how a deaf fluteplayer gets to hear again

[Berti66]

hi all.
things are moving but so slow you could barely see them move if you would sit there for a month watchin'.
the latest thing I have done is travel to antwerp march 16th to meet the prof surgeon.....
it took a full day.......three hours to get there, THREE hours wait, same amount back.
he's a nice man and he did agree surgery was needed.
the fact that it was 6.30 pm already of course had NOTHING to do with that at all (appt was at 3.20 pm)
the most interesting thing of that day was a remark of Fanny, my AB person who was there with me: we were discussing music and how I heard it and how it worked for me in the beginning.
I could STILL describe how things sounded and how I could recognize them etc and how I had started to LOVE opera, at that time.
when I told her I could compare melodies I heard on a computer say, to actual movie songs and how they were alike, she remarked: then you DO have a musical ear!
I stared at her.......ME? But how can you say that, with my hearing history and all (despite starting with music and playing in a group for a while in my teens) .
She thought that someone else would not be able to recognize and compare things with each other without having some kind of musical ear.
HUH??? I still don't grasp that.

at least I am feeling a tad better physically after the scary start of the year and even playing again.
hearing wise sound quality has gone further downhill unfortunately, in the range where the G1 to F2 notes fall on flute (so midrange) and there are quite some things important for speech comprehension too.
so I hear too much low pitches and trebles compared to the rest....

now the wait is for an surgery date....the point is they first want a MRI done, which involves removing the magnet in my skull, meaning that the weeks before surgery I will be without any sound already
I can only hope the date will be SOON for the actual surgery. although the prof said, two months...

all this time.....and for the outcome, we have no guarantees. I am trying to keep hopes up but have to admit that on the other hand, it's downright scary and on the day of the second hookup, I would definitely need a good whiskey to relax beforehand........

AB USA is definitely keeping themselves informed by getting in touch with me through email regularly to ask for news and what I thought of appointments etc.
the tech CEO is talking about coming to netherlands when schedule allows, for the hookup.
sheesh, I start to feel like a VIP!

on a more positive note I do make plans for AFTERWARDS....

[Jayhawk]

Berti - I had been wondering how you were doing...I thought the date for the appointment had passed or was coming soon.

Apart from losing the magnet so they can do the MRI (I can imagine having no sound would not be fun for a few after you've become accustomed to at least hearing something), it sounds like they have a plan and I'm very hopeful you'll be running around yelling at your neighbors for being too noisy in about 3-4 months!

As for a musical ear...I don't think you can play flute without one. Your embouchure changes the tone of each note so much you always are doing minor pitch adjustments...which takes a good ear. So, despite your hearing problems, I agree with Fanny...you've got a musical ear!

Take care, and hang in there during the wait.

Eric

[mutepointe]

Berti, it takes you until now to START TO FEEL LIKE A VIP!!!! Get you head within whacking distance of my hand and I'll knock that magnet out of your head myself. If things had gone all well for you, you would just be one more person with one of these things in your head. Because so much has gone wrong, you are the person that they need to study to make things better for everyone who follows in your footsteps. There's nothing like being a lab rat, especially when you didn't sign up for the task. One day all of this stuff (or better) will be standard for folks with your type of hearing loss and everything will go as smoothly as getting your tonsils out. Being part of science is too important to minimize. Wishing this all works well soon, you deserve it.

[Innocent Bystander]

Glad to hear things are moving, Berti. It might be worth raising a separate thread for the "Musical Ear" issue. ...Although I'm sure nobody here is an any doubt of you having one. I mean, a thread discussing what constitutes a Musical Ear. I suppose your AB person only has your word for your own musical ability, and they have to be their own Devil's Advocate, I imagine.

Yep, You're a VIP now! Take care of yourself, and remember, you're fighting your corner not just for yourself.

[Berti66]

I cannot remember when the last update was, must have been march/ april.

Meanwhile things have gone further downhill.
Physically I have started feeling worse, SO bad that I am no longer able to wear my sound processor.
SO, no longer have sound, because wearing this thing causes pain within minutes.
Five weeks ago I did have an spinal tap because my neurologist wanted to be SURE there was nothing else wrong....... I developed a leak afterwards.
This caused my body to totally give up......it was the very last drop it could take.

