Hearing loss support - New SHL - would appreciate feedback

Author

New SHL - would appreciate feedback

keyes04@netscape.net

2006-07-12, 2:24 am

I experienced SHL 2½ days ago (Sunday). Upon waking, I initially
wondered what the loud tone was - almost like the smoke alarm, but
slightly lower frequency. It didn't take long to realized it wasn't
external. For about an hour or so, I could still hear my fingernails
clicking if I put them right at the ear canal opening, but within a
couple of hours of waking up all was gone - including tapping sharply
on the bone immediately behind my affected ear. The weekend on-call
physician was worthless, as was the "ask-a-nurse" service I called.

After realizing this might be permanent, I started my internet
research and discovered that I wasn't alone with the fairly classic
presentation of SHL. I tried to first get in with my family practice
doc yesterday morning (actually went to the office when they opened),
but couldn't get an app't until late afternoon. I booked it, but told
her I'd cancel if I got in to see an ENT that I'd been to many years
ago for unrelated issues. I was able to see his partner shortly after
they opened their door. Needless to say, I didn't bother seeing my
family doc.

A full audiological workup was done, confirming what I'd pretty well
determined for myself with extensive research almost all day Sunday as
well as early Monday morning before going to either doctor's office:
profound sensorineural sudden hearing loss - absolutely no hearing at
all in the affected ear. Unfortunately, I'm not a candidate for
steroid treatment based on past medical history on them .... Oh - and
as a precaution, he's having me get an MRI study Friday, of course.

My questions are many, but the first three will be all I'll ask here
tonight.

1. How long has it taken others to learn to discriminate and pay
attention to an individual sound among many (particularly one voice
out of a number of people talking at the same time? These past two
days have taught me that I don't want to be in large stores (loud
speaker, music, many people talking at once, other noises) because the
sounds all blend together and give me a feeling I suspect only those
in this group can understand. It's overwhelming, and I cannot
discriminate enough to pick out (and pay attention to) a single voice.

2. Does the tinnitus ever get back down to a pre-SHL level? I've
always had some due to flying Air Force jets a number of years ago
(T-37s - the hearing killers). But over the years, I usually didn't
notice it - until now. Oh - and does the "fullness" feeling
eventually go away?

Yes, I know there's a small chance at partial or full recovery if I
can ever regenerate a few "hairs," but I'm assuming this is for good
and trying to start the coping process as soon and as fully as I'm
able, in case I do end up stuck withthis for the rest of my life.
(I'm still under 60, so I've got a lot of years to live with this
probably.) So, question number 3:

3. Any techniques or hints for coping, retraining my brain, etc.,
from others with total loss in one ear only will be greatly
appreciated. I know I'm still in shock, and it only occasionally
brings a tear or two as I contemplate never being able to tell the
direction of a sound again, and never having stereo hearing ever again
(should save on computer/stereo speakers, at least <<grin>> ). I don't
think this has really hit me yet at an emotional level - just an
intellectual level as a self-protection mechanism. But eventually,
I'll need to deal with that aspect of it too.

Thanks,

C.R.

Ken

2006-07-12, 2:24 am

A couple of comments:

1. If you have normal hearing in one ear you are way ahead of most
members of this group.

2. The odd things you are hearing and the lack of discrimination simply
reflect the fact that your brain is not receiving half of the
imformation it was used to relying on.

3. If your bad ear does not come good your brain will, over a period
of weeks/months adapt to the new situation - obviously not returning
your hearing to normal but moving in that direction. You will be able
to tell what direction the sound is coming from (though not as
precisely as with two ears) and you will achieve a degree of
discrimination - the abillity to focus on a particular sound source -
though, again, obviously not as effectively as with two working ears.

The above comments are not based on any experience with SHL but reflect
about 20 years personal experience with hearing loss. I suppose the
essential message is don't panic and don't underrate the ability of the
brain to adapt to the new situation, given time.

Lynne

2006-07-14, 4:25 pm

I'm sorry to hear that you've gotten hit with SHL. I lost 100% hearing in my
left ear and probably close to half in my right, 4 1/2 years ago. It's been
quite an adjustment and I'll attempt to address your questions based on my
epxeriences.

