Re: Surgery For Me Tomorrow

November 2, 2005

Alice my thoughts and prayers are with you....surely you have been through

more than enough! (hugs) All good thoughts...when you are back up to yourself

you have to tell me about Savannah I have long wanted to go there...Yours,

Vivian

November 2, 2005

Alice,

Good luck tomorrow with your CI surgery, and my prayers will be with you for a

quick and easy recovery. Will having the left side explanted in the future help

with the equilibrium and visual problems? I haven't signed back up for the CI

forums yet, since I've gotten back online, so haven't kept up to date over

there. So is this a possibility for us in the future, and I suppose it is, that

those of us with Mito, and more specifically, those of us who are deaf, may

eventually have our auditory nerves fail on us? That sort of puts a damper on

things, but hopefully, if it does happen to anyone in my family, it will be

after a good long life. At least my one sis and I have sign language to fall

back on... but then, well, I won't even think about the " what if's " right now.

At least, from what I can figure out (and I, of course, am no way a medical

professional)... it seems that our family's genetic error is in the cell

nucleus, so we can pretty much base our disease progression by past family

history. And, that prognosis looks pretty good, since my Grandfather lived into

his 80's and my mom is in her 70's and has had a fairly normal life, outside of

the deafness, neuropathy, and bipolar disorder (possibly some dissociative

integration disorder, but that is very possibly due to some childhood abuse, as

well). Anyway, getting off the subject, I know.

Will be thinking about you tomorrow, and hope this implant is very successful

for you.

Take care,

Cin

----- Original Message -----

From: Alice

Well - I've been quiet, I know. A lot has happened over the last

few months. One of which was a move to Savannah, GA. Among those

was the need to locate a new CI implant center capable of taking

care of my needs. I had my first appointment at MUSC in ton

the second week of October. My history had been explained via e

mail to them. A representative of the implant company was there

when I arrived. Their intent was to get the right side (newest) CI

working for me. Testing was performed and to my surprise (after

being told that my auditory nerve was dead in the past on that side)

we found that I got sound from one specific electrode. This

prompted additional testing and it was found that only 3 of my

electrodes were working. There are a total of 24 - two of which are

ground electrodes. When only 3 work, the implant is not

functional.

Tomorrow morning, I will have yet another CI surgery to replace the

implant on the right making a total of 4 now. As a reminder - the

left was implanted incorrectly in 1999 and I only get residual

hearing from it. This causes vibration of the semi circular canal

which is believed to be the reason I have such difficulty with

equilibrium and visual distortion.

I never dreamed that I would be going in to do this again. Surgery

is tough on me as it is on all of us but the other issues are

worse. I long to have some normalcy of balance and visual issues.

The loss of these are truly life altering.

Cindy is here so I'll leave it to her to update you after the

surgery. In the meantime, I'm still here for all of you with as

much as I can offer at this time.

Alice

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

November 2, 2005

Hi Cin,

I have missed your postings on the forums. This is really an

uncharted area so I can't really say whether or not the auditory

nerve loses it's use after time with the power from the CI. I do

know one other parent of a child with Mito who had to have the Med-

El CI removed when it became apparent that he had lost the use of

the device. The parents chose not to re-implant.

