how a deaf fluteplayer gets to hear again

[Innocent Bystander]

It's a struggle. You are doing your possible. Have a drink for me, Berti!

[Berti66]

yesterday to the audiologist.........the sweetie came to his work, especially for me!
he is trying to get his study finished this month so in fact was too busy but told me that he just has to make choices and that he DID choose to make time for me.

another speech comprehension test, score the same as last time, around 50%.

it was a black afternoon.
I heard myself say, that for the time being I am going to stop making new programs until Fanny Scherf from AB, comes up with something.
We DID make a new program by the way, using a different method which gave me HELL in the trebles range......my point was, with lowering the trebles, I lost a lot of things and sound quality, so I needed some more trebles.
we did end up with more trebles and it made my whole right side hurt like HELL.......makes it clear there is something really wrong inside my head....point taken.


now the wait is for fanny.....
I feel sad.

[Innocent Bystander]

Sorry to hear that, Berti. Waiting is one of the hardest parts.

[devondancer]

We too are so sorry, Berti. Please keep talking to us all and let us do what we can to cheer you up. We are all here for you, and do not mind wha you say, if it helps you! You are very much in our thoughts over this holiday period.
Lesley and Ro

[Berti66]

*thank you*
I really needed that.......I was just sitting in tears not knowing what to do and realising what is happening. Lots of thoughts going through my mind.
I am very worried about what's going on in my head (aka, pain I am experiencing) and wondering if now things are gonna change.
Someone mentioned that now my cup is full. What does this mean? Will things change now because I have used it all up, so to speak?
I dunno.
I admit I am scared.
Tomorrow I will write to fanny scherf for the latest updates.
But I dunno......
If you could see me sitting here on the sofa, tears in my eyes and I REALLY dunno what's next.....

[HDSarah]

Ah, Berti, I feel so bad for you! I wish I could make things better. But do know that, powerless as we are, there are lots of us out here who care and who hope for the best for you.

I'm so sorry you're in pain on top of everything else. It's like being kicked when you're already down. When I have a bad headache (remnants of traumatic head injury years ago) it wipes all the joy out of life. Head pain makes it hard to think, read, or do anything to distract myself from the pain, and not knowing when it will end becomes a heavy burden. (And I'm a whiner; I only get occasional pain and it usually only lasts a few days at a time.) I'm guessing that's a pretty common response to head pain. I hope they get your pain under control, and that hope returns again, and that they make progress on getting the implant to work properly so you can enjoy playing music again.

[mutepointe]

Dear Berti: I'm another person trying to give you some more energy to keep taking things one step at a time and wishing things were so much easier for you.

I was going to share this story with you last month and then telling you slipped my mind and Sarah's post made me remember. I had been fighting for one person for 10 years and he finally got what we were fighting for. I wasn't on his team anymore to find out what changed but a local judge recently made a class action decision making the same points that I had made in my arguments for 10 years. I wasn't involved in this case either but I still cried when I read this in the newspaper. He then made a decision requiring the State of West Virginia to adequately serve folks with Traumatic Brain Injuries. That's where Sarah comes in. I just read in the paper the other day that the State of West Virginia is appealing both of this judge's decisions to the West Virginia Supreme Court. The state will lose and why they're even fighting is beyond me.

My point of telling this story is to encourage you to keep working towards victory. I would have liked to have left out the part about where it took over 10 years for our fight and hope your fight isn't near so long.

And as a footnote, I would like to add, that while the state fought us for over 10 years, we were making the state fund the services that we wanted at four times the cost than if they would have just given us what we wanted, not to mention all the costs of litigation. We kept pointing this out to the state too.

All of this may not have made a lot of sense but I didn't want to go into the specific details.

[Berti66]

sarah and mutepointe, thanks for sharing.......I appreciate this so much.
my only comfort for the moment is that now I have at least people working on my case, in the USA, in France, in Netherlands.....which is more than I had so far.
I don't want to make all this more dramatic than it already is..........because it just is.....I know you agree.

I am not one to easily giving up, remembering things from my life which lasted also a much longer time than this, but then there was no discomfort and no hearing and possible loss of music, involved.
I have never realised how much it can actually hurt, when you have a passion for something and then lose it, at a point even, when you were just starting out and getting it......

another little comfort is that my sweet german friends tell me that each time they meet me and hear me play, I seem to have made progress STILL.... DESPITE all this stuff.
I have come further than I actually thought I would (mind you: as a deaf person!!) but then, I am nothing compared to you all
and I keep telling myself that if I would NOT have gotten the implant, then things would have been much worse, music wise.

hmmm a lot of reasoning on the early morning .......

[devondancer]

Berti, do you have to be in pain while you wait? Can all these specialists not give you something to help the headache, at least? Please ask them for help: having to be in pain as well as go through what you are going through is too much. If they cannot / will not, what about your own doctor? You need some decent analgesia, and life will look a little brighter again. Pain makes you see everything through a dark fog, and it is so hard to stay positive when you hurt. Get something to help in time for Christmas, my friend. Then you will be able to keep your chin up and look forward to better things in 2010. We are all wishing for them for you!

[Berti66]

Well I DO have painkillers which are also NSAIDS (anti inflammatory drugs, ibuprofen on prescription dose) and I could take three daily if I want but I am trying to only take when really needed.
It is kind of do-able but during day things start to get worse and in evening it is hardest.
Also affects my hearing.

Ah well I will manage another email will go to Fanny tonight or tomorrow morning with the latest updates so she has something to do upon return from holiday...hehe.

[Berti66]

this morning when I got up and reading my email I almost dropped off the sofa upon reading THIS!

Hi Berti,
I recently heard that you are still having difficulty with your implant. I’m so sorry to hear that. I would like to bring you to California in January to see if we make things better. Please let me know if you would be interested in coming to California and we can work on the specifics.
Have a great day,
Mike

Mike Brownen, MS, CCC-A
Director, Technical Services
Advanced Bionics Corporation
877-721-4900

I have already been in touch that I would be willing to go ANYWHERE but that I like to see everyone working together so suggested he gets in touch with Fanny Scherf/ the AB europe people, who will be able to update him if they have not done so the last weeks.
Aside from that, I see practical problems: I cannot afford the trip nor the stay.....and I dunno what my health insurance is willing to do.
But that's for later......it's good to know that they ARE after it!

Berti

[mutepointe]

He said "bring" you to California, which is different than he would like you to "come" to California. Explain to him your financial situation (briefly) and ask if assistance could be provided. This may very well be a business expense that they could write off on their taxes. I'm always amazed by how much money corporations have to throw around.

What good news you have there Berti.

[Berti66]

further news.........fanny scherf mailed me today that she had a meeting with the prof in belgium and he had a look at my RX and CT scans and could see nothing wrong, after that they discussed the full report fanny and me have made.
suggestion is an appointment january 14th, now I am trying to sort things out travel wise to see if this would work.
I have let her know that AB USA mailed me this suggestion so they should be in touch with each other shortly.
seems there is a lot on the move right now.

I will be interested to see where this is going....

half an hour later I received email from Mike Brownen that all costs are covered.
Fanny has sent him email so they are in touch now.

*speechless*

[anniemcu]

Most excellent!!!!!!!!!!!!!!!!!!!!!!!!!

The only thing wrong with this picture is that you still be way too far away. LOL!

[devondancer]

Wonderful news, Berti! What a Christmas present! We are both so happy for you! Now you can relax and enjoy the holiday, safe in the knowledge that the New Year is off to an excellent start for you!
Happy Christmas.
Lesley and Ro