1. I too have a lot of problems discriminating direction and sorting out
who is speaking. Most of the time, I cannot clearly understand one person if
there are many people speaking or if there is a lot of background
conversation and/or noise. I have adapted by controlling, as much as I can,
what sort of situations I am in. For example, if I'm meeting someone for
lunch, we try to meet before the lunch crowd hits and, ideally, there will
be carpeting rather than hard floors. I also am careful about where I sit in
relation to everyone else at the table. A booth works best for me, by the
way. I go grocery shopping as early in the day as I can, to avoid the crowds
and all that noise. The bottom line, for me, is that I have had to accept
that there will always be environments that are easier or more challenging
for me to hear clearly enough to understand. Oftentimes, I never know, until
I get to a new place, how well I'll be able to hear. For me, it's on-going
trial and error.

2. My tinnitus is a faint intermittent "chirp" and not all that
distracting. It is in my deaf ear (the left, by the way) and seems more
active when I don't have my hearing aid inserted in my good ear. Hopefully,
you'll adjust to yours and will be able to tune it out over time. The
fullness, for me, has never gone away, but, like the tinnitus, I've just
gotten used to it. It's just there. It seems to be more noticeable depending
on the weather conditions, but there is little predictability to it. I have
allergies and the fullness seems to be more noticeable if I'm suffering from
allergies.

3. I have adjusted to not being able to discern the direction a sound or
voice is coming from. As for being able to hear stereo, those days are
obviously gone. The best I've been able to come up with is to place both of
my desktop speakers on the side of my good ear. It's definitely not stereo,
but, I can at least hear the output from both channels. I really haven't had
to adapt all that much from being a hearing person to being deaf in one ear.
Given the short time period from my SHL to being fitted with an aid was a
matter of two months. My ENT put me through a series of different
medications, none of which worked. The final test was an MRI. That too
showed nothing out of the ordinary, and the final step was being fitted with
an aid.

I don't know if I've addressed your questions, but I wanted to respond and
let you know what my SHL has been like for me.

Lynne

<keyes04@netscape.net> wrote in message
news:jur8b29gvbbe4mgij8fn520f8gsos2rhf0@4ax.com...
>I experienced SHL 2½ days ago (Sunday). Upon waking, I initially
> wondered what the loud tone was - almost like the smoke alarm, but
> slightly lower frequency. It didn't take long to realized it wasn't
> external. For about an hour or so, I could still hear my fingernails
> clicking if I put them right at the ear canal opening, but within a
> couple of hours of waking up all was gone - including tapping sharply
> on the bone immediately behind my affected ear. The weekend on-call
> physician was worthless, as was the "ask-a-nurse" service I called.
>
> After realizing this might be permanent, I started my internet
> research and discovered that I wasn't alone with the fairly classic
> presentation of SHL. I tried to first get in with my family practice
> doc yesterday morning (actually went to the office when they opened),
> but couldn't get an app't until late afternoon. I booked it, but told
> her I'd cancel if I got in to see an ENT that I'd been to many years
> ago for unrelated issues. I was able to see his partner shortly after
> they opened their door. Needless to say, I didn't bother seeing my
> family doc.
>
> A full audiological workup was done, confirming what I'd pretty well
> determined for myself with extensive research almost all day Sunday as
> well as early Monday morning before going to either doctor's office:
> profound sensorineural sudden hearing loss - absolutely no hearing at
> all in the affected ear. Unfortunately, I'm not a candidate for
> steroid treatment based on past medical history on them .... Oh - and
> as a precaution, he's having me get an MRI study Friday, of course.
>
> My questions are many, but the first three will be all I'll ask here
> tonight.
>
> 1. How long has it taken others to learn to discriminate and pay
> attention to an individual sound among many (particularly one voice
> out of a number of people talking at the same time? These past two
> days have taught me that I don't want to be in large stores (loud
> speaker, music, many people talking at once, other noises) because the
> sounds all blend together and give me a feeling I suspect only those
> in this group can understand. It's overwhelming, and I cannot
> discriminate enough to pick out (and pay attention to) a single voice.
>
> 2. Does the tinnitus ever get back down to a pre-SHL level? I've
> always had some due to flying Air Force jets a number of years ago
> (T-37s - the hearing killers). But over the years, I usually didn't
> notice it - until now. Oh - and does the "fullness" feeling
> eventually go away?
>
> Yes, I know there's a small chance at partial or full recovery if I
> can ever regenerate a few "hairs," but I'm assuming this is for good
> and trying to start the coping process as soon and as fully as I'm
> able, in case I do end up stuck withthis for the rest of my life.
> (I'm still under 60, so I've got a lot of years to live with this
> probably.) So, question number 3:
>
> 3. Any techniques or hints for coping, retraining my brain, etc.,
> from others with total loss in one ear only will be greatly
> appreciated. I know I'm still in shock, and it only occasionally
> brings a tear or two as I contemplate never being able to tell the
> direction of a sound again, and never having stereo hearing ever again
> (should save on computer/stereo speakers, at least <<grin>> ). I don't
> think this has really hit me yet at an emotional level - just an
> intellectual level as a self-protection mechanism. But eventually,
> I'll need to deal with that aspect of it too.
>
> Thanks,
>
> C.R.

