fairly short and have no problem concealing my Intenso (which is larger than the Divino model); the brown shade of the processor is a great match with the color of my hair. I don't think very many people are even aware that I'm wearing this device and I'm pretty sure that even if they noticed it they wouldn't think that I'm mentally impaired.
Catherine (JerseyGirl2)
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I always shave my hair so a box stuck to my bald head will really make people assume I am some sort of retard.
:o :o :o :o :o
Nick -
I'm sure this is just an unfortunate choice of words to convey your feeling that the BAHA just isn't for you - which is perfectly understandable, since it's not for everyone - but I resemble that remark ;)
While I am not bald, I do wear my hair short and at times my BAHA is quite noticeable. I've never once feared that someone would "assume I am some sort of retard". I'm currently 47 years old and I'm aware that there are some really shallow people in the world; I don't let it bother me. I've always figured if someone had a problem with a "box stuck to my head" that was their problem, not mine. As long as it helps me hear better, I could care less what people think.
It's wonderful that you are comfortable with being SSD and don't feel a need for a hearing aid. There are lot of AN patients who share your comfort level and I think that's great.
The mono plug adaptor for the iPod is really cool - I have one myself and I love it ;D It's cheap, too, which was a pleasant surprise for me.
Good luck with your surgery,
Jan
Jan,
No offence meant, it was more of a tongue in cheek comment about the kind of world we live in
Rick
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I would just add that A) sitting around saying "What" a lot is not exactly cool - I should know, I do it a lot - and B) in this day and age of I-Pods and Blackberries and cell-phone headsets, having a BAHA actually attached to your head is one up on the competition and very cool, in a Star Trek cyborg kind of way. 8)
Steve
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Rick -
I know you meant no offense, but I felt I couldn't not comment on this.
It reminded me of the time, in the not so distant past, when another forumite was posting about her concerns regarding facial paralysis if she chose surgery and said she couldn't imagine a life of looking like a freak. :o
Well, a lot of my very good friends on this forum live with facial paralysis every day - and I have nothing but the utmost respect for them. And I also don't consider them freaks.
I'm not a moderator (thank goodness) and I don't make the rules, I just want to make sure we're all conscious of each other's situations - and feelings.
So, now that I'm done "slapping your hand", let me apologize for calling you Nick rather than Rick in my prior post.
Jane - er, make that Jan ;D
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Since we are kind of on the subject, please let me share something with everyone that I had never thought of before until my friend pointed it out to me. She has a little boy (just turned 8) with Down syndrome and she is now very sensitive to the word "retard" (or retarded) when people use it as slang or referring to acts of stupidity. I can see, now, how this could be very upsetting to someone (especially a mother) who lives with that reality everyday. It just made me more aware of how truly insesitive I can be without thinking about it. I know that NOTHING was meant by it here, I just wanted to point that out. I think that WE (as an AN group) would like for things to be a little more "noticed" in respect to our feelings & limitations and if I can spread the news about something that affects another group of people, I like to think that I did my part. I know that I try to be more considerate of others now that I know that that is hurtful to so many.
Just a thought...
K
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I'm not a moderator (thank goodness) and I don't make the rules,
I am a moderator, but I don't make the rules either. I assume that if anyone wanted the post edited or removed, they would let one of the moderators know.
There is a real issue of how you look with a hearing aid or BAHA, just as it is not merely vain to be concerned about how your smile looks after surgery. Sometimes that brings out some of our childhood playground language - at least that's how I think of it. It is unfortunate when it slips out, but with both Rick here and the case that Jan mentioned, the slip was quickly acknowledged - no harm, no foul. In some ways it may be good to let it come up now and then, so we can all get a little awareness refresher, like Kaybo just gave us.
Steve
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First of all Happy New Year to all of you.
