What is SSD really like?

[leapyrtwins]

Glad you have hope; wish I had patience    LOL

Jan

[QRM]

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

[leapyrtwins]

I always shave my hair so a box stuck to my bald head will really make people assume I am some sort of retard.

 

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    It's cheap, too, which was a pleasant surprise for me.

Good luck with your surgery,

Jan

[JerseyGirl2]

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)

[QRM]

I always shave my hair so a box stuck to my bald head will really make people assume I am some sort of retard.

 

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    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

[sgerrard]

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. 

Steve

[leapyrtwins]

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. 

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 

[Kaybo]

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 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

[sgerrard]

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

[Kabe]

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.

[QRM]

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.

[ppearl214]

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.

 

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    It's cheap, too, which was a pleasant surprise for me.

Good luck with your surgery,

Jan

[leapyrtwins]

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

[Jim Scott]

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

[lori67]

I knew I wasn't the only one who had this problem!   







Lori