Author Topic: URGENT help needed re CHALLENGES of SSD  (Read 7132 times)

tenai98

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Re: URGENT help needed re CHALLENGES of SSD
« Reply #15 on: August 23, 2009, 06:01:35 am »
try tuning in to your other senses..like...vibrations in the ground.  I've also learned to do a visual of my environment and alot of times I can dicipher where the sound is coming from by its loudness....
I was at a b/day party for my mother yesterday and didnt find it to be a problem...But when at a large party, now there I had problems hearing ppl speaking cuz of the background noise....
Before surgery I kinda freaked out when I didnt hear the smoke alarm go off...Now I know there are many items available for us impaired hearing.  Strobe smoke alarms, vibrating alarm clocks, etc...
I dont find being SSD bothersome as of YET...I'm only five months out but I am lookin into the BAHA (appt this friday to schedule surgery)....
JO ;D
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

chocolatetruffle

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Re: URGENT help needed re CHALLENGES of SSD
« Reply #16 on: August 23, 2009, 10:55:26 pm »
hello jeepers
i have been managing SSD for the past 2 years, it is challenging in some situations, but it can be managed through adjustments.

one ear in a quiet environment means you will hear every single sound. sometimes i drive myself crazy by trying to figure out what that sound is. the funny thing is no one hears it except for me, and no, I am NOT imaging things  ;D

one ear in a loud environment means you hear the loudest sound, plus all other noise in the background.   so in a crowded place, i loiter on the "outskirts" to have a decent conversation.  when i enter a room, i look at the layout and figure where i will sit - like at the end of the table with my good ear facing the group or if the group is just too loud, i sit with my good ear facing the wall. getting a ear plug will also help, i use aquanot by westone which can muffle at least 23 dbl.

one ear in an outside environment - i do plenty of head exercises here  ;D ie use your sight and be aware of your surroundings

i am still learning, so it is definitely an ongoing process - hope this helps!
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

ChrisB

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Re: URGENT help needed re CHALLENGES of SSD
« Reply #17 on: August 25, 2009, 08:16:46 am »
Jeepers,

As you've seen, there is a wide range of personal responses to SSD - each of our brains and personalities are different.  So at one level, you'll have to find what's right for you.  And that does take a little time for most (I know it sure did for me).  But as you can see here, many people (MOST) have coped with it very well after a while.

I had sudden and complete loss (as in waking up without hearing in my left ear).  I'd gone 58 years with near perfect hearing (now just a little high frequency loss due to being a pilot in an earlier life), and the total, sudden change was quite difficult at first.  Added to that, there was some highly inappropriate discrimination and even a job status threat within the first few days, despite assurances from my doctor (in writing) that my immediate issues would moderate over time (they did).  But that was 3 years ago, and a lot has changed.

I waited 6 months before getting a TransEar (was concerned about having my skull drilled  ;)  so a BAHA wasn't an alternative I considered very long, plus I just didn't want a device in my good ear, so the CROS was also out).  Despite some significant difficulties with it in the first year especially (almost all audiologist-related), it was still a big improvement over nothing.  Since then I've changed audiologists and upgraded from the original model TransEar (I was one of the very last to get one) to the latest 3rd generation model.  What a difference!  Around the house at night or on weekends, I often don't wear it, but going out without it is not comfortable.  I don't listen to a lot of music anymore, and don't watch a lot of TV, so with just my wife and me in the home, being without it is not a real problem.

Loud restaurants and other loud multi-person situations are not particularly fun, but I've learned to be comfortable most of the time.  Sudden very loud, sharp noises sometimes actually hurt in my good ear, but that's infrequent.  However, without my TransEar, I avoid such situations - it makes a considerable difference.

