URGENT help needed re CHALLENGES of SSD

[Jeepers]

Hi all,

I am looking for specific instances regarding the challenges of SSD ... social, recreational, professional and personal, with emphasis on inability to determine the source of a sound and SAFETY. For instance, adding to or expanding on:

(1) Living alone, might not hear smoke alarm, storm warnings
(2) Running/walking/biking - cannot determine direction of horns, alarms, whistles, etc.
(3) Meetings
(4) Social gatherings

I'm also interested in how SSD might have caused you to withdraw from certain activities or situations.

Since I am only 6 wks post-op, I am still new to the adjustments of SSD. My insurance is denying the Baha implant on the premise it is a hearing aid and therefore, excluded from coverage. Of course I am appealing. I am familiar with the coclear implant argument and am still waiting to hear if they cover them, which would reinforce my argument against their denial.

We have also already explained it is NOT a hearing aid
That it has been coded as a prosthetic
My policy does cover prosthetic devices, special appliances and surgical implants when:
... they are required to replace all or part of the funtion of a non-functioning or malfunctioning organ or tissue

Seems pretty clear cut, huh? Not so, says my insurance ...

Your input would be appreciated!

Thanks!

[krbonner]

I don't know if this will help your claim at all (though I do hope it's successful!) but I can't hear the smoke detector down the hall when I'm sleeping in my room on my good ear.  We solved this by installing an additional smoke detector in our bedroom.

Good luck!
Katie

[NancyMc]

Honestly, Dave and I were discussing this very thing this morning . . .
HEALTH INSURANCE COMPANIES ARE BAD FOR OUR HEALTH!!!
He has been doing battle with BCBS about a routine preventative test that they want to bill as surgery!  His stress level is through the roof.

Anyway, regarding SSD, I am in the same boat.  I avoid social situations, especially restaurants with their reflective surfaces (The brunch at Maxwell's was very difficult for me.); I almost got hit by a truck in Edinburgh; I can never tell which door my dog is barking at to come in and have to run around until I find him looking in at me.
I've been going SSD for eight years, but after surgery, there was no sensation whatsoever on my right side, no awareness of sound waves.
I have resigned myself to it and have withdrawn to some degree, but I have to just not care that I am not all there or I will be frustrated to the point of despair.
Just take care to protect your remaining hearing.
Good luck with your BAHA appeal.  I'm hoping to do the same.
Nancy

[nancyann]

Hi Jeepers:  SSD is challenging at 1st, but you can get use to it.  My surgery was >3 years ago.
When I'm driving & hear alarms,  I slow down & keep looking all around until I locate the ambulance/fire truck/police.
Only several times in 3 years did I not hear my alarm clock going off because I was sleeping on my good ear, & was a little late to work (my supervisor is very understanding).
I stay away from noisy restaurants, I also have a musicians plug that decreases 15 decibels.
I am exempt from large meetings at work - I had my PCP write a note because I can't take all the talking at once (it makes me anxious/agitated).
I try to keep my life simple,  it works for me !

Always good thoughts, Nancy

[Kaybo]

Jeepers~
I agree with Nancy that you do become more adjusted to it as time go on - I am over 13 years out now and yes, there are challenges, but for the most part I haven't changed one thing - except positioning myself where my good ear is to my best advantage.  I certainly have not altered any social events or settings.  However, that is just me - I think that it is mostly due to the fact that I became SSD when I was 25 and I never gave any thought to the fact that I would "miss anything" just because I couldn't hear - I like to be in on the action!!    Also, I have 3 young children and so "quiet environment" is not something we are familiar with at our house!!  I have found that as I get older, I am less tolerant of certain situations, but I don't think it has anything to do with the SSD and everything to do with me becoming an old fart!!  I have a Shake Awake (I just have the travel alarm & it works fine!) that I put under my pillow when Dave is not here to wake me up.  My friend got it for me when Dave was traveling a lot with his job and I was getting NO sleep b/c I was so afraid I would oversleep and not get the girlies ready for school.  It just vibrates you pillow to wake you up.  Also, we have a NOAA radio and it is across the room but it definitely wakes me when it goes off- I can't even imagine if it were right on my bedside table!!  We have a fairly large house (all one level, though) and I can tell when it goes off (even if I am in the other room) & then come back to the bedroom to listen to the message.  I don't know if this helped at all...I would be happy to chat with you or answer any specific questions you have if you want to PM me with them or with your number & I will call you!