keyes04@netscape.net

2006-07-15, 2:24 am

Thanks to the two that responded. It's been an interesting week, and
though I intellectually knew my brain would eventually re-train, I
didn't expect to be as comfortable as I am in under a week. The panic
and depression only lasted a few days - perhaps partly because I was
able to get started on some treatment. I know it's a fairly long
shot, but somebody makes up the group in the low % of recovery, so why
not me? I've already beaten the odds by having this happen at
something like 20 in 10,000 or less, so why not some low number in
100?

I learned about 15 years ago that oral steroids and I don't mix, and
when I discussed it with my ENT, he concurred - I "ain't" goin' there
again. But with some research in the first few days, I found out that
intratympanic steroid injection has a reasonable decent recovery rate
(partial to full - quite variable), and perhaps at or near the rate of
recovery as oral steroids. My ENT also did his own research, we
compared notes, and today a tube was inserted in my left ear with the
first dose of steroids - not a particularly fun experience, but if I
happen to hit the jackpot again (this time on the positive side of the
curve), it will have been a no-big-deal deal.

In the meantime, I've actually started listening to the radio while
driving even with the A/C blower on high - something I couldn't stand
to do early in the week, even with the A/C off. It's still not easy,
and I'll feel a little more at ease once I've been able to hear a
siren or someone else's horn while also listening to the radio - there
just hasn't been that opportunity so far. I have an uncomfortability
that I won't notice it since all the sounds sort of merge - those here
certainly must know what I mean.

While I know that with profound loss, my chances of recovery are
considerably less than a "simple" limited loss in only some ranges.
But if I can regain even a portion, I can then presumably go to a
hearing aid for a little more improvement. And if I stay as I am, I'm
still OK with it - not my ideal certainly, but as I said at the top,
I'm beginning to feel more comfortable already (5 days into it all),
doing things and not even thinking about the fact that all I'm getting
is on the right side (groups of people not yet being one of those
comfort zones of course). I can even understand how some
directionality is likely to be possible in the future, since direct
vs. reflected sounds are beginning to be differentiated in some
settings. It's still a long way from comfortable, but I certainly
feel more hopeful, even if there's 0% recovery.

Again, thanks to those who shared - the support is appreciated.

C.R.

Ken

2006-07-15, 2:24 am

About 15 - 20 years ago my ENT diagnosed macular dystrophy and
confirmed that it was continuing towards what is usually something
close to blindness. And at that time (and probably it is the same
today) there is no known teatment/cure.

Already being deaf, you will understand that I was not very happy. So,
as you have done, I pressed my ENT and this yielded some possibilites
which 'might' help.

Well I followed these religiously and, whether because of the treatment
or otherwise, the degeneration was arrested.

So I commend your refusal passively to accept an adverse situation.

Incidentally the medication which I have followed, on my ENT's advice,
is also recommended for a variety of other common vascular and
oncological risks.

Ken

2006-07-15, 2:24 am

In the above post I referred to my ENT when I obviously meant my
Ophthalmologist. Sorry about that.

keyes04@netscape.net

2006-07-16, 2:24 am

On 14 Jul 2006 23:32:56 -0700, "Ken" <kkerrison@ozemail.com.au> wrote:

>So, as you have done, I pressed my [ophthalmologist] and this yielded some possibilites
>which 'might' help.

