Re: For Alice: Your Eyes - Malissa

[Guest guest]

---

My heart goes out to you with all of the issues you are dealing with

now. You are such a positive impact to this group.

dawn a

In , " A ADAMS " wrote:

> I'm taking Neurontin right now. It seems that the N-O and the CI

Surgeon aren't in agreement with much these days but they both agree

I need to be on Neurontin although for different reasons. The N-O

feels I need to be on it for the vestibular issues and the CI

Surgeon wants me to be on it to potentially reduce the facial

stimulation I have with the right implant (the new side that is not

working) so that we can find a mapping that will work for me and

allow me sound on the right. The N-O feels that the implant on the

left - because of the multiple electrodes that are outside of the

cochlea wall - needs to be removed because it is the cause of the

severity of my problems by stimulating the semi circular canal. The

CI Surgeon says Absolutely Not - it has nothing to do with it. In

the meantime - things aren't really changing with respect to this

problem even though I've been taking the Neurontin for 2 months

now. I now look forward to days that I don't need to hear anything

and just don't wear the processor so I have no sound at all except

continual roaring tinnitus. I'm doing this to see if the lack of

stimulation will make the vestibular problems subside but have a

feeling I might need to do this for a prolonged period of time

before I'll notice a change. I'm too nosy I guess - need to be able

to understand something that is going on around me - regardless of

how much I struggle to get that.

>

> I saw the CI Surgeon a couple of weeks ago. His first desire is

to get the right side working and of course, that would be wonderful

but a major miracle as far as I'm concerned. If we can stop the

facial contortions from it, we might be able to get some usable

sound but the jury is still out on that. We really don't know if

stopping the stimulation will make any difference. It's been 6

months since the last surgery now and I'm no closer to getting sound

from that implant. Alternate plan B is to go in on the left and

remove the implant there but replace it with the newest upgrade

which has a soft tip curved array. The feeling is that this array

would curl right into the cochlea wall as the first one should have

done had there not been a hole created. The surgeon feels that the

new improved soft tip curved array will not find the hole but he

wants to get more experience doing it before we go that route. I

want to think it over carefully as there's a fear inside that I

cannot avoid. What if we take out the older one and put in the new

one and it fails to do what he hopes? What if the surgical

procedure takes away what I have now? Am I well enough to go thru a

3rd surgery within 2 years? Each one has set me back a little

further. Even using the Mito precautions, I'm not handling surgery

too well now and this replacement surgery could be very lengthy

since the implant that is coming out has been there since 1999.

There's lots to think about.

>

> As far as vestibular exercises (sensory motor rehab), I went

through the course of them in RI - before we knew that the

electrodes were out of the cochlea - and they didn't help at all.

At this time, I was just experiencing dizziness but now the

combination of dizziness and osillopcia is overwhelming. If there

is a wide view in front of me, I have no balance at all. You would

think I've been on a binge.

>

> Alice

> Re: Re: For Alice: Your Eyes - Malissa

> >

> >

> > In a message dated 9/2/2004 8:45:09 PM Eastern Standard Time,

> > justagram14@m... writes:

> >

> > My situation has worsened over the last year. In fact it's

> > considerably worse and I went from dizzy to this. I was able

to

> > drive a little bit a year ago. Now I cannot drive at all and

I

> > can't even tolerate being in moving vehicle too well.

> >

> >

> > Oh Alice,

> > My heart goes out to you. I remember all too well how that was

for me. I

> > couldn't drive for several weeks after it first happened to

me. It is

> > something

> > that is so hard to describe, yet so disabling. I would find

the easiest things

> > so frustrating to do b/c my eyes weren't communicating with my

brain

> > correctly. My doctors kept telling me I had vertigo, but that

wasn't at all

> > what I

> > was experiencing. I have had vertigo too and they are very

different. Would

> > vestibular rehab help you? There are specialized PT's that

help with

> > rehabilitatiing the vestibular system. Do they think there is

a connection

> > between the

> > vestibular issues and mito?

> >

> > Thanks for passing along the phone # to report it. I will

follow through

> > with that. I am already enrolled in one vestibular study with

NIH. I think

> > it's

> > the one you are probably talking about....

> >

> > You're an amazing person and I know you have faced many

obstacles in your

> > life. I am sure you will conquer this one as well. We'll all

be here to

> > support

> > you.

> > Hugs, Malisa

> >

> >

> >

>

>

>