how a deaf fluteplayer gets to hear again

[mutepointe]

How lucky they are that guns are harder to get in your country than America. Geesh.

[Berti66]

oh but my brother does have a collection and he would be willing......

[mutepointe]

Could he pull this off?
Ezekiel 25:17

[Berti66]

heh.......I can manage that myself better, I think he is too much of a softie.
I am the one who is dangerous.....

[Innocent Bystander]

People don't realise that faxing is a two-sided process. I've been responsible for installing a few automatic Fax systems where Maintenance Orders were faxed directly to contractors. They all failed because the contractors could not - or would not - keep sufficient paper in their fax machines. And they turned the fax machines off, because you get fax spam just as you get email spam, and it costs you paper. It got to the point were customers would ask us about installing automatic fax processes, and we would say "no". Nowadays they email the Works Orders.

It's a disgrace that they are asking you to send your own details, although under the circumstances I would seize the opportunity.

[Berti66]

meanwhile things changed AGAIN

now they have decided to file themselves INCLUDING the needed urgency letter (AT LAST!!!) AND the needed MRI which they first refused....

this was emailed to me by my AB contact person.
let's hope that THIS TIME they WILL follow through and WILL send the letter REGISTERED AND SIGNED FOR so that it will arrive FOR SURE.

and let's hope the urgency will be taken seriously by the health insurance, and leads to a surgery date SOON.

so, this is how my morning started few hours back and I barely believed my own eyes.
I do hope for them these are no empty promises again.

will keep you posted, we will know soon enough....

I really miss being without any sound at all because I just cannot bear wearing the processor and on bad days, lots of thoughts escape my mind with scenarios like possible outcomes after surgery, and that I should keep in mind the outcome I do not want, and be prepared to continue my life TOO if that happens... I know there is a chance...as we won't be sure until AFTER surgery....


edit: I obviously have too much time to think...

[Innocent Bystander]

If you have too much time to think, while you are unwell, try Giles Brandreth's helpful tip.

Think about the ten people you would like to be in a worse state than you are.

And if you finish that to your satisfaction, think about exactly what ailment and condition they should have.

[anniemcu]

If you have too much time to think, while you are unwell, try Giles Brandreth's helpful tip.

Think about the ten people you would like to be in a worse state than you are.

And if you finish that to your satisfaction, think about exactly what ailment and condition they should have.

IB, you are e-vile!

[Berti66]

if you just saw something moving sloowwwwwwwly it might be my situation.

after getting more and more fustrated with the antwerp hospital because they just kept making promises, telling they would do things and nothing happening I got TOTALLY FED UP.
I kept checking my health insurance company if there had arrived any surgery requests and there had not, despite what the hospital told me.
it can go wrong ONE time with the snail mail but not EVERY (three) time...
that plus other things led me to make a decision ......

I quit.
I mailed my contactperson about what a STUPID hospital it was (her ex workingplace) and that I could just not believe it but did not want to carry on there.
I decided to go back to netherlands, and try again.

she immediately mailed the hospital (I sent her a list of preferred hospitals, there were only three) that was first on the list and meanwhile they had a meeting last week.
NEXT tuesday I have an appointment there and two friends coming with me for support.
the hospital wanted me to first see audiologist and ear specialist and then AGAIN have a meeting *sigh*

I am trying to just keep going, first 4 hours of the day I do my chores, rest of the day I rest on the sofa...I don't wear the processor when I don't need to, just to give my head some rest.
WITHOUT wearing it, it's tough enough to cope with the symptoms.....

[Berti66]

My name is Berti, and I have been fluteplayer for 6 years....I play an Aebi keyless and an Bb
I fell in love with the sound of the flute when visiting a chap in germany named Colin.
Since then it has been an adventure.
Especially because I do have such a serious hearing loss that officially I am deaf but I used to be able to hear somewhat with a hearing aid.
When that no longer worked sufficiently, I opted for an cochleair implant.
Got one oct 07 and two months after that, I could hear better than I had since I lost my hearing.
It was almost like suddenly having normal hearing.