Ken,

What was very gratifying to me was that my ENT was truly open to
information. It's nice we both had doctors who were willing to work
with us. I've run across so many doctors who feel put off if not
downright angry when a patient even presumes to make a suggestion, or
even ask "too many" questions. In my case, after being told on Monday
(24 hours into the SHL) that steroids were the only known treatment to
make any statistically significant difference, and having had a very
bad reaction to steroids about 15 years ago, there was no way I was
going to risk that again. He concurred. He told me that there were a
number of other tests that could be done, but he did not recommend
them because, as he put it, they would just spend my money for me.
But he did want an MRI just to rule out something worse, and a more
definable cause. I found that very reasonable (even with the quick
$100 deductible it cost me unexpectedly).

I have to say, I was rather impressed with him. Having already done
some internet research sitting at home all day Sunday (day 1 of SHL),
I already knew that given my symptoms, I almost certainly had ISSHL,
or SSNHL, depending on what a given article/author called it. And I
also knew that there were no statistically significant tests or
treatments beyond steroids plus an MRI as a very responsible "just in
case" diagnostic tool. So many doctors want to just run every test in
the book - sometimes I think they must be on the boards of every lab
and testing center in the area, or else they get commissions. <<g>>

But by Wednesday (day 3) I'd found a considerable number of articles
about the intratympanic (IT) steroid injections for those for whom
systemic steroids are not a viable option. I found one particular
article by a couple of major university medical college
professors/researchers, was impressed by it, and decided I had
absolutely nothing to lose. I emailed both, one of whom apparently no
longer works at that major educational institution (a name everyone
would know). I explained in the letter that I was in no way asking
for personal medical advice, that I work at a hospital and fully
understand that would be inappropriate to expect such an answer since
they had never evaluated or even met me. I was only asking if there
was an update on the IT steroid treatment, and one additional
question. Frankly, I didn't expect either one to even bother to
reply. One bounced as a no longer valid address almost immediately.
But amazingly, less than three hours later, the other author (a major
researcher in that field) emailed me back with a detailed full page
response. He concluded with a P.S. that stunned (and thrilled) me, to
be quite honest: "If this was my ear and I could not tolerate oral
steroids, I would DEFINITELY take a course of IT steroids." Now that
was about as close as he could come to a personal recommendation,
without leaving himself open for a malpractice suit down the road,
potentially. And I was truly grateful for it. Assuming my diagnosis
was correct (and my ENT was very certain of it - too classic not to
be, most likely), I had what amounted to a direct recommendation by
one of the top people researching my condition. You don't get any
better than that! (Plus, it was free!!) If you don't ask, the answer
is "no" anyway, so I went for it and won.

I stayed up late that night doing further research and ended up
sending a fax to my own ENT, asking him to call me in the morning when
he got my fax - which included the research MD's email to me. He did
indeed call me the next morning before 9:00, and said he'd read the
email, and would certainly consider IT steroids, even though he had
not done it before. He immediately offered to refer me to a major
university medical center about 3 hours from here where they have a
neurotologist - I'd never heard of that specialty before. I told my
ENT - who I'd just met Monday filling in for the one I wanted to see
but who's unavailable right now - that if he felt competent to do the
procedure, felt comfortable that it was medically appropriate, and
wanted to do it, I had significant comfort in letting him do it. He
said he'd done other types of IT medication, and the concept wasn't
new to him, and that he felt very comfortable - both qualification and
experience wise, as well as with it being a medically appropriate
procedure. I asked when he'd like to get started. His answer was,
"Well, I'd rather not do repeated injections through the tympanic
membrane, I'd rather just put a tube in, and use that for injecting
the medication," since he'd be doing a tentative 6 injections. That
made a lot of sense to me. He also said he wanted to research the
literature more to make sure he got the right medication and dosage -
which further comforted me (no quick actions, but rather an informed
and deliberate decision).

