RE: Disability and CIs/Mike

[Guest guest]

Mike <r.ralphashley@...> wrote:

> Pam, did you have AN's in both ears?   I did.  NF2

> is what caused mine.  They were able to save what

> little hearing I had left in both ears and there has

> been no regrowth of the AN's since 95 and 96.

> Anyone else here have NF2 (Neurofibromatosis    

> Type 2)?

> Mike

Hi Mike;

No I had an AN in just one ear and don't think I have NF2. They removed the

AN from my right ear and thought they had saved the hearing too but as it

turned out I have no hearing left in that ear and do not benefit from a hearing

aid at all on that side. 6 weeks after AN removal I sustained a contralateral

hearing loss to the left side for no reason (sympathy>?) and that left me

profoundly HOH on the left side. My hearing aid (new Impact and an older

resound

which I still prefer) allows me to hear environmental sounds and also helps me

speechread if the conditions are right and the speaker is cooperative.

I am considering a CI for the AN ear because the surgeon told me the nerve

was left in tact. However the CI team would prefer to use my *good* (non AN)

left ear for the CI and I was hoping to have some bilateral hearing with a CI in

the right side.. plus my head is already numb on the right and I have already

lost the balance nerve on that side so all they would really have to worry

about in terms of nerves is the facial one.. I'm not as enthuiastic about

having the implant on the left side.. one mis step and I would have no balance

nerves left and I fear that would put me to bed for the rest of my life. No one

seems to know what happens when a person loses both balance nerves??? anyone?

Pam

[Guest guest]

So you are saying that I could lose the balance nerve on both inner ears and

still stay upright on my feet without nausea and vertigo?

Thanks! That's the first definite answer I've ever gotten.. :-)

Pam

In a message dated 4/26/2004 11:02:24 PM Alaskan Daylight Time,

bingrao@... writes:

> Pam,

>

> I used to work with a lot of balance patients. When there is a

> significant difference in peripheral balance function (from the inner

> ear or nerve), the brain can learn to adapt to it. This occurs

> primarily by learning to ignore the stimuli from the inner ears and

> instead depend on the other two components of balance, the ocular motor

> reflex (eye movements) and proprioception (monitoring weight

> distribution in the feet if you're standing or legs/trunk if you're

> sitting/lying).

>

> After a significant loss of balance function on one side, the degree of

> loss should be localized and quantified using ENG, Rotary Chair and

> Posturography. Then a specialized regimen of physical therapy can

> assist you in re-training your brain to deal with the asymmetric

> stimulus pattern.

>

> For more information about all of this see

> http://www.dizzy.com/PatientLibrary.aspx

>

>

> ____________________________________________

> Best Regards,

>

> Brad Ingrao, M.S.Ed. CCC-A, FAAA

> Editor

> EDEN - The Electronic Deaf Education Network

> www.bradingrao.com

> e-mail: info@...

>

>

>

[Guest guest]

Pam,

I used to work with a lot of balance patients. When there is a

significant difference in peripheral balance function (from the inner

ear or nerve), the brain can learn to adapt to it. This occurs

primarily by learning to ignore the stimuli from the inner ears and

instead depend on the other two components of balance, the ocular motor

reflex (eye movements) and proprioception (monitoring weight

distribution in the feet if you're standing or legs/trunk if you're

sitting/lying).

After a significant loss of balance function on one side, the degree of

loss should be localized and quantified using ENG, Rotary Chair and

Posturography. Then a specialized regimen of physical therapy can

assist you in re-training your brain to deal with the asymmetric

stimulus pattern.

For more information about all of this see

http://www.dizzy.com/PatientLibrary.aspx

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: Disability and CIs/Mike

Mike <r.ralphashley@...> wrote:

> Pam, did you have AN's in both ears? I did. NF2

> is what caused mine. They were able to save what little