K 

[JerseyGirl2]

Jeepers,

I think many, if not most, of us who are BAHA users received a "denied" response from our health insurance carriers on the first attempt, so please don't feel discouraged. Hopefully your appeal should do the trick -- emphasize the "it's a prosthetic, not a hearing aid" argument and also the fact that Medicare coverage now includes the BAHA. I bet you'll be successful -- sure do hope so! The BAHA is a big help in coping with SSD.

Catherine (JerseyGirl 2)

[Kathy M]

Jeepers,

I am in a position that requires lots of meetings (both facilitation and participation) and I really struggle with SSD.  I have bowed out of moderating a panel discussion at an upcoming conference because I didn't want to look like an idiot trying to locate the person who wants to ask a question...just not ready to put myself in that situation yet.

I am finding myself backing out of social situations (most recently, retirement parties) because it seems that no matter where I sit, I feel completely alone (even though my friends really try their best).  All the talking makes it impossible to hear anything and asking people to constantly repeat themselves is embarrassing.

At work, when I'm on the phone in my office, people come in to ask me a question thinking that I can read lips or hear them somehow...which never happens!

Conference calls (especially ones where there are multiple folks in one room with me and one person on the phone) are infuriating when the people in the room put the phone on mute and have a big group discussion with everyone talking at once!!!  Can't hear anything, makes me very anxious, and I end up just keeping quiet.

I'm only SSD 9 months, so I know I will get better used to this, but it is a bit of a slow go for me.  At home I'm doing much better. I'm much more in control and my family is far more in tune to what I need and my limitations.  It's unrealistic for me to expect these things at work!

Good Luck on your appeal!!!!  I am really considering some kind of device after I recover completely.....

Take good care,

Kathy

[leapyrtwins]

Jeepers -

Catherine is correct.  While my insurance company didn't deny my first request for BAHA coverage they took almost 6 months to approve it - when it usually takes 4 to 6 weeks! Seems they never received the request   they weren't sure why I needed it, how I became SSD - even though they paid for the AN surgery   , etc.  I forget all the things they tried to pull.  

Persistence is key here.  Education is also - not many insurance company reps know what a BAHA is or what it's used for.  Believe it or not, some medical people don't either - my kids' pediatrician was amazed by the science involved the day I showed him mine.

Kaybo and Nancyann are correct also - lots of people adjust to life with SSD and are quite happy.  It all depends on the person.

I was miserable being SSD - absolutely hated it - as Dr. Battista would tell you if you asked him.  It made me - and my children - very frustrated.  I hated it in a personal setting - couldn't hear my kids.  I'd say what, they'd repeat, I say what again, they'd repeat - after about 5 sequences of this, they'd say never mind and walk away.  I missed so much conversation with them!

At work I hated it also - meetings with colleagues where I couldn't hear half of what was being said; conversations with my boss or staff members where they were on my "bad" side; numerous conversations where I'd find myself just nodding and saying yes or smiling and I'd get the weirdest looks because it was an inappropriate response to what was being said.  I also couldn't stand having to turn my body towards someone every time I wanted to hear them.

I was in a perpetual bad mood for the 9 months pre BAHA.  I felt old.  I was grumpy    It also became clear to me, the day my insurance company approved the BAHA, that I was depressed.  When I was finally told it would be covered, it felt like a giant black cloud was lifted off of me.  The very first thing I did was contact Dr. Battista and schedule my surgery.  I felt like I'd won the lottery!  Once I got my Divino, I felt like I'd won the lottery a second time!

I've loved my BAHA from day one and consider it to be one of the best things I've ever done.  I can't imagine my life without it.