Situation NOW: no sound, am no longer able to leave house without someone driving me where I need to go (and I don't have such a person) , and even then cannot take longer than one hour.
Need to lie flat most of the day (cannot always because I do have a housekeeping to run and daughter to take care of) .
If I don't, serious head problems develop, pressure and when I continue, pain.

I have also developed heart rhythm problems, the last few weeks.
No heartattack but LIKELY caused by stress, now taking betablockers next to the painkillers (NSAID).
This saturday again I had the emergency GP visit my home second time in two weeks time. She told me there was nothing she could do for me.
I have been emailing the hospital in antwerp with no result. Only thing I was told is that the surgery was "requested" with the health insurance company.

TODAY I got an email from an friend, that she phoned the health insurance company and NO SUCH REQUEST WAS FOUND IN THEIR FILES
They explained each filing for things, gets a registration number and none such was found coming in from belgium.

I feel so totally lost, and left on my own and not even able to DO SOMETHING ABOUT IT.
I just sent a very mad email to my AB contact person Fanny Scherf, who was after things and she cannot help it at all, it's the fault of the hospital.
I feel NOT being taken seriously and my body lets me know IT IS TIME.

NOW!!!!

[Innocent Bystander]

I knew you were bad, Berti, but I didn't realise it was that bad.
Is there any point in putting us in touch with your AB person, or with the Hospital? Maybe we could badger them a bit. Or at least let them know that there are concerned people out there.

[devondancer]

Oh, Berti, I am so sorry. I wish you lived nearer! Please know that you are in all our thoughts, here on the board, and if there is any way in which we can be of practical help, please tell us.
Try to stay strong...which I appreciate must be almost impossible! You will win in the end.

[Berti66]

thanks.....

and the very moment I was reading your replies, an email came in from antwerp.
she let me know that she REALLY had sent that request PER SNAIL MAIL, with provenance in the form of a copy in the email.
here, it is known that mail between belgium and netherlands tends to get lost.
she "promised" to phone the insurance company.
I have asked her why she did not send those papers by fax or email, that would have been much faster and safer.

I will keep you posted.
the adventure continues.

[Berti66]

another post: they are going to fax/ email the papers to the insurance company.
she excused herself because I need to suffer so much (YEAH right...)
she urged me to email her, whenever I have questions etc.

I have let her know I have no questions whatsoever, just that I want an MRI ahead of surgery and talk to neurologist.
for all the rest, it would be FINE.
need to organize an ambulance to get to the hospital or someone driving me (little chance) when time is there.

[anniemcu]

Welll.... that's at least a little better! I still want to kick some rear, though!

[devondancer]

There are still people fighting for you, Berti. Not just us, either! I hope that you see much more progress very soon.

[mutepointe]

You have been in my thoughts the last couple of days and I was getting ready to invade your privacy and send you a PM to ask how you were doing. Now I know why. So glad there was some positive news there but you need way more positive news.

[HDSarah]

Berti, my thoughts are with you. May this roller coaster ride end soon, and well.

Sarah

[Berti66]

in last update I wrote the files sent to the health insurance company "got lost" and how they never received them.
promises were made *again* that files would be sent AGAIN and that they would fax them TOO.
over an week ago.

earlier this week I sent the hospital an email how things were standing.
no reply.
so yesterday someone AGAIN phoned the health insurance company to check ourselves.

HOW DO YOU THINK I FELT when I read, that they had received NOTHING, not even a fax!!!!!!!!!!!!!!!!!!!!!
I forwarded that email to my AB contact person and she was too, STUNNED.

I think they are lying upon me and not doing anything AT ALL and don't take this seriously AT ALL.
it can go wrong ONCE, but a second time and a fax not arrived???????

summer is nearing now and......oh boy I am SO DONE with this all......

[Berti66]

I cannot believe this.

I just got a letter from Antwerp hospital WITH the papers for my health insurance.
If I could deliver them myself please.

NOWHERE in the entire letter it is mentioned that this is URGENT.
Even the wording used in the letter, is totally toned down.

I have been to my health insurance and they told me when the hospital would contact them themselves, they could get the green light SOON.
But NOT when I come to deliver a letter, which has to be sent to the right department, in THIS kind of wording.

I am SO TOTALLY BEYOND MYSELF about all this STUPIDITY and IGNORANCE.
This way, it is going to take MONTHS again before they even get a REPLY!!!


SO, the promise they made to send the papers to the health insurance AND fax them, was just NEVER KEPT, they simply didn't do it......... OH DAMN IT!!!