how a deaf fluteplayer gets to hear again

[devondancer]

I have been holding my breath for a long time, Berti, and my fingers are stiff from being crossed for you! Any news?
Lesley

[Berti66]

ummm......

YES I know I owe you all an update.
Although not too much happened......

I did get a speech comprehension test few weeks ago, and the score was 50% WITH hearing aid in left ear.
(comparising with 90% WITHOUT hearing aid when things worked OK jan 08)
That is a test where you hear words over the speakers which you have to repeat.

Ok, last week I got my processor swapped for a "new" one, which turned out not to be new when I was already home......the seal of the box was broken according to my audiologist.
Then I developed pain again and started taking painkillers again, ibuprofen which also works anti-inflammatory.

Last days have been uncomfortable, waking up very early with throbbing pain and having to get up to take painkillers.
Today it is a tad better again.

I have started wearing my hearing aid again in my unimplanted ear, because this "fills in some blanks" and the total sound is a tad more complete compared to my processor alone.
Tomorrow I can pick up a NEW hearing aid to testdrive.
Today I have FINALLY played again first time since WEEKS, WITH hearing aid and processor on it is about do-able (not enjoyable sound but enjoyable enough to play and relax a little bit.


I have received email from the CEO USA of AB, asking how I was doing (GREAT that he did this) but I had to disappoint him, and told the latest.
There seems to be a team within AB which looks into cases like mine so he will now forward my name to that team.
Fanny Scherf, my contact person in europe with AB is GREAT to work with and really biting herself into this "case" and doing everything possible that she can think of.
Right now she is going to talk to another professor, this time in Belgium, upon return from her holidays which is after 17th.

I am trying to keep going.....have on and off be thinking o quitting music and sell flutes and then today I was glad I did not do that yet, but then, I MISS so much how it was, and how I enjoyed the music and could learn tunes which I cannot do right now.

If there are people on facebook reading this topic, feel free to add me to your friends list, I would be happy to have some friends online...
I am still trying to stay part of chiff as long as I can
goodnight for nowxxxx

[Innocent Bystander]

Speak the truth and shame the devil, my old Mother used to say. No point in hiding things, especially that, to people who may be able to help.
I'm sorry to hear there is no improvement - yet. Selling your flutes would be an act of despair.

[devondancer]

Thank you for replying, Berti, especially when it must be so difficult for you. I wish we could help, but remember that you are not short of friends online. We are all here for you, going through this with you and hoping so much for a good outcome for you.

They are still listening to you, still interested in your case, my friend. This is more than you had a few months ago. Keep talking to them, and to us, and do not despair, although I know it is difficult when you are in pain. Keep your flutes as something to look forward to when things improve: you never know what is round the next corner.

Lesley and Ro

[Berti66]

yes, the fact that I now DO have people around who are actually listening (yesterday I realised, that now I have people all over the world working on my case!!! the States, France, Netherlands) is what also keeps me going right now.
And that lady from AB, Fanny Scherf, knows that pretty well, hence the intense email contact.
When we first met, she described me a case, from when she still worked as audiologist......they worked THREE YEARS on that case until they finally found what was wrong......
That's the kind of people I need

And sure, I DO keep my flutes still, and I DO still play now and then. Some days that goes reasonable and can I even enjoy and relax, and other days it so totally sucks, sound wise.

So, I am still here but in my mind things are still going, like, I better prepare myself for the worst outcome....sometimes I wish I had some music friends around here to be in touch with on a more regular basis, just to keep myself motivated.....
Fanny Scherf also told me "they are not done with me yet" ........so there is more to come.

At least I try and do other things to distract myself and it makes others around me seem to think that I am doing better and even be happier......but you all know, that life goes on and we all have to keep going and face things instead of sit on the sofa and have too much time to think and make plans to strangle certain people......
No, I am not happy and don't see any fun in things most of the time but trying very hard to survive and keep breathing.....

It's sad though that I only seem to have my friends online.....what I need most in life right now is someone who comes and gives me hugs and support.

[anniemcu]

Keep hanging in there, Berti! I wish we had the option to show up every now and then for some 'real life' tunes! Know that you are thought of often.

Hugs,
Sarah/annie

[devondancer]

We are all still with you. Keep talking to us and we will be there!

[mutepointe]

OK everybody. Road trip to Berti's house.

Berti, I know how you feel about wishing that the people who are in our real lives had more in common with us. I could go on & on but I won't. I do wonder though how folks manage to breath who never make music.