Right now - the re-implant is scheduled because the CI center is

saying that the implant has failed and not my auditory nerve which

was believed in the past. Integrity testing shows only 3 working

electrodes on that side (right) and as you know, that is not enough

to give anyone sound. On the left, the array is outside of the

cochlea - possibly thru a hole that was made during surgery. Until

someone goes in and really looks at this, we have no way of knowing

but this is what it appears to be. Because the array is laying very

close to my Carotid artery, this would be a pretty delicate

surgery. There are air pockets in the cochlea as well so it may

have found it's way thru one of those but it has not worked as it

should from the beginning and with the straight array - I have some

natural residual hearing (can hear the clicking when I dry that ear

with a towel) which tells us that the array has never been in the

cochlea. Needless to say, when the right was implanted and I could

hear so well - it was a special treat. Unfortunately - this lasted

3 months and although we mapped it a few times, it was believed that

it failed even though it passed integrity. That one was implanted

in March of 2003. In March of 2004 - the right side implant was

replaced but when I went for activation, we could not get useable

sound. Now it appears that 19 of the electrodes are wide open and

non functional. We tried to see if turning some of them on would

bring them to normal but this did not happen. Instead, about two

days later, I began to have severe facial stimulation. I had to

turn the processor (Sprint) down each day more and more until it was

down so low that it was a waste of batteries to have it on. This

was the determining factor in the re-implant. I'll be having the

Freedom done tomorrow and the CI Center is extremely hopeful that

this will work. I have to say that they don't have a clue as to how

much I'm hoping that it is successful. I don't look forward to the

possibility of going for another activation and getting nothing

after tryng so many times.

Thank you for the well wishes. BTW - the news about your family is

very interesting to me as I wondered from the start after knowing

for so long whether you were another mito family and even

suggested it to her. I understand that she's not reading right now

and that it's another sister who was tested.

Alice

November 2, 2005

Hi Alice,

I am sorry to hear you have to go through this please know that you will be in

my thoughts and prayers. I have missed you.

Hugs,

Donna K---- Alice justagram@...> wrote:

> Well - I've been quiet, I know. A lot has happened over the last

> few months. One of which was a move to Savannah, GA. Among those

> was the need to locate a new CI implant center capable of taking

> care of my needs. I had my first appointment at MUSC in ton

> the second week of October. My history had been explained via e

> mail to them. A representative of the implant company was there

> when I arrived. Their intent was to get the right side (newest) CI

> working for me. Testing was performed and to my surprise (after

> being told that my auditory nerve was dead in the past on that side)

> we found that I got sound from one specific electrode. This

> prompted additional testing and it was found that only 3 of my

> electrodes were working. There are a total of 24 - two of which are

> ground electrodes. When only 3 work, the implant is not

> functional.

>

> Tomorrow morning, I will have yet another CI surgery to replace the

> implant on the right making a total of 4 now. As a reminder - the

> left was implanted incorrectly in 1999 and I only get residual

> hearing from it. This causes vibration of the semi circular canal

> which is believed to be the reason I have such difficulty with

> equilibrium and visual distortion.

>

> I never dreamed that I would be going in to do this again. Surgery

> is tough on me as it is on all of us but the other issues are

> worse. I long to have some normalcy of balance and visual issues.

> The loss of these are truly life altering.

>

> Cindy is here so I'll leave it to her to update you after the

> surgery. In the meantime, I'm still here for all of you with as

> much as I can offer at this time.

>

> Alice

>

> Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

November 2, 2005

Alice,

You will be in my thoughts and prayers tomorrow. I am sure that

the waiting and anticipating is hard. Thinking of you.

Smiles and hugs,

a

On Wed, 02 Nov 2005 13:06:48 -0000 " Alice " justagram@...>

writes:

Well - I've been quiet, I know. A lot has happened over the last

few months. One of which was a move to Savannah, GA. Among those

was the need to locate a new CI implant center capable of taking

care of my needs. I had my first appointment at MUSC in ton

the second week of October. My history had been explained via e

mail to them. A representative of the implant company was there

when I arrived. Their intent was to get the right side (newest) CI

working for me. Testing was performed and to my surprise (after

being told that my auditory nerve was dead in the past on that side)

we found that I got sound from one specific electrode. This

prompted additional testing and it was found that only 3 of my

electrodes were working. There are a total of 24 - two of which are

ground electrodes. When only 3 work, the implant is not

functional.

Tomorrow morning, I will have yet another CI surgery to replace the

implant on the right making a total of 4 now. As a reminder - the

left was implanted incorrectly in 1999 and I only get residual

hearing from it. This causes vibration of the semi circular canal

which is believed to be the reason I have such difficulty with

equilibrium and visual distortion.