I found this forum late in the year when I needed answers and support. My oh my how valuable your collective insight has been to me - REGARDLESS OF HEARING ISSUES. I cannot pretend to understand what you all have been through as, apparently I don't have an AN. But I am going deaf in one ear and can empathize at least somewhat. As for the other issues associated with hearing aids (of all sorts), I don't know what life will be like but I do know I'm for it! I don't care who LOOKS at my right ear. I care about all the people who I can, and still will converse with, including my 4 year old son. Nothing better than that IMHO.
God Bless all of you and I wish you nothing but the best in 2009!
Mike.
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In some ways it may be good to let it come up now and then, so we can all get a little awareness refresher, like Kaybo just gave us.
Steve
I know its a bit off topic but its an very interesting point, even these days the term disabled or handicap is seen as having negative connotations a more appropriate description would be able bodied and non able bodied, I have even heard the term "people requiring technical care" as a way of avoiding the political hot potato.
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Hi Rick and Jan and all,
I am a moderator and I do crack whip around here (as many know). I appreciate a "tongue in cheek" but as many here know, I am an appointed member (by my town) to sit on a commission for the disabled that includes assisting those with physical, emotional and mental challenges. Regardless of how this was noted, please refrain from such use of wording as to not have others take offense (ie: they may have a mentally challenged family member, etc). I appreciate your assitance with this request.
BTW, I am deemed disabled and am not seen in a negative light... and would hope that others also see us as a very viable, contributing member of any community, whether here online or in the towns/cities that we live and work.
Thanks for understanding.
Now, let's all get back on the original topic at hand.
Thanks.
Phyl
I always shave my hair so a box stuck to my bald head will really make people assume I am some sort of retard.
:o :o :o :o :o
Rick -
I'm sure this is just an unfortunate choice of words to convey your feeling that the BAHA just isn't for you - which is perfectly understandable, since it's not for everyone - but I resemble that remark ;)
While I am not bald, I do wear my hair short and at times my BAHA is quite noticeable. I've never once feared that someone would "assume I am some sort of retard". I'm currently 47 years old and I'm aware that there are some really shallow people in the world; I don't let it bother me. I've always figured if someone had a problem with a "box stuck to my head" that was their problem, not mine. As long as it helps me hear better, I could care less what people think.
It's wonderful that you are comfortable with being SSD and don't feel a need for a hearing aid. There are lot of AN patients who share your comfort level and I think that's great.
The mono plug adaptor for the iPod is really cool - I have one myself and I love it ;D It's cheap, too, which was a pleasant surprise for me.
Good luck with your surgery,
Jan
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Mike -
I'm glad to hear you don't have an AN, but I'm sorry to hear about your increasing hearing loss.
I just wanted to say that if you ever do become 100% deaf in your "bad" ear, the BAHA would be an option for you. You don't have to be an AN patient to use one; the only "requirement" is that you are unilaterally deaf. How you became unilaterally deaf is irrelevant.
While many decide the BAHA is not for them, for various personal reasons, I've found it's a wonderful option for me - and it may be for you. So keep it in mind as life goes on.
Happy New Year to you,
Jan
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I'm SSD and one of those who have chosen not to use a BAHA or other hearing aid. I consider that a personal choice, just as it is for AN patients who employ a hearing aid of any kind. I respect other people's personal choices as I assume my choices will be respected. I don't believe that anyone needs to explain their reasons for these kinds of personal decisions that basically affect only the individual. However, I think it should be obvious that anyone who chooses not to employ a BAHA - or any other kind of hearing aid - doesn't feel they require the help it provides. That would be me. :)
Using sensitive language on public internet forums should be self-evident, especially when dealing with issues that may involve the physical deficits of others. While I think we sometimes go a bit too far in scrubbing our language clean of any word or phrase that might even hint at having a negative connotation, sometimes removing effectual communication along with it, I would prefer to err on the side of caution and propriety when dealing with these types of issues related to acoustic neuromas. That noted, to err is human and, unfortunately, the propensity for taking offense and making negative judgments against others - no matter the specific context - is, too. I think those of us who may be interested have expressed our feelings on this issue of applying negative imagery and labels to others as it relates to BAHA (and anything else, apparently). I trust we've learned what may give offense to others by discussing it and can take what we've learned and move on. I'm ready. :)
Jim
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I knew I wasn't the only one who had this problem! :D
(http://i273.photobucket.com/albums/jj237/lor1parrot/garfield.jpg)
Lori
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I thought I'd chime in here quickly on the SSD issue. I am almost 8 mo post op and had absolutely no hearing issues prior to my translab. I was a wreck with worry about it. I went from hearing 100% in both ears to hearing 100% in one ear. To be perfectly honest I have no idea what I was worried about. I hear wonderfully with one ear. So much so that I am hesitant to have the BAHA, however, I am going to get it as insurance is covering it and not sure what the coverage would be down the road should I decide to pursue it later in life.
