how a deaf fluteplayer gets to hear again

Cork · Post by **Cork** » Fri May 09, 2008 3:10 pm

Berti66 wrote:...I won't be going alone this time.

June 19th? I'm sorry that you must wait so long.

However, maybe it's good for your CI to have this time to rest and recover, to get ready for the next stage.

And remember, you didn't go alone on your last appointment, and you won't be going alone on your next appointment. After all, we are here for you, too!

Meanwhile, keep us up to date with how you feel about things.

:-)

mutepointe · Post by **mutepointe** » Fri May 09, 2008 4:17 pm

What a most lucky day to have an appointment.

http://en.wikipedia.org/wiki/Juneteenth

Berti66 · Post by **Berti66** » Tue May 27, 2008 2:15 pm

The closer the date of june 19th comes, the more nervous I get.
BUT: yesterday, I started to play again after an almost two months break.

Does it sound good now then? No it does not.
Especially the frequencies between 650 and 1000 hertz don't.
The highter the frequencies, above 2000 I can hear fine.......as in: notice the sounds, not ENJOY the sounds.
This is information that I am going to take to that appointment.

But I have come to the conclusion, that the flute has just become too much a part of myself, to ignore it.
Then I better keep playing on a therapeutic basis and stick to slow tunes for a while, which is very therapeutic on itself

The more time goes by, the more I seem to think it all has to do with th programming.
If I had the money, I would just purchase the computer program the audiologists use to program my processor, and the cable needed to connect myself to my laptop, and do the job myself.

Nice detail: this week a dutch person has brought out a thesis on the subject of programming of CI processors.
She ran an experiment, which showed clearly that it would work MUCH better if the people could do their OWN programming, the results were MUCH better than when "pro's" would have done the job.
Exactly my thoughts.........dunno what I am going to do about that.

But I am okay, mindwise, now.
Have taken some steps for major changes in my life, which have nothing to do with hearing, and gradually I start feeling better every day.
More power to me.
YEAH

Innocent Bystander · Post by **Innocent Bystander** » Tue May 27, 2008 4:29 pm

Good, so! Keep us posted!

Cork · Post by **Cork** » Tue May 27, 2008 4:36 pm

Hi, Berti,

As your next appointment wouldn't be until the 19th of June, and with my understanding that such a long wait could be difficult for you, I thought it better to not "bother" you about how things are going, but I am glad to see your post!

That said, however, I do have a question, please. For instance, a tone is a physical vibration, for instance, as A=440 Hz, the tone "A" occurs at 440 vibrations per second, and, moreover, perhaps vibration could be perceived in a number of ways, perhaps as by one's embouchure, by one's hands and fingers, and by other ways, too. So, as my question, can you "feel" the individual tones of your flute, that is, without listening, and with your eyes closed, can you feel any one of the tones, and, more to the point, can you feel the differences between different tones?

As an example, try playing a tone, any tone, along with a tuning meter, until the tone you play is correct according to the tuning meter, all while "feeling" the vibration of that tone. Then, try another tone, while "feeling" for any difference between the second tone and the first tone. For instance, "just" intonation, as the "language" of Baroque music, occurs at musically "even" harmonics, therefore, at "even" vibrations.

One of my favorite things to do is to play a flute at night, in complete darkness. Moreover, given that I cannot see what I am doing in such a circumstance, and given that each tone could have its own, unique vibration, I am wondering what your experience could be, my dear.

It has long been said that the human body can adapt, in numerous ways.

;-)

Berti66 · Post by **Berti66** » Mon Jun 23, 2008 2:19 pm

here I am again.
I am at a loss for words.

Last thursday I had the second opinion.
It turned out that there was ONLY an appointment with the audiologist in the other hospital, NO tests were run NO seeing an ear specialist too.
The man meant real good, spent two hours with me connected to a laptop trying to make a new programme.
But it ended like : I don't know........

So, I still don't know either.
It looks like I am stuck like this for who knows how long.
All this after the fantastic promising start.

No dreams going to come true, no FINALLY get a social life because I would be able to finally follow, no study, no music, no nothing.
All this, because from one moment to the other, the stupid thing caused trouble and no one over here seems to know the answer.

I REALLY wish I had the money to catch a plane and FLY TO THE USA to Advanced Bionics, and have THEM check everything out all over.
I know there are tests that can be done, but no one seems to see any need to do them NOR to call the people from Advanced Bionics Europe in.
I seem to have no rights.
I had the second opinion and now I am stuck with it.