I never dreamed that I would be going in to do this again. Surgery

is tough on me as it is on all of us but the other issues are

worse. I long to have some normalcy of balance and visual issues.

The loss of these are truly life altering.

Cindy is here so I'll leave it to her to update you after the

surgery. In the meantime, I'm still here for all of you with as

much as I can offer at this time.

Alice

November 2, 2005

--- Bless your heart Alice! I am sorry to hear that you are going

through such a difficult time. You will be in my thoughts and

prayers for a successful surgury with a quick recovery.

Dawn anich

In , " Alice " wrote:

>

> Well - I've been quiet, I know. A lot has happened over the last

> few months. One of which was a move to Savannah, GA. Among those

> was the need to locate a new CI implant center capable of taking

> care of my needs. I had my first appointment at MUSC in ton

> the second week of October. My history had been explained via e

> mail to them. A representative of the implant company was there

> when I arrived. Their intent was to get the right side (newest)

CI

> working for me. Testing was performed and to my surprise (after

> being told that my auditory nerve was dead in the past on that

side)

> we found that I got sound from one specific electrode. This

> prompted additional testing and it was found that only 3 of my

> electrodes were working. There are a total of 24 - two of which

are

> ground electrodes. When only 3 work, the implant is not

> functional.

>

> Tomorrow morning, I will have yet another CI surgery to replace

the

> implant on the right making a total of 4 now. As a reminder - the

> left was implanted incorrectly in 1999 and I only get residual

> hearing from it. This causes vibration of the semi circular canal

> which is believed to be the reason I have such difficulty with

> equilibrium and visual distortion.

>

> I never dreamed that I would be going in to do this again.

Surgery

> is tough on me as it is on all of us but the other issues are

> worse. I long to have some normalcy of balance and visual

issues.

> The loss of these are truly life altering.

>

> Cindy is here so I'll leave it to her to update you after the

> surgery. In the meantime, I'm still here for all of you with as

> much as I can offer at this time.

>

> Alice

>

November 2, 2005

Hi Alice,

I understand about the device failure, and it sounds like yours is from the

device then, not your auditory nerve? I was concerned about our auditory nerves

going caput, and becoming non-functional due to the mito itself, and not ever

being able to hear sounds again.... but then there's the auditory brainstem

implants, which I know are a much more delacate surgery, too. If your cochlea

is ossified (sounds probable), then it would definitely be easy for the

electrodes to go thru one of the holes that the ossification caused... or, it

could be very sloppy surgery, and they didn't get it inserted correctly in the

first place. I wasn't aware that you'd been implanted so many times, but knew

you'd had the two, and had a lot of trouble with them. Ruth also had spoken to

Jul from the beginning about mito, and, like I said, I really dismissed it as a

possibility that our family had the mito, due to it " only being passed on from

the female " , and my mom got her deafness, etc. from her dad.... then I did

research, after they told us in Ann Arbor that it CAN be passed on from the Male

to the children, as well, and well, hey, it does really happen that way

sometimes! And, remember when my great-nephew (Jul's grandson) had the

malignant hyperthermia? And I know you have grandkids I think, that had that,

as well, or maybe other relatives, and that is one of the symptoms associated

with Mito, as you well know. It really is interesting to find that all these

things do fit so well into the Mito profile. Well, we now at least have a

direction in which to go, even if there isn't a cure, at least we hopefully will

have some answers soon.

Yes, it's Deb who is going through all the testing, and being our Guineau Pig

. She was pretty sore after the muscle biopsy, but she fared the best of the

three of us after the cochlear implant surgery.

Anyway, I hope that this time it does go well for you, and I understand fully,

about you not getting your hopes up, only to be dashed once again. I'd really

not want to have to go thru the surgery again, and find out that it could fail

time after time, too. But, Ruth did have to have the second implant, as did

Doris due to ossification, so, they can be successful, as we know . I'd love

to get the Freedom implant, too, but certainly not under the conditions you are

facing. Hang in there, hon, and let us know how it goes, just as soon as you're

able.