I am a musical person and very much enjoy concerts, music, (learning) playing bass, movies, you name it.....and really overall the SSD hasn't posed an issue. I still, even with SSD, think my husband watches the tv louder than I can handle. :) I also waitress/bartend on weekends at a busy sports bar that is LOUD...and sometimes I have to ask customers to repeat or speak up....but overall not often. Maybe I'm and exception to the difficulties SSD poses to some.
However, my children are learning to not whisper into my "broken" ear as they call it :)
And I have my own "wet" embarassing story for Lori......While sorting laundry last week, both washer and dryer running, my son came up behind me to give me a hug and wrapped his little arms around my waist.....I peed my pants, literally, he startled me so badly.....Took me a few to collect myself and get my hear rate down. Needless to say there was a few more items to add to the washer :) It's when I least expect it that someone comes up beside me.
However, the upside is, I sleep on my "good" ear....so I sleep wonderfully :) :)
Melissa
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Melissa,
You made me laugh and I really needed it today. Had some bad news, one of my closest friends may have lung cancer. CT scan tomorrow, instead of having her rotator cuff operate on.
I hate it when my sons sneak up on me. I've jumped and screamed but never peed my pants, but with me anything could happen.
Thanks so much for the laugh,
Anne Marie
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Hi,
I'm coming at this from a pre-op SSD perspective.
Like Melissa I cope well with mine but I can actually 'hear' whisperings in my AN ear in a relatively quiet room. In fact until I had my recent audiogram (which 'spiked' a pain and caused my tinnitus to roar and provide a cacophony of sounds, the like of which I didn't even dream could exist within a head before!) I have managed very well generally in noisy environments - now the tinnitus soars and is quite distracting at the moment and is also bad when I speak (Oh dear!).
So I would say SSD is probably better managed with a quiet brain than a noisy one!
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Anne Marie,
So sorry to hear abotu your friend. We had a close family friend that had the same situation a few months back. Unfortunatley the outcome was not good. You and your friend are in my prayers.
As far as tinnitus goes.....Mine acts up when I am in loud situations......mostly when my kids are running around the house at mach 10 and screeching :) I try to avoid situations where there are loud noises....TV, movies, music is not so bad...but if my husband has things like the power tools, or lawn mower and such going....my tinnitus is much worse.
Melissa
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Melissa -
have you tried the BAHA demo yet?
I, too, thought I was doing great being SSD - until I tried the demo and reminded myself of what I was missing. The BAHA is definitely not for everyone, but IMO if you haven't tried the demo yet, you should do so before deciding on surgery or not.
Anne Marie -
sorry to hear about your friend. I'll keep her in my prayers. Kisses to her :-*
Jan
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Melissa,
Thanks for the funny story. We all need that and it sounds like you really need that. You and your friend are in my prayers. I hope it's not a positive diagnosis but if it is, his/her life is certainly not over. We're winning the battle against all forms of cancer not more than ever. Keep the faith and know that all here in this forum are hoping for a good outcome.
Thanks.
Mike.
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Anne Marie,
I'm hoping for good news for your friend.
Melissa - it's a good thing you were doing laundry anyway! :D
Lori
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I'm praying for some good news on your friend also.
Sadly, I don't have any "wet" stories to share. I guess I shoulld be thankful for small miracles. :)
Regards,
Brian