how a deaf fluteplayer gets to hear again

Berti66 · Post by **Berti66** » Wed Aug 13, 2008 2:28 pm

and here I am.....the day is over and it was an interesting day.
surprisingly enough, I went to the hospital completely relaxed and came out the same way.
what happened in between......was a surprise.

I had set myself on a difficult talk to the audiologist I cannot get along with, plus AB people.
but I found a new audiologist and a very nice woman from AB.......
together with my ci friend from the forum, we had a good hour and a half together.

during that time, the internal part was checked with three tests, of which two were OK and the third was showing distortions in the midrange and trebles, but the woman could not yet tell me if this was wrong or that it was within normal limits.
that should be decided by the AB people in france and should be available in a few days.
this distortion is important because the midrange and trebles are important for speech recognition and if there is a distortion they should at the very least calculate that in with the programming of the processor next times.

the processor was checked and OK, the mic was checked and replaced, so was one of the accus which seemed to have a leak but not confirmed but replaced anyways.
that is AB's job done, minus the advice in some days.

I was assured by the audologist that I will get an appointment with him on short term and if nothing has changed for the better by then, we will start looking on my comments which I made today.
I have checked carefully and my own conclusion STILL is that the problems are because of the programming is not finished and not working properly.
Tests I have done with playing showed me, that the problems are in the 400 - 1600 hertz range. I am a musician so I know what I hear.
Does that ring a bell????????? YEs it should because it is midrange.
See above.
What happened in december with the good programme I had been using, was also that more midrange was added, and NOW I do understand WHY people were saying that I had too much midrange, more than the average CI user (as far as there exists such a person called average).
The coming weeks/ months time will learn if I have been right, with the audiologist appointment.

The next appointment is the 25th.
I am going to think things over again and see what I am going to say then.
But not today.
Time for some sleep now.

Thanks all for rooting and sending wishes and whatnots today

Cheers
berti

peeplj · Post by **peeplj** » Wed Aug 13, 2008 2:49 pm

That's good news.

I'm so glad things are hopefully starting to look up for you!

It makes all the difference in the world if you can ever get a specialist to actually stop and listen to what you are saying.

--James

Cork · Post by **Cork** » Wed Aug 13, 2008 3:03 pm

Berti66 wrote:...please send positive energies.........

My regret is that you must wait so long for appointments.

However, positive energy is being sent, to you.

Go, Berti!

:-)

MTGuru · Post by **MTGuru** » Wed Aug 13, 2008 3:29 pm

That's good news, Berti, thanks for your report. I'm glad that the representative from AB was present, and that the company is going to be directly involved now in working on your problem. A+

anniemcu · Post by **anniemcu** » Wed Aug 13, 2008 8:39 pm

Less than two weeks to the next appointment too. That's good news. May it bring fulfilling results in good time!!!

Innocent Bystander · Post by **Innocent Bystander** » Thu Aug 14, 2008 2:33 am

Interesting days need mulled over. One step forward. Good Going, Berti!

devondancer · Post by **devondancer** » Thu Aug 14, 2008 10:57 am

So pleased for you. Let's hope people continue to listen to you, and that you can tell them exactly what you need.

Best wishes,

Roland (and Lesley would want to be included too)

Berti66 · Post by **Berti66** » Mon Aug 18, 2008 1:39 am

I have some hope again.
Talking to an CI friend she subtly reminded me of something that I used to say myself in the beginning of the rehab period.......that it doesn't matter what kind of stimulation you use.

Last few days I have been using the Ipod intensively and also play one to two hours a day.
What happens after that, is that sound comes in REALLY LOUD, plus that speech understanding has improved.
As long as I keep this up daily, it keeps improving.

WHY HAVEN'T I THOUGHT OF THIS BEFORE?
maybe because I simply didn't believe in it anymore?

But rest assured I will keep it up right now.
Last saturday I even had my mom on the phone, first time in my life.
I understood her prefectly, except for one word...but we agreed we are going to keep this up together.