As Catherine said, don't get discouraged.  Keep your chin up!

Jan

[leapyrtwins]

Kathy -

I just realized, by reading your "tag line", that you are a patient of Dr. Pensak's. 

He did a wonderful talk at the symposium about hearing alternatives and he seems to be a big advocator of the BAHA.  If you get to the point where you decide to pursue that option, I'm sure he'll be a big help.

Jan

[Jeepers]

Thanks for your responses so far.   

Kaybo & Nancy - while I would expect that one might eventually adapt, at least in some areas,

for my appeal, I'm looking for problems with my safety and quality of life that the insurance company should take into consideration. As with any prosthetic, an individual can "get used" to being disabled ... I'm trying to convince the IC otherwise.

You all bring up some very good points ... and welcome any more you might have ...

[leapyrtwins]

Safety issues - almost forgot.

While I was in San Diego I went sight seeing with some colleagues and we decided to take the trolley to Old Town.  I had removed my Divino and left it in my room; the humidity there was unGodly and I had forgotten to take my little bottle of beads that Cochlear gives you to "dry out" your processor.

Anyway, we were on one of the sides of the tracks and we needed to board the trolley on the opposite side.  So I watched one trolley pass in front of me and then bravely started to cross to the other side.  Naturally I didn't think to look both ways and I didn't hear the incoming trolley speeding down the tracks on my "bad" side.  By the time I heard my colleagues shouting to me the trolley driver was laying on his horn big time.  I jumped back just in time and we all had a huge laugh, but in hindsight the prospect of being flattened by a trolley isn't a pretty picture.

 

[oHIo]

I hate to be the negative one of the group, but there are some insurance companies, who absolutely will not cover a BAHA no matter how many times or what angle you use to appeal.  Mine happens to be one of them. Some companies, deep in their secret archives of policies, have specifice exclusions written regarding the BAHA.  They may cover cochlear implants, but not the BAHA.  I've had letters from doctors, the Medicare information, etc. and bottom line is, it it not covered by my insurance company.  When I talked to the rep from Cochlear, she mentioned my insurance specifically as one that no one had ever won an appeal. 

That said, I wouldn't give in so easily and would fight it until the end of your appeal process.  I personally hate being SSD.  I am losing some of my hearing on my "good" side, so matters become even more complicated.  People carry on complete conversations with me, not realizing the conversation is one sided until I don't answer.  When people try to carry on a coversation with heavy background noise, I have to get up close to them or just tell them to talk to me later.  When I am on the phone for work, I can hear nothing out of my deaf ear, including the fire alarm, code alarm, and important instructions people just "know" they've told me, in spite of me repeatedly telling them I hear nothing out of that ear, so don't waste your breath. 

Feel free to PM me.  I wonder if we have the same insurance company.  I also tried the prosthetic device angle but ultimately, the insurance company didn't see it that way. 

[Jim Scott]

Jeepers ~

Although I wouldn't wish unilateral deafness on anyone, I'm almost embarrassed to admit (here) that I cope quite well with being SSD.  I've learned to subtly turn my 'good ear' toward someone speaking to me and in a group setting I position myself so that I can (usually) hear everyone.  Noisy places (especially restaurants) are a challenge but I can usually muddle through by only talking to the person closest to me.  There are myriad ways of coping - but not everything works for everyone in every situation.  In those cases, the BAHA can become a necessity, so I always recommend it for those who have basically insurmountable problems with being SSD. 

I believe my very gradual hearing loss (as my undetected AN grew) helped me learn to cope with my steady slide toward becoming SSD.  The fact that I'm retired and don't have to cope with work-related issues is clearly a factor in my ability to 'live with' unilateral hearing.  Although time and practice should help you better cope with being SSD, I would encourage you to continue the battle with your insurance company to obtain a BAHA implant/processor.  I won't try to deny that this is probably the best solution out there for those suffering from being SSD, so I hope you'll be successful in getting yours.  If all else fails, paying for a BAHA out-of-pocket is something to consider, although the high cost may make that a non-starter. In any case, best of luck in your struggle with your medical insurance company (to pay for a BAHA unit) and, in the meantime, I trust you'll be able to adapt somewhat to being SSD.