I had no problem with him not being expert in SSNHL. I happen to be
in a medically related field, and I simply can't know all the ins and
outs of every disorder I treat, and be master of them all. But with a
little brushing up or research, there are many disorders I can treat
using the same basic skills I already use, just targeted in a
different way. His willingness to make sure he had it right rather
than jump in with both feet, plus his easy offer to refer me to a
highly specialized doc at an unrelated facility, further indicated I
was dealing with a man who took his professional oath seriously, and
put patients ahead of profits or even reputation.

When I went in Friday morning, I was armed with several pages, heavily
highlighted and marked, and I had even hand written a chart of the two
main medications used in the studies, with the various dose strengths
and quantities used in a large number of research studies. Amazingly,
one of the articles I brought in with me was the very same one he
excitedly showed me in a very recent journal he'd just received and
read (obviously he'd been doing his own research). I also brought the
films from my MRI earlier yesterday morning, which he AND his partner
reviewed for some time before he even came in to see me, just to make
sure there wasn't some more sinister problem going on before
proceeding with the procedure/treatment.

Instead of looking down his nose at me like, "Who does this patient
think he is, bringing ME the medications and dosages HE wants ME to
use?!?," he looked over the material printed from the medical
journals, spent some time with it, and said, "Well, we have this one
(of the two medications used in all the studies we'd both found), so
along with putting the tube in this morning, do you want to go ahead
and start the steroids too?" Again, I told him he was the doctor - I
had only done some personal research recognizing that he had far less
time to research just my case than I'd had over the intervening few
days since my first visit. And I reiterated that in no way did I want
to tell him how to do his job. I said that if HE thought the
treatment was medically indicated, and felt personally comfortable and
professionally competent doing it, I was ready to begin right then.
He'd put hundreds (if not thousands) of tubes in ears, knew how to
inject liquids, and knew how to read studies and other journal
articles. And he was willing to learn. That was all I needed to make
my decision. Plus, I liked his idea of using the tube, which is not
something I ran across in the several studies I reviewed. They'd
tried pumps and wicks in the past, but none of the current studies
mention doing the injections through tubes (presumably just multiple
punctures of the membane). Yep - I really like this guy.

I walked out with a rather uncomfortable ear ache, a new tube just
like my little grandson got recently, just a tiny bit of vertigo for a
couple of hours, and a real feeling of getting somewhere. I know the
odds are still quite low since my loss was total (profound), but the
steroids boost the odds at least some (statistically), and if I don't
try, I don't even give myself a chance at getting in the low-odds
group (i.e. the "miraculous recovery" group).

So often the medical profession is filled with docs that think their
first name begins with a capital "G," if you know what I mean, and
that they're higher and more almighty than anyone else on the earth
(except other deities - oops, doctors - who also start their names
with a capital "G"). Yet there are still some docs who're less
interested in a name or publications, who focus on patients, and are
willing to acknowledge that some patients actually have 3 digits in
their IQs and can do adequate research that might help make a
difference in their own cases. If we treat them with respect, don't
try to tell them how to do their jobs, but offer them additional
knowledge and options to consider, everybody wins. If I don't
reacquire a single dB of hearing, I'll still consider this a positive
medical experience because of the way in which I was treated.

Anybody who doesn't approach their own condition(s) in the same manner
is just short-changing themselves. With the internet bringing us
virtually all the latest literature that's also available to the
medical specialists, WE're the ones who are negligent if we don't get
ourselves up to speed on our own conditions as fast as possible. Then
we're in a position to better evaluate the physicians we turn to (and
their proposed solutions), and make appropriate decisions on our own
care. Any TRUE professional will respect that.

Just my long thoughts / 2¢.

C.R.

Ken

2006-07-16, 2:24 am

Whether we are talking agout GPs or specialists, they are all human
beings and all fallible.

I expect the professional people I deal with - doctors, lawyers,
accountants - whatever, to be willing to discuss, defend, debate their
advice.

The common ground should be that noone is infallible or knows
everything. And it is your life/quality of life/net worth which is at
risk.

If you are paying for the services of an expert you should not shrink
from challenging their assessment and, in my experience, if they are
any good, they will not only tolerate this attitude but positively
welcome it. Any other response exposes insecurity which, as far as I am
concerned, is a danger signal. I cannot think of anything more
frightening than an insecure adviser.

And if you give them an opportunity to go beyond the 'safe, secure'
advice, you may learn something which will make a big difference to you.