Trying to get use to SSD

[Jwh]

Hi,

I didn't think that SSD would impact my life since I've had moderate hearing loss and little voice discrimination on my AN side for years.......... Well it has been hard to adjust to having one usable ear since my Translab 4 weeks ago.  I find myself saying "what", "excuse me", etc a lot lately.  I feel lost when I'm having a conversation with someone and there is back ground noise.  If someone is talking fast or mumbling - forget it.  Crap what happens at social events - I'm going to be so frustrated.

How did you cope with SSD?  Does it get better?  Do you get use to it?

Thanks,
Jen

[Kathy M]

Hi Jen,

I am so glad you asked this question and am so looking forward to reading the posts that come.  I'm 6 weeks post-op and am struggling too.  I am struggling with this too, although I've struggled with other things, too, and sometimes feel really guilty being so whimpy!!!  My tinnitus isn't all that loud and it is always worse at night, but I don't think it makes me hear less from my good ear (if that makes any sense).  BUT...I am so embarrassed to keep asking for people to repeat themselves, or worse yet, to not even hear at all what someone said to me and have another person in the room tell me that "so and so" asked you a question.  I think this is my biggest concern about returning to work in April (at least April is what I'm shooting for).

I hope you get some great feedback and you're not alone!!!

Kathy

[Kaybo]

Jen & Kathy~
I have been SSD now for 13 years - it really hasn't affected me too much...BUT the big difference is that when I had my surgery and had to get used to it, I didn't have any other choice.  I remember having a REALLY hard time understanding Dave or us getting used to him always walking on my left side at first.  However, now it is second nature - he even switched sides one day when he was walking with a guy from work so he'd be on the left!!  Now there ARE options and a LOT of people use them to help.  I would not hesitate to check into them!  Don't ever feel bad or guily though, because you have to ask more than once when you don't hear correctly!  You are important and it is important that you get the information - whether it is the first time it is said or the 20th!   

K

[Sefra22]

Hi Jen and Kathy,
For me, SSD was no big deal...at first. In fact, I have had no usable hearing for 1 1/2 years, but it really only started to bother me in the last 3 months. I manage a music/video store, so my environment is quite noisy. People will approach me on my deaf side while I am at the register, and I cannot believe the hostility I get when I tell them I am deaf on that side and ask if could they please come around to the front of the counter so I can hear them.

The most difficult thing for me is not knowing where the sound is coming from. Sometimes an employee or customer will call out to me, and I will start spinning around to locate them.  At home, I can't find the cordless phone. When I'm driving (and this is the scariest thing) I can't tell where sirens are coming from.

The only GOOD thing about SSD, is I can sleep on my hearing side when my husband's snoring is keeping me awake

Currently, I am planning on getting the BAHA. I am just waiting to find out if my insurance will cover it, and hopefully I will be hearing better by summer.

Lisa

[Pembo]

I went from very little hearing loss to SSD and it was very hard at first. I keep reading, here, that it would get better and I would get used to it. I did...somewhat. I had to teach my family to answer I'm in the kitchen instead of I'm here. I'm also very good at the ssd shuffle...moving to side where I can hear. My biggest challenge was being in the car with my kids. I'm right ssd and when I am driving I can't always hear what my kids have to say. On the day I asked my son to repeat himself for the 3rd time and he said "whatever" I decided I needed the BAHA. It doesn't work as well as my original hearing but it helps!!!

The advantage to ssd....I can sleep through anything!!

[wendysig]

Jen,

I had already lost my useful hearing in my AN ear before my surgery and found it difficult to function normally.  In the past 6 months, I've come up with some solutions to the problem of being SSD, but still find not hearing on my right side frustrating. I do find that I say what, excuse me, etc. a lot and that is just a fact of life when you are SSD.  As most people probably do, I find  that, when I am with just one person or having a conversation with just one or two people it's really not too bad;  when I am in a group, I try to position myself so that my ability to hear is optimal -- for example, I went to lunch with my brother and sister and they sat together and I sat opposite them so I could hear both of them best had there been a fourth person with us, I would have asked them to sit on my left (hearing side) and it would have been okay.  We also chose a restaurant we knew wasn't very noisy at the time we would be there;  When I am at a large social gathering (i.e. a family get together of some kind -- I have a huge family) I try to sit or stand with a smaller group, no more than three other people. unless we are sitting at a table and everyone is kind of spread out.  If there are too many conversations going on within my hearing range or other background noise, I can't understand most of what's being said and excuse myself. 

I know some people don't find being SSD a huge problem and while I find I am dealing with it better than I did at first I really miss hearing on my deaf side.  I had BAHA surgery in January and hopefully, in a little more than a month will I'll be able to start using my processor.  I know this won't eliminate my hearing problems completely, but I have high hopes that it will be a big help.

Wendy 

[Jwh]

Yes, I forgot to mention how difficult it is to determine where noises are coming from.  I've had that for years though!  If I hear a noise, I normally go in the wrong direction to find it.  That I just live with.  I hear a lot of buzz about the baha.  How is that surgery? 