Like most others, I cannot tell direction almost any of the time.  In a very quiet setting in a large room or outdoors, I can often tell if something is generally on my "bad" side, but forward or rear is still not something I can narrow down - just that it's on the "bad" side.  With multiple sounds, any directionality is gone.  That does present problems with traffic safety, particularly.  I, too, had a very significant near miss very early in the SSD process - stepped off the curb and was just missed (inches, not feet) by a speeding car that came out of nowhere.  I'd checked to my left, then right, and hadn't learned to re-check to the left yet - I learned that lesson immediately, on the spot!  ;D

When I'm on the phone, it really bothers me that I am unable to tell what sounds are at the other end, and what sounds are in the room with me (including someone coming in my office to say something while I'm on the phone, and I sometimes think it's someone in the background at the other end).  That's one of the things I find personally most frustrating.

Others have difficulty presenting and not being able to tell where questions or comments come from.  I was self-conscious with that at first (I facilitate groups, present to large audiences at times, etc.).  But after a while, I decided to just address it up front.  I simply ask those present for some help.  I tell them I can hear just fine - I just don't have any directional capability due to only one functioning ear, and ask them to raise their hands when they speak.  I've never found it to be a problem with anyone, even in some "disagreeable" group settings.  Most people will be very willing to accommodate with something that simple - after all, we all learned in school to raise our hands when we wanted to talk, so simply raising it when we ask a question or make a comment doesn't seem unusual to most people.

When I cut the grass, I have started ALWAYS wearing hearing protection in my good ear (I also wear it in my "bad" one because I get a really bothersome roaring sound if I'm exposed to a lot of noise in my bad ear).  I'm going to do all I can to preserve the one ear I have left.

I also learned from my audiologist to check ALL medications for possible hearing problems as side effects.  Apparently there are more than we know that can have some side effects affecting hearing.

Again though, don't go without an assist of some sort (BAHA, TransEar, etc.).  While I now know I could go the rest of my life with only single-side input, I much prefer having dual-sided input, even if it is all into one ear.  Large groups and background noise become much easier to deal with.

Bottom line: most everyone here and on the BAHA forum will tell you they've gradually adapted, and a new "normal" gets created over time.  Once it normalizes, we've unconsciously learned to adapt in many ways, and aren't bothered anymore (or very much) with what has become "normal."  Hang in there - it'll get better.  I've experienced the near-terror at the beginning, the depression (fairly significant), the self-consciousness, even feeling worthless and helpless at times.  Those are now just bad memories from the first months up to a year or so.  Life is good (again) - this is do-able!  ;D

(Wish I could help you with insurance.  AAAARrrrrrgggggghhhhhh!  >:(  )

Chris

P.S. Almost forgot - sleeping on my good side.  Yes, I've not heard the alarm a handful of times, but fortunately my wife is a heavy sleeper, and doesn't mind the volume up a little more than normal on the clock radio (I normally have to get up before she does).  I've learned to set it 15 minutes before I'd otherwise want to wake up.  If I'm on my good side, the sound begins to filter through to my conscious brain after a while, and I haven't overslept in at least a year.  In the beginning though - for some reason - I couldn't even hear the phone next to the bed turned up to its loudest setting, if I was on my good side.  For some reason, my brain seems to have adapted, and I still sleep well.  I can't explain it, that's just the experience I've had.
« Last Edit: August 25, 2009, 08:21:55 am by ChrisB »

epodjn

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Re: URGENT help needed re CHALLENGES of SSD
« Reply #18 on: August 28, 2009, 09:15:52 am »
Safety is certainly an issue for SSD folks. For the most part I do ok being SSD but this scared the daylights out of me. I was driving to my son's new home last week. I'd only been ther a couple of times, both during the day. This time it was dark and I couldn't see the street signs. I passed his street and had to do a U-turn. As I started to turn I heard a very loud long honk. Some idiot was driving without his headlights on IN THE DARK! and I had pulled out in front of him. Because i couldn't not see him and could not tell where his honking was coming from I totally froze. I had NO idea of what to do. I just slammed on my breaks and sat there paralysed. Now granted, most people remember to turn their lights on but this was a very scary situation for me and definitely a safety hazard.
Left side 3.2cm AN/FN removed 12/8/08 Dr's. Shelton and Reichman. SSD, facial paralysis,taste issues, lateral tarrsoraphy 6/25/09,scheduled for eye and nasal valve surgery 6/22/11 life is GOOD!