So, things are on their way.
On the move.
Now, this makes me even more curious what is going to happen next.
It becomes clearer every day, that I sure need a good programming.
Every day especially when playing, I notice where the sound is "off".

But that I have some speech understanding back right now, is already a step forward as you can imagine.
I try to tell myself that things will improve further and grasp onto that with all the life in me .....

Yesterday I found myself wondering how long it might take to go to a concert again and enjoy it.
My goal is december 4.
There is going to be an celtic super night in our theatre with Lusana, Martin Hayes and the Mairtin O'Connor trio.......anyone know them?
I know martin hayes from the BBC4 Transatlantic Sessions....

Berti

Innocent Bystander · Post by **Innocent Bystander** » Mon Aug 18, 2008 2:17 am

That sounds like hard work, Berti. Still, I'm glad you're hearing some improvement.

Berti66 · Post by **Berti66** » Thu Aug 21, 2008 11:31 pm

Disaster struck again. Good things have gone ........all of a sudden a complete fall back.....and......

This week I got the test results through the mail from AB.
They have decided the distortion is "normal"........ (but that there IS a distortion)
I cannot help getting really nervous........because now all depends on the appointment of coming monday.

The only options left are....

- check hearing nerve (not fixable if it is this)
- do two other kind of scans (looooong waitinglists)
- get an appointment ASAP with the audiologist AFTER a talk to the head of audiology department. (quickest and safest method)

What puzzles me is that hearing is really unstabile right now.
Few hours I hear reasonably and then all of a sudden it goes really downhill without any visible cause.
And the spot where the implant is, is really sensitive.

I have heard from a friend that she had bloodworks done and a same kind of test as I had last week, and all showed nothing.
They found it in the scans.
So the method is still not airtight.... (or how do you say that)

Must...... keep.....breathing.....
Berti

Cork · Post by **Cork** » Fri Aug 22, 2008 2:07 am

There's no point in getting nervous, Berti. Your appointment of this coming Monday is just another step. After all, you could have options, and, more than that, you apparently have CI friends who could help guide you through those options, along with the support you have, right here.

In the worst case, perhaps you could have troubles with your hearing nerve. That would be very unfortunate, but perhaps that could simply be beyond the current limits of technology. In that case, it's not anybody's fault, but simply a fact.

Yet, perhaps there could be other options, and you could have time to explore them.

So, don't worry about Monday. It's just another day.

:-)

Berti66 · Post by **Berti66** » Mon Aug 25, 2008 2:15 pm

HOLD ON TO YOUR STETSONS............
Because you are about to drop off your chairs.

Today in the hospital.
Chef the clinique not there.
Darn.....I had to "make do" with his collegue with whom I had bad experiences earlier this year.
BUT...........

HE FINALLY LISTENED..........
he compared me with some hearing person who goes sudden deaf.
exactly fits the bill.
he was absolutely NOT informed what has been happening last months because audiology department FAILED to inform him.
so he did not know about the test results.

I told him everything...........and he said, given my description, first thing he would think of, was, defect implant (inner part).
was speaking about maybe replace the thing.
that there were no guarantees given when he would.
that he would have to consult the chef TOMORROW and they would get in touch with me again.

SO........it seems, there AT LAST, finally, is an opening............
now that is more than there has been last 6 months.
the man REALLY seemed to care..........(surprise to me....)
so I went home, with a completely different feeling.........it feels REALLY STRANGE, believe me.

maybe, maybe.......
will keep you posted.
berti

Alan · Post by **Alan** » Mon Aug 25, 2008 2:24 pm

I hope this is an indication that you have rounded the corner and are on the right road at last!

Fingers crossed here!

devondancer · Post by **devondancer** » Mon Aug 25, 2008 2:46 pm

All the very best of luck. Keep hoping.
Roland and Lesley

Innocent Bystander · Post by **Innocent Bystander** » Mon Aug 25, 2008 3:30 pm

Communication is the hardest thing, isn't it? And Bureaucracies do not always do that well. Glad the message got through at last. Hang on in there!