A Short Update

[Guest guest]

This has been a long week for me. I went into Monday with great hopes that I

would be hearing on the right as well as I heard a year ago. If you read my

hook up information, you know by now that this did not happen.

It now is beginning to look as if we are definitely dealing with a medical

issue. There is some speculation that I have a rare and very severe type of

otosclerosis in my cochleas that has pushed the electrode array out on the left

and has made the right implant non-functional. I am blessed with some sound on

the left from the electrodes that are still active. On the right, so far, my

t's are so high that there is no place to set the c's. I have very intense

facial stimulation when the right is on. I've not totally given up hope for the

right and will attempt a new (and hopefully successful) mapping on April 27th.

but I need to be realistic.

When I first found out that the electrode array was outside of the cochlea on

the left, I jumped to concusions that I no longer believe. The hole was not

made in the cochlea for the electrodes to find. It happened on it's own. It's

not something that happens under normal circumstances but I have a disease that

does many strange things so we never know what to expect. We do know that it

affects the bones in our family.

Many people have known me for a long time and they also know that I am a strong

supporter of the CI. I am still a strong supporter and this will continue

because I have experienced a great miracle in my life. When I first had the

implant done in 99, we knew that there was a chance that it would never work for

me. I went into it feeling that if it gave me one year of hearing, I would be

pleased and grateful. Well.. it's given me 4 1/2 years of hearing and it is

still giving me hearing so I have nothing to complain about.

This week, I received some wonderful messages both on the list and off. I want

to take the time to thank you all for your wonderful support. I know I will

have moments of sadness but I also know I have given it my best.

The technology is wonderful. So many lives have and will be changed because of

it. We are truly blessed.

Alice

[Guest guest]

> This has been a long week for me. I went into Monday with great

hopes that I would be hearing on the right as well as I heard a year

ago. If you read my hook up information, you know by now that this

did not happen.

>

> It now is beginning to look as if we are definitely dealing with a

medical issue. I've not totally given up hope for the right and will

attempt a new (and hopefully successful) mapping on April 27th. but I

need to be realistic.

>

>> Alice

>

>

>

>

My thoughts and prayers go out to you Alice,and the audi doing

this work I marked the 27th on my calender. Let's keep positive and

keep trying, you are such an inspiration, so glad I met you :-)

[Guest guest]

Alice wrote,

I know I will have moments of sadness but I also know I have given it my best.

The technology is wonderful. So many lives have and will be changed because of

it. We are truly blessed.

Alice- I just want to say that I am sorry to hear of your troubles and I still

hope and pray for some good news in your situation. But I also want to tell you

thank you for all your advice and support you give us all on and off this

listserve. You have always been there to give your opinions and are careful to

state that this is your opinion not the only way. Again thanks and I truly hope

and pray things work out for you.

Mom of 4

Marcus 13

12

Jon 10

Annika 2

profoundly deaf

bilaterally implanted 3/1/04

hookup 3/25/04

[Guest guest]

Alice,

I just want to tell you that you are one woman that I truly admire. I hate

that you are going through this. I can't even imagine how awful it must be

and yet you are brave, honest and open about your feelings. I continue to

keep you in my prayers daily and always look forward to reading your

selfless posts, full of love, concern, committment and advice.

I wish you the very, very best.

Kim (Jaxon and Brixon's mom0

A Short Update

This has been a long week for me. I went into Monday with great hopes that

I would be hearing on the right as well as I heard a year ago. If you read

my hook up information, you know by now that this did not happen.

It now is beginning to look as if we are definitely dealing with a medical

issue. There is some speculation that I have a rare and very severe type

of otosclerosis in my cochleas that has pushed the electrode array out on

the left and has made the right implant non-functional. I am blessed with

some sound on the left from the electrodes that are still active. On the

right, so far, my t's are so high that there is no place to set the c's. I

have very intense facial stimulation when the right is on. I've not totally

given up hope for the right and will attempt a new (and hopefully

successful) mapping on April 27th. but I need to be realistic.

When I first found out that the electrode array was outside of the cochlea

on the left, I jumped to concusions that I no longer believe. The hole was

not made in the cochlea for the electrodes to find. It happened on it's

own. It's not something that happens under normal circumstances but I have

a disease that does many strange things so we never know what to expect. We

do know that it affects the bones in our family.

Many people have known me for a long time and they also know that I am a

strong supporter of the CI. I am still a strong supporter and this will

continue because I have experienced a great miracle in my life. When I

first had the implant done in 99, we knew that there was a chance that it

would never work for me. I went into it feeling that if it gave me one year

of hearing, I would be pleased and grateful. Well.. it's given me 4 1/2

years of hearing and it is still giving me hearing so I have nothing to

complain about.

This week, I received some wonderful messages both on the list and off. I

want to take the time to thank you all for your wonderful support. I know I

will have moments of sadness but I also know I have given it my best.

The technology is wonderful. So many lives have and will be changed because

of it. We are truly blessed.

Alice

[Guest guest]

That's great Heidi! I am glad that you are seeing some improvements. Those are the things that kept me moving forward even when I was so sick of it all.

Buist, ND HC

A short update

Yesterday I attended a 'baby shower' which was held outside during temperatures of 35c -40c.I got uncomfortable but managed to stay for slightly longer than two hours.As I have MS this would normally affect me for days. I did need to 'crash' for a couple of hours when I got home (and it took me that long to cool down) , and I was a little dizzy prior to bed time BUT I seem to be my usual self today.I still have the dry crepey skin, brittle nails and fragile hair. A bone density test says I am developing Osteopenia. But this speed of recovery was unthinkable two months ago.

[Guest guest]

Where did I get Heidi? Sorry! . Geee....

Buist, ND HC

A short update

Yesterday I attended a 'baby shower' which was held outside during temperatures of 35c -40c.I got uncomfortable but managed to stay for slightly longer than two hours.As I have MS this would normally affect me for days. I did need to 'crash' for a couple of hours when I got home (and it took me that long to cool down) , and I was a little dizzy prior to bed time BUT I seem to be my usual self today.I still have the dry crepey skin, brittle nails and fragile hair. A bone density test says I am developing Osteopenia. But this speed of recovery was unthinkable two months ago.

[Guest guest]

It's Ok - even my Mum gets my name wrong sometimes!

A short update

Yesterday I attended a 'baby shower' which was held outside during temperatures of 35c -40c.I got uncomfortable but managed to stay for slightly longer than two hours.As I have MS this would normally affect me for days. I did need to 'crash' for a couple of hours when I got home (and it took me that long to cool down) , and I was a little dizzy prior to bed time BUT I seem to be my usual self today.I still have the dry crepey skin, brittle nails and fragile hair. A bone density test says I am developing Osteopenia. But this speed of recovery was unthinkable two months ago.