[Berti66]

this morning I woke up and I REALLY feel like strangling and kicking someone......
somehow I feel SO frustrated since yesterday and waking up like this is no fun at all.

my audiologist has been letting me down with responding to my email for a new appointment so far and speech comprehension has been running down so fast last days that I fear the worst....
in the morning things seem to work best and then from afternoon onwards it sets in again.
aside from the physical side (pain in skull and swelling etc)

so I REALLY can't wait till the lady from AB gets back from her holiday next week, as it seems everything depends on her right now.
I wish there was something I could do....

I have been playing yesterday and it came clear that I sure do at least need to try get a new program for the processor, as I barely seem to hear the upper octaves and this is not as it should be.
now that I am trying out a hearing aid in the left ear, I can tell when playing what I am missing.
it's weird to hear particular pitches on the right and then higher pitches on the left.......

it has come clear to me that the sudden changes in sound and discomfort are NOT due to the program nor to the processor......I have tried different programs and now have a different processor for a week and it KEEPS happening......so .....draw your own conclusions.

another one for the dairy I am keeping to send to that lady next week.
gnarsing teeth meanwhile..... this afternoon I have to visit the hospital for a standard twoyearly check which I am absolutely not willing to do as this team has been letting me down totally especially since they KNOW about my problems and do totally nothing about it after I told the ear specialist I saw this summer....but they are gladly planning me in for two yearly check ups to stuff their pockets with insurance money.
saillant detail: the doctor I am seeing today is not even specialised into cochlear implants at all.......so he knows NOTHING about it........my own doc "is busy".
what the.......ehh heck?

[kkrell]

(pain in skull and swelling etc)

Ummm... aren't those medical problems, not necessarily implant problems (although certainly may be caused by the implant, ie: bad installation, allergic response or rejection)? Is anyone addressing the flesh & bone side of your issues?

[Berti66]

kevin, yes those are medical problems but they definitely are implant related so I need an ear specialist who is also specialised in implants..........there the problems start.
so today I get to see a specialist (see last post) and then I get just an assistent who knows NOTHING of those trouble....
from beginning onwards there has been a certain degree of physical discomfort which has aggravated further during the years esp this year (accident related? dunno)
so to address those problems I do need a specialist in implants which I am not getting an appointment with.

fanny scherf, from AB is on holiday currently and she returns next week, then she was planning to take my "case" to belgium and discuss.

today in the hospital I am going to try and see the head of audiology department and complain about the NOT treatment I am getting there and them cashing insurance money for NOT helping me plus details.
GRMPF.

[devondancer]

I wish we were near enough to help, berti, or just to have coffee and a chat! Good luck today: we are all thinking of you.
Lesley

[Berti66]

well I just wrote a story and it disappeared so here goes again.
the visit to the hospital.

first the video speech comprehension test, with processor in right and hearing aid in left ear.
with lipreading alone: 38%
with hearing alone: 68%
both lipreading and listening: 99%
BUT, it was in an audio booth, no other sound, by NO WAY a daily life situation so this is not comparable at all and doesn't say much.
I only can comment, that when things were working, I did NOT need lipreading and an hearing aid in left ear.

then a talk with an audiologist......things went REALLY out of hand at first and the lady wanted to leave the room with my files and no further talking because I was angry (which I wasn't, just disturbed, slight upset as she saw things wrong and I was trying to prove this).
I was able to keep her in the room and we talked, I really showed the back of my tongue, emotions and all, describing how well things were going and what I have ended up with NOW.
that no one was willing to help me so far, as she commented I wanted to go from hospital to hospital because I did not BELIEVE anyone was WILLING to help me.
well you all know the stories......

we spent an hour talking and finally she saw WHY I was being such a hard and difficult person (as she described me like that!) and when I left, we had both calmed down and she PROMISED to bring up my case next week in the team meeting and also will contact the lady from AB to try and work together, which is what I asked for, instead of having everyone working alongside each other.......

when I went home it was with a double feeling, on one hand I felt like needing a REALLY stiff drink because of all the emotions and such, and on other hand, I had a sense of achievement of having been able to show her my point and opening up to each other.

let's see what's up next.......whew.

[HDSarah]

Berti,

Kudos for managing to communicate successfully in such a difficult situation! I'm sorry this is such a long and difficult process, and I hope it will end with you pain-free and able to hear and play music again. We are all rooting for you. You can tell us the unvarnished truth and we can at least let you know we care.

[devondancer]

Congratulations, as Sarah said. That was a very difficult situation and it looks as if you have turned it round and made it work for you. Well done, my friend. I hope progress begins again now.