Then two months after that, problems started.
I told the hospital, got no help at all, was left on my own.
Got desperate because I didn't want to lose the music, I had fought for that so hard.....
During the last 2,5 years things went further downhill and I have seen more hospitals and still got no help, what's more, they didn't even get things sorted out WHY it went wrong or WHAT was wrong.
Wrote to the Advanced Bionics people, the manufacturer of this implant see www.bionicear.com
Meanwhile developed more serious symptoms when wearing the soundprocessor, the outer part.

January this year, was HELL.
But finally the manufacturer did get me an appointment in Antwerp and I was heavily tested....for three hours........conclusion: failing implant, needs replacing.
I chose to have the surgery done in Antwerp but the hospital failed badly because they needed to request the surgery with the health insurance company, and it was URGENT because meanwhile I was using morphin derivates frequently.
Despite their nice promises I got NO surgery and june I decided to move back to Netherlands.

Now I am visiting VU Amsterdam, and today I am off for a PET scan.
They didn't want to take over the entire advice of Antwerp earlier this year and want to do their own test.
The manufacturer has already agreed to replace the implant under guarantee.
Currently I am struggling to keep things up.

I DO keep tryinng to keep my futeplaying up but wearing the processor for longer than 45 minutes causes a lot of pain and discomfort, nausea and sometimes even getting lightheaded.
I am physically, emotionally and mentally so worn down that I can no longer undertake much....if I go out for a day I need three days to recover.
Its hard to keep myself motivated and especially because I am a divorced single mom.
They say, when the going gets tough, the tough get going.....yeah it used to be like that but I have reached a point that quite often scares me a lot and where I don't recognize myself.
I used to be a positive person who believed in the good of people.....this no longer goes for those in the medical profession, at least, here.

Whenever I am able to pick up my flute and also my whistles, I do STILL remember what it used to be like.
I remember that I was trying to play by ear shortly before things went wrong.
That a whole new world with new possibilities opened up to me.
To just get put on hold.......for who knows how long.
Currently I am seriously considering a plan B, giving up music and get on with life but I am not yet ready to do that.......I want to keep my music as long as I can because its part of my soul.
I would still live yes, when I gave up music.
Breathe in and out......have a heartbeat........but it is not the same without music.....

[Berti66]

Since this thread has become a bit long winded and hard to follow, there is now a new freshly sprouted one.... the deaf flute player, the sequel.

viewtopic.php?f=10&t=77146

berti

[jim stone]

[ Political comments removed. - Mod ]

Good luck. Thoughts and hopes are with you.

[MTGuru]

Let's merge these threads back into the original, and proceed from here. There's no length limitation on a thread, and this makes things a bit easier for us. Thanks! - Mod.

[Berti66]

ok thats fine with me.
meanwhile had a PET scan at the new hospital (looking for infection in soft tissues) and next tuesday the other PET will happen, this time for checking the same in bone.....

otherwise, not much news.
changed attitude again.....decided to be extremely stubborn .......
daily flute playing: one to two hours depending on how I feel.
yes I do wear the processor for that.......yes it gives more discomfort but worth it.
and I found some great cds on the last bloglink, plus re-discoverd mary blacks singing...both on my ipod now.
had to adjust the ipods volume downward (the max setting that you can adjust) to only 70% max.
otherwise could not turn down the normal volume far enough ........hurt like hell....

first flute sold (aebi Bb to Gabriel) but money will go in restored antique keyed flute, speak about touching new grounds, meeting new challenges....
what do you mean, I make my own happiness?
AND NO MY AEBI D IS NOT FOR SALE.....

[Jayhawk]

Good attitude Berti! Stubborn is extremely useful when something like this is going on.

I'm glad to hear you're playing again. Keep us posted...is a new unit still in the plans?

We're all cheering and praying for you here stateside.

Eric