how a deaf fluteplayer gets to hear again

[devondancer]

This is still hopeful, Berti. They want your thoughts and opinions, so make sure they have them. Make sure this man has a copy of all you can tell him before he has the discussion with Prof. Frijns. They are at least interested: if you can keep that interest alive they may well be able to help you. Tell them all you can about what has happened, what you had, what has changed....
Good luck, my friend.
Berti, we are away now for a few days to cope with a family crisis, but will be thinking of you... we are not ignoring you!
Lesley

[anniemcu]

Oh Berti, how exasperating! Please do not give up! I know it must be extremely hard to endure this, but like Lesley said, put focus on what you do have, and then keep going and trying to make progress with this. Hugs, strength, courage and love to you!

Sarah/annie

[mutepointe]

Please find or start a support group of people in your area. There has to be a community of people with hearing impairments facing similar challenges who understand. You have been through way too much to be there all alone.

My suggestion is to send an e mail back to Mike Sundler and ask him for suggestions on how your should proceed. Put the ball back in his court. See what he has to say. You can not be the first person in these shoes.

[Berti66]

mutepointe, I have been considering indeed doing this but there is no way to do it.
the thing that comes closest, is joining an organisation for CI users which I have recently done and will start doing translating work for them.
the point is, that here in netherlands you only hear the CI users which have GOOD experiences, the people who had it the other way round or ran into trouble with their CI later on, stay in hiding.
I am in fact the very first person who comes out and spreads the word.

I DO have one friend, who also has an CI and does also have trouble with getting her processor programmed well.
just because of the stubbornness of the audiologists, and them not learning to do the job RIGHT.

so I still have this in the back of my mind, and for the moment begin I just talk to CI users and my friends in here
it's tough, though..........let's look at it at the bright side and say, that this makes me grow......

berti

[Berti66]

yesterday I got another email from AB France, see below.
somehow I feel a bit better thanks to him.....
that test he mentions is TODAY.

Dear Mrs Peeters,
Thank you for your email and please be assured we will continue to try to do our best with you. I have had some further thoughts based on your comments, and how we might proceed. However, in the meantime I shall contact the Leiden team and think that it is a good idea to have the integrity test with Fanny Scherf next week.
Based upon that, we can determine the next steps.

Best wishes,

Mike Sundler

[Innocent Bystander]

Hope it goes well.

[mutepointe]

You will be in my thoughts today.

[Berti66]

wow........it's 10 PM here now and I just got home after a busy but GOOD day.
this has been the FIRST time I had a VERY positive experience, and have been able to tell the COMPLETE story to a lady from AB from Belgium.
she was so very nice to talk with, and I really had a feeling that she was listening and also was responding to what I was telling.
she had been emailed by Mike Sundler, the CEO from France, the day before so she was informed to a degree.
it took two and a half hours and I was tired afterwards but I did go out with a slightly adjusted programming which works better now and produces far less noice which is less tiring.
she said that more tests will be coming and we will meet again.
the integrity test of today showed nothing wrong (are you surprised yet? I wasn't) but the results have been sent to the ingeniors in France now to have a look at.
in a week or mabye two, the next test will be performed by my own audiologist.

but I already feel much better than few days ago and am happy with the little adjustments of today and the fact that now AT LAST someone seems to be actually listening AND caring...

[HDSarah]

Hooray! Berti, I'm so happy that someone is actually listening to you now. May it continue!

[anniemcu]

Finally! Someone who seems to actually be listening. May this be a turning point for you now, and the glimmer of hope become a ray of sunshine. You may not get all you want, of course, but to see/hear improvement again is very heartening.

[Innocent Bystander]

Good! Long may it continue!

[mutepointe]

I liked reading how this seems to be a first step for this new lady too and how she recognizes that this is going to be a process. And I'm thrilled to pieces that you had a positive experience today. We all needed you to have a positive experience.

[Alan]

We all needed you to have a positive experience.

Quite right... thumbs up!

[devondancer]

Excellent news! We, like anniemcu, hope that the glimmer of hope turns into a ray of sunshine. Good luck, Berti.

[Berti66]

meanwhile I have got the test results of the test of last week......
the ingeniors in France have had a look at them.
conclusion was that "in principle" the implant itself works OK but........they found raised values in electrodes 8 to 13 (there are 16), which shouldn't be there. They say, still no signs of ossification.
also, they suspect the electrodes 14 to 16 to be extracochleair, as in, lying OUTSIDE the cochlea, which they shouldn't be.

so far, the plans are as follows.
next thursday I have another appointment with my own audiologist, then he will perform another test, this time measuring the hearing nerve.
AB recommended trying a program with the electrodes 14 to 16 turned off, which we will make then.
If time allows I will further adjust my current program which is still working, as in, is no longer noisy.
But electrodes 11 to 13 need turning down AGAIN (note that this is the zone where the high values are measured) ...I have been suffering from this electrodes getting too loud all year (and since the beginning).
Those are the trebles and too much trebles influences sound by getting speech hard to understand, soft sounds coming in too loud.

I do have a direct line with Fanny Scherf by email so I can keep sending her email updates and corrections on the things she has written down last week regarding the hearing problems history.
I have seen her report where it sums everything up and it's a LOT.....so I read and fill in where I forgot things.
She said they are trying to get the story as complete as possible.
So contact is still going as it should. I am a bit more relaxed just by knowing they are INDEED doing everything possible to get things sorted out now.

But I have not touched my flute in a month.....trying not to think about that and use my energies for other nice things like my creative outlets.