Jen

[Syl]

I'm not SSD, but my word recognition is pretty far gone. Just this week my cublicle at work was moved from a pretty quiet room to a much larger room with 40+ occupied cubicles and lots of noise. I also find myself saying "what?", "who?", "say that agian", "I didn't hear that" alot more. Some people know about my hearing loss and understand, but even some of them have to be reminded which is my AN ear.

I'm also getting really good at the SSD shuffle.

Syl

[sgerrard]

I'm not SSD either, but have had both the directional issue and the "what" issue. I would walk outside, hear a little bird somewhere, and spin around trying to see where it was. The neighbors just whispered "brain tumor."   My hearing aid helps, but doesn't restore original hearing. I have gotten used to it, though, and don't notice the deficits so much now. I can even find the birds sometimes. I think the brain can adapt quite well over 6 months to a year. I have also met people who have been SSD for years, and they have completely adapted to it, with all the repositioning etc. coming as second nature. At my first AN group lunch, I exchanged places with Nan at the table, to put our good ears on the correct sides. That's the day I felt like I had really joined the AN club.

Steve

[Jim Scott]

Jan ~

In an ironically fortunate way, the hearing on my 'AN side' (my left ear) started diminishing around 2000.  By the time I was diagnosed, my hearing ability in that ear was gone.  Because of this, I had a fairly long period of time to adjust to being SSD, which is probably why I function fairly well with it, now. 

You asked: How did you cope with SSD?

I compensate by doing what everyone who is SSD seems to do, which is just common sense.  I sit where my 'hearing ear' is in closest proximity to a person (or persons) speaking to me, which often requires me to lean in or turn slightly to my 'good' side (my right ear) to better understand them.  Yes, I have to say "what?" fairly often, which is not exactly a burden.  My wife is well aware of my SSD and when we're out (say, in a mall), she'll always position herself to be on my right (hearing) side.  It's the same in social situations...my wife is careful to sit or stand on my hearing side.  Fortunately, the hearing acuity in my functioning ear is excellent and by simply turning slightly or leaning into the speaker (say, at a store counter) I can understand what is being said.  Again, being very aware of your position relative to a speaker you wish to hear is crucial.  For instance, in restaurants, I always sit where my 'good' ear is facing the outside (not a wall) which enables me to converse with the waitperson.  In church or other venues where I have a choice of seating, I always sit near the front.  At home, I use 'TV Ears' http://www.tvears.com/shopexd.asp?id=4&gclid=CLXtzv_z_5gCFQETGgodWkqhlw to hear the TV adequately and not require the sound to be set at a level that is uncomfortable for others. 

Granted, I cannot determine directionality and a siren blaring while I'm driving will have me swiveling my head to find where it's coming from, but that is not much of a problem.  My wife and I use walkie-talkies or our cell phones to locate one another in malls and large stores or resort-type areas, when necessary.  She does forget occasionally, and tries to talk to me from the next room or while walking away.  In this case, I either follow her or just say "I can't hear you" and she repeats herself if I'm close enough to hear her or if it's unimportant, she'll just say "never mind" . 

Generally, I find my SSD to be a slight handicap and something I have to adjust for quite often, but it's hardly a disability or negatively affects my life.   Sure, I miss my bi-lateral hearing - who wouldn't?   However, I enjoyed it for almost 60 years and even now, what I hear, I hear clearly.  I still enjoy music and can hold a normal conversation, which I often do.  I consider myself well-adjusted to my SSD because I had the time to adjust and didn't go from good or even partial hearing to SSD overnight, as some have been forced to do following surgery.  That noted, I think it's somewhat a case of acceptance and attitude.  We have to fully accept that our hearing is gone in one ear and very likely isn't coming back.  We also have to learn the subtle methods of coping with SSD and employ them on a daily basis.  Many of my acquaintances still don't realize I'm deaf in one ear.  Others do know, and will ask; "is this your good ear" when speaking to me in a noisy environment (restaurant, party, etc).  I appreciate their accommodation.  Yet for some, none of this is effective or satisfies their need to hear, especially in a work environment.  I fully understand that and for those folks, I recommend a BAHA or other hearing aid.  They work - and those who use them seem to be well pleased, which is high praise, indeed.

To succinctly answer your other questions: Does it get better?  Do you get use to it?  Yes - because you get used to it.. 

Jim

[moe]

Totally agree with everyone. It's  a matter of life style change, just like a diet or post heart attack/stroke or whatever. And a sense of humor works.
 I'm left sided SSD. Worst for me is in a noisy grocery store. My bad ear is to the cashier and they are asking questions while talking to their register. They then look up, turn around and repeat. I'm to the point where I just say "Sorry, I'm deaf in my left ear."
 I'm 2.5 years post surgery. Had the BAHA implanted during the original surgery because they knew I would lose all hearing. The BAHA didn't work for me, because the tinnitus overpowered it, and the site kept getting irritated. Plus the BAHA was dysfunctional. I got it repaired and it still didn't work.
But it does work for most people. The sounds you hear will be perceived differently, almost like stereo sound. You can adjust the volume and there is a switch for which kind of noisy background situation you are in.
I had the screw removed from my head, still have the titanium implant in the skull. They can always reattach it some year if I am interested.
 Right now, it was just a nuisance. And no, I do not set off the alarm at the airport!
So basically, I have to change my lifestyle, and make it a point to be in quiet enviornments. It is definitely worth a try.
Maureen

[Kaybo]

ditto on ALL points that Jim made - he can just word things so much better than I can & is able to type LONG responses (which I stay away from since it is not very easy for me to type since my stroke!)  

