Re: Re: For Alice: Your Eyes - Malissa

[Guest guest]

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

justagram14@... 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

[Guest guest]

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

justagram14@... 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

[Guest guest]

Malisa

My son, with mito, had vestibular issues when young. He went through a

sensory motor rehab. program that really helped. He would also have complex

partial seizures which he described as the room tipping. Anticonvulsants did

the trick for that.

laurie

> From: Malilibear@...

> Reply-To:

> Date: Fri, 3 Sep 2004 01:41:41 EDT

> To:

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

>

>

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

> justagram14@... 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

>

>

>

>

[Guest guest]

Malisa

My son, with mito, had vestibular issues when young. He went through a

sensory motor rehab. program that really helped. He would also have complex

partial seizures which he described as the room tipping. Anticonvulsants did

the trick for that.

laurie

> From: Malilibear@...

> Reply-To:

> Date: Fri, 3 Sep 2004 01:41:41 EDT

> To:

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

>

>

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

> justagram14@... 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

>

>

>

>

[Guest guest]

Malisa

My son, with mito, had vestibular issues when young. He went through a

sensory motor rehab. program that really helped. He would also have complex

partial seizures which he described as the room tipping. Anticonvulsants did

the trick for that.

laurie

> From: Malilibear@...

> Reply-To:

> Date: Fri, 3 Sep 2004 01:41:41 EDT

> To:

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

>

>

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

> justagram14@... 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

>

>

>

>

[Guest guest]

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@...justagram14@...> 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

>

>

>