Jim

[leapyrtwins]

oHIo -

I'm so sorry to hear about your insurance company - makes me very mad and sad 

I met a great rep from Cochlear @ the ANA Symposium last weekend and if you want I'll send you her contact information.  Although you said you've already worked with one rep, perhaps another rep would have a different angle.  There's always a first time for everything, plus insurance companies hate to be bothered, so maybe if you keep pursuing this you'll get it approved.

Have you contacted the department of insurance in the state where you live?  Every state has one and they may take up your cause. 

I wonder if we started a petition on your behalf if your insurance company could be persuaded.  I'd be happy to start one if you think it would help.

Jan

Sorry for the hijack Phyl, Steve, joef, and Jim - sometimes it's just necessary.

[jerseygirl]

Hi, Jeepers,

I have been SSD since 1988, so here is my experience.

1) No problem whatsoever hearing alarm clocks, sirens, etc.

2) The biggest problem I have is sound localization. I look like an absolute idiot rotating my head while trying to locate the source of the sound, for example, when somebody calls me. I got Transear a year and a half ago (after my second surgery) and surprisingly it helps me localize the sound. It is no a guarantee, some people can do it and others cannot. Ii is probably the biggest help Transear has given me.

3) Ignoring sounds (and people) on my deaf side. I learned early to poll my deaf side periodically (every few minutes) and shift attention to it so it does not happen.

4) Hearing WOMEN on the deaf side. Men speak louder and do not gossip. Most people's hearing is better at the frequencies men speak anyway so it is less of a problem to begin with. Women (and that includes me) like to gossip which is softer than soft speech. Hearing it without any augmentation is difficult. Sometimes I appear slightly naive because I am out of the loop or stupid because I have no idea what has just been said.

5) Hearing in the remaining ear became too sensitive. Sirens are too loud. Very noisy situations require earplugs.

6) Compensation can be visual (looking at the lips or source of the sound) and cognitive ( knowing where the sound came from, where the person who just called you is standing, etc). After a while, I learned to automatically inspect my environment for  potential sources of sounds and be aware of people's location in the room immediately upon entering, something that people with bilateral hearing do not have to do.

7)Structured situations (formal meetings, for example) is not an issue because usually there is no background noise and people are seating. I can compensate visually and cognitively really easily. Unstructured situations with a lot of background noise is a problem because things are happening too fast for me to compensate. An example would be my son's basketball game and trading floor (as in trading stocks). I always miss crucial information in these situations and just plain do not understand what is going on.

Here is what I learned over the years that helps:

1) Become best friends with the biggest gossip or chatterbox in town, office, etc. in order to be in the loop. This compensates for not hearing the gossip behind your back.

2) Realize that one-on-one is not a problem and you are not at a disadvantage here. Have confidence in what you hear. In an unstructured situation, approach a person and have a conversation at length while looking at his/her lips. Even with background noise, you can make out what the person says. My brain can actually suppress any background noise and just pick out what I want to hear. People vary in this respect. Somebody with ADHD will have a problem.

3) Become a central  figure at a party, for example, host/hostess, presenter, organizer, helper, etc. This is very valuable in terms of people actually coming to you with the information instead of you straining to hear the conversation. It also allows to meet more people and they might come to you and strike a conversation. Being a wallflower is very isolating, makes you feel bad and socially damaging. Be active instead by creating a role for yourself. Impose your own structure on an unstructured and unfamiliar situation.

4) Immediately inspect your environment  for potential sources of sound and people who might be calling your name (your boss, coworker, etc) This kind of thinking takes practice but after a while it happens automatically.

5) Position yourself on a good side if possible to hear better. Sometimes you do not want to reveal your SSD so it can be done inconspicuously.

6) Get BAHA, Transear or Cross hearing aids. In 1988, when I first had surgery, nothing was available. Now there is a choice. Highly recommend!

Hope this helped! Good luck!

              Eve