There is no real speech recognition anymore unless someone sits close to me, or the sound does come directly into my ear, like with phone or a mp3 player. Then I seem to be able to still have some speech recognition.
This should TELL someone something, but it doesn't.
The fact that it has worked so well and stopped in a single moment, same story.

I am at a loss for words.
Sheesh.

Berti

djm · Post by **djm** » Mon Jun 23, 2008 2:29 pm

That really sucks, Berti. I wish I knew there was something I could say to make it right. All you can do now is hang on and hope that something better will come along. You could at least write to Advanced Bionics and tell them what a crummy product theirs is. See if you can move them to do something for you.

djm

Innocent Bystander · Post by **Innocent Bystander** » Tue Jun 24, 2008 12:40 pm

Ach, Berti! I'm so sorry. DJM is right though. The only thing you can do is kick up a stink and make a nuisance of yourself.

jim stone · Post by **jim stone** » Tue Jun 24, 2008 2:00 pm

Why I am so glad (having dealt myself with hearing problems)
we have the medical system we have here in the USA.

Berti, can you come to the USA? Where are these people
located? It's not so terribly expensive to fly and we're
located all over the place, us chiffandfipplers, probably someone can
put you up.

Seriously.

I may be able to put you in touch by e mail with people
who have the expertise to help or who know those
who do. But I can't do this all for you. Probably the
expertise to fix these problems is available here,
but you need to put some energy into finding it.

Berti66 · Post by **Berti66** » Tue Jun 24, 2008 2:03 pm

jim, that would be a terrific idea , the website is www.bionicear.com and I am sure you can find where they are located.
But then, they must be willing to see me (point a) and also, who is going to pay for their time (point b)?
If they stand behind their product at all, they should be willing to help.....

Berti

jim stone · Post by **jim stone** » Tue Jun 24, 2008 2:21 pm

OK I have to go out now, but I am willing to put as much
energy into this as you are. I need to reread the whole thread.
I am in touch with hearing experts and St. Louis, where
I live, is a center for this sort of work, I believe.
Barnes Jewish Hospital is here and I know
people who specialize in this.

But you must do more than I do. Also let me ask
people at large who may have expertise to get on this.

Back later. Jim

Berti66 · Post by **Berti66** » Tue Jun 24, 2008 2:33 pm

jim,

I really had to read this TWICE.
Let's stay in touch and who knows.......

Thanks!
Berti

hyldemoer · Post by **hyldemoer** » Tue Jun 24, 2008 4:02 pm

Berti66 wrote:No dreams going to come true, no FINALLY get a social life because I would be able to finally follow, no study, no music, no nothing.

Hi Berti, I'm sorry that I haven't been following this thread as close as I probably should have.

Have you tried networking with the self help group named ALDA (Association of Late Deafened Adults) yet?

There's at least one ALDA member living in the Netherlands because they list it at the ALDA web site. http://www.alda.org/chapterdirectory.php
You could try contacting the region director, Jane Schlau, to see if she can refer you to people who have gone through the same sort of adventure that you are now.

If you think you might be bringing your adventure to the USA, Shhh is another organization you can tap for help and socializing.

These two organizations have a history of lobbying for their members' rights. Businesses that cater to the Deaf community have come to recognize them as people to listen to.

We have a saying here in the States, "if momma ain't happy, no one is happy". I know ALDA thinks of themselves as one big family.

jim stone · Post by **jim stone** » Tue Jun 24, 2008 7:44 pm

OK, I'm back from my wife's shopping expedition.
Please bear with me while I read this thread.
I'll probably chime in tomorrow morning but, in any
case, I will be back.

jim stone · Post by **jim stone** » Tue Jun 24, 2008 7:53 pm

OK, forgive me if I use the board as a notepad.
Here's a list of clinics and physicians in my area
(ST. Louis) that dispense the implant Berti uses.
I've myself seen Jacques herzog. Center
for Hearing and Balance Disorders.

Sorry this is a mess (stuff runs together) but the info is on the product
website. We appear to have many clinics
that do these implants, apparently using this
product, including several university medical
schools, including Washington University
and Saint Louis University. These tend to be great places.

Central Institute for the Deaf
Speech & Hearing Clinics
825 South Taylor
St. Louis, MO 63110
Phone: 314-977-0127
Fax: 314-977-0023
View Map to this Clinic
Lisa Davidson Ph.D. CCC-A
Maggie Matusofsky
Marie Richter
James Benecke, M.D.
3023 N Ballas Road
Bldg. D, Suite 675
St Louis, MO 63131
Phone: 314-995-9021
Fax: 314-995-9814
View Map to this Clinic
James Benecke, M.D.
Midwest Ear Institute
4200 Pennsylvania, #100
Kansas City, MO 64111
Phone: 816-932-1660
Fax: 816-932-1675
View Map to this Clinic
Charles M. Luetje, M.D.
Bradley Thedinger, M.D.
Robert Cullen, M.D.
Lisa Cowdrey, M.A.
Kristen Dawson, Au.D.
Missouri State University
901 S National Ave
Speech, Language and Hearing Clinic
Springfield, MO 65804
Phone: 417-836-5275
Fax: 417-836-7662
View Map to this Clinic
Jaime Lanois, Au.D.
St John's Clinic - ENT
1229 East Seminole, Suite 530
Cochlear Implant Program
Springfield, MO 65804
Phone: 417-820-5071
Fax: 417-820-3757
View Map to this Clinic
Scott A. Estrem, M.D.
Mamie Tally, M.S.
St. John's Mercy Medical Center
615 S. New Ballas Road
St. Louis, MO 63141
Phone: 314-251-4646
Fax: 314-251-6818
View Map to this Clinic
Randall Clary, M.D.
Tracy Mishler, Au.D.
Lauren Pfaender, Au.D.
St. Joseph Institute for the Deaf
1809 Clarkson Road
Audiology Dept.
Chesterfield, MO 63017
Phone: 636-532-3211
Fax: 636-532-4560
View Map to this Clinic
Beverly T. Fears M.S. CCC-A
Lora Noble
St. Louis Children's Hospital
1 Children's Place, 3S23
Cochlear Implant Program
St. Louis, MO 63110
Phone: 314-454-2201
Fax: 314-454-4097
View Map to this Clinic
Richard Chole, M.D.
J. Gail Neely, M.D.
Timothy Hullar, M.D.
Jamie Cadieux, Au.D.
Jerrica Kettle, Au.D.
St. Louis University
3660 Vista Avenue
Suite 312
St. Louis, MO 63110
Phone: 314-577-8884
Fax: 314-977-5119
Website: www.slucare.edu/ent
View Map to this Clinic
Anthony Mikulec, M.D.
Stanton Jones, M.D.
St. Louis University (Satellite Office)
621 South New Ballas Road
Suite 307 - A
St Louis, MO 63141
Phone: 314-251-6362
Fax: 314-251-4552
View Map to this Clinic
Amy Estill, M.A. CCC-A
The Center for Hearing & Balance Disorders
226 South Woods Mill Road
Suite 58
Chesterfield, MO 63017
Phone: 314-453-0001
Fax: 314-453-0489
View Map to this Clinic
Jacques Herzog, M.D.
Kathy Rehwinkel, M.S.
The Moog Center for Deaf Education
12300 South Forty Drive
Audilology Dept
St. Louis, MO 63141
Phone: 314-692-7172
Fax: 314-692-8544
View Map to this Clinic
Beth Holstad M.A. CCC-A
Roxanne J. Aaron, M.A. CCC-A
Valerie G. Sonneveldt, M.S.
University of Missouri Health Sciences Center
1101 Hospital Drive
ENT/Aud. Clinic
Univ. Physician's Medical Bldg.
Columbia, MO 65212
Phone: 573-882-7129
Fax: 573-884-3305
View Map to this Clinic
Troy D. Scheidt, M.D.
William Kinney, M.D.
Michelle Woodward, M.S.
Michelle Scheidt-Hopkins, M.S.
Jodi Wilske, Au.D.
Washington University
660 South Euclid Avenue, C.B. 8115
Cochlear Implant Program
St. Louis, MO 63110-1010
Phone: 314-362-7245
Fax: 314-362-7346
View Map to this Clinic
J. Gail Neely, M.D.
Richard Chole, M.D.
Timothy Hullar, M.D.
Laura Holden, M.A.
Margo Skinner, Ph.D.
Brenda Gotter, M.S.
Lisa Potts, M.S.
Sallie S. Vanderhoof, M.S.
Ruth Reeder, M.A.
Jill B. Firszt, Ph.D.