Update

[Guest guest]

Some of you know that I've had some interesting months with some

noticeable changes. It's time that I updated the group so that

everyone knows what is going on with me. There is a lot to share

but not all the answers are in.

Last week, I went to Cleveland to see Dr Cohen. It had been 3 years

and he did see an obvious decline which he didn't attribute to age.

I don't have the test results back yet but he suspects a few things

which I will hold in reserve until I have his report. The visit was

a very quick one but a long trip from Albuquerque.

There were two reasons to head to the Lakes region. As you all

know, I have two cochlear implants. The one on the left has been a

problem for at least 3 1/2 years and the one on the right was done

last March and began failing in June. Naturally, the assumption was

that my disease was the cause of my CI problems. In fact, it was so

easy to assume that that the doctors really didn't try to look

further. In Novemeber, the right was so bad that I had to start

wearing the left side BTE again. I quickly began to have some very

serious equilibrium problems and really became quite ill. I was

sure that this coincided with the use of both implants. The doctors

were not really sure what was going on.. had various thoughts which

I won't go into here. I had a CT Scan done in a relatively new lab

because the other labs here were booked so heavily it would have

taken until mid January to get in. This was a blessing in disguise

as the new lab - new tech - wrote that there was only one thing that

he could see and that was that the electrodes were outside of the

cochlea on the left.

Back to the doctors I went. We were relieved that there weren't any

signs of infection which was what we were looking for but no one had

ever said that the electrodes were not coiled within the cochlea on

the left (except me). The CI surgeon seemed somewhat casual when we

went to see him but when I became a little strong about the

information on the left - he took a second look and then ordered the

CT Scans taken last year before the right was done to be brought to

his office by courier. We waited...they came.... he looked..and he

looked again....and then harder. He saw it but he didn't believe it

so he ordered new scans. I had them done and immediately, he sat

with me to express his apology for not seeing it last year but that

the scans were the same.. and the electrode array on the left is

outside of the cochlea...in the back. There is a hole in the

cochlea. How it got there..no one knows.. but it is more likely

than not a surgical error which happened when I had the implant

done.

Part of my trip to the Lakes area was also to go to U of Michigan

where I saw a doctor who gave a second opinion on the possibility of

repair of the left. This is not something that is ever seen and both

doctors have stated that there is no way to repair it. There are a

couple of excellent doctors who would like to see my scans and think

this can be fixed but we're going to take this one step at a time.

OK..now we know it's not Mito that caused my loss of hearing on the

left. We also know that the implant on the right has failed. The

left can't easily be fixed if at all. The right can be replaced and

if luck is with me, my system hasn't caused the problem on the left

and the replacement will fix the problem. It does not pass testing

very well but until it is removed and replaced and the new one is

activated.. we won't really know.

I'm scheduled for re-implant of the right on 3/24 and the implant

will be activated on 4/12. That's the day after Easter and the

beginning of Spring. I'm ready for new beginnings. Only if the

right replacement doesn't work will I venture any further with the

left. We will very likely put my old friend on the left to sleep by

shutting it completely down as the array is 2cm from the cartoid

artery.

Alice