Thanks Jim!
K

[leapyrtwins]

While some have learned to cope with SSD (Kaybo, Jim, etc.) I found that I did not. 

Before my surgery my hearing was diminished, but I had fairly good word recognition, so I only had a little "taste" of what being SSD would be like.  I had asked my neurotologist about hearing options pretty much as soon as I was conscious post op and heard my hearing wasn't able to be saved.  He mentioned the BAHA, but said I had plenty of time to think about it when I was healed.  We talked about it long before that time, due to my frustrations.

After my AN surgery, when I was coping with lots of "bigger" issues - double vision, balance issues, fatigue, etc. - it seemed like SSD was just going to be an "annoyance".

However, I soon found at home that my children would speak to me and I had to keep asking them to repeat themselves.  They soon grew frustrated, I soon grew frustrated; after repeating the same thing numerous times, they would just say "never mind".   When I would take a nightly walk with one of them, which was my habit even before surgery, I would have to position him/her on my "good side" or I'd miss everything he/she had to say.  I even took to physically putting my hand on my child's shoulder and moving him/her from my bad side to my good.  In short, I was missing a lot.

Once I returned to work, I found that things weren't any better.  Despite telling everyone upfront that I was SSD, they wouldn't remember.  People would walk into my office and talk to me and I had no idea what they were saying.  I felt like "WHAT?" was a major word in my vocabulary.  I had to ask people to repeat themselves the majority of the time.  In casual conversations with people I was often agreeing to stuff I didn't even know I was agreeing to.  I also said "yes" and "right" a lot and the person I was talking to would give me a very strange look.  It became obvious to me that I was giving incorrect responses    At meetings I would have to arrive early in order to sit in the place I would be able to hear everyone.  Sometimes I wasn't able to procure that spot and would have my boss on my bad side whispering comments to me that I would just pretend to hear.  I'd nod and smile. 

Since my AN was in my left ear, I couldn't hear the teller at the drive-in at the bank or the person at the drive-thru without turning my whole body.  I found myself explaining to complete strangers that I didn't know what they just said to me and why.  "I'm deaf in my left ear."

When my head was healed "enough" I had the BAHA demo in my neurotologist's office and I was totally amazed.  He had me plug my good ear with my finger and he talked to me.  I actually heard every word he said - and clearly!  It was like a light went on in my head.  I couldn't wait for the implant surgery.  That was in September.

Although I was told it would take about 4-6 weeks for my insurance company to approve my surgery and processor, it wasn't approved til the end of February.  The day coverage was approved I was ecstatic.  I realized at that point how depressed my SSD had been making me.

I had the surgery on March 4th 2008 and started wearing the processor exactly 90 days later.  I have never been sorry; I am still ecstatic today.

The BAHA implant surgery is nothing like AN surgery.  It takes about 90 minutes, but a lot of that is prep time (draping of your head, face, etc.) and it is done as an outpatient surgery.  You generally get the choice of local or general anesthesia.  I chose local, which not only cut down on the cost of the surgery, it made it much more pleasant (no ucky effects from coming out of the anesthesia).  My site healed without any issues or infection and things have been great.

I do not experience tinnitus - didn't before or after my AN surgery either - so that is not a factor for me.  However when I had my implant my doc had performed over 200 BAHA surgeries and told me only one person was not satisfied.  I don't know how many of those 199 patients have tinnitus, but I have to believe that at least some of them do.

The BAHA is not for everyone.  Obviously there are those who have adapted to SSD just fine.  There are also those who don't want a titanium rod implanted into their skull.  I understand this.  But in my case the BAHA was definitely for me.

As others have said, and it's true, the BAHA isn't going to you back your "normal" hearing again, but IMO it's a vast improvement.

Give SSD a little time, and if you think it might not be for you, I strong recommend looking into the BAHA demo.  It's a lot like the real thing - only the real thing is better.  There is also the TransEar if you are looking for a more conventional hearing aid.  Those who use the TransEar are very satisfied with the results.

Jan

[Kaybo]

Jan~
I had never thought about the "side" being a factor.  I think it would be hard for it to be the LEFT side b/c of what you said about drive-thrus, the bank, etc.  That helps me have a better perspective of how it might affect others - thanks for pointing that out!

K 

[vjgfamily]

When my tumor was removed, I had already lost most of my hearing in that ear, so it wasn't a huge change.  The funny thing is that I had learned to read lips, and I didn't even realize it.  That has helped in noisy situations, when I could combine what I was hearing with reading peoples lips.  Of course, I still have many "what?" moments.

I deal with it much like what has already been mentioned.  I don't notice it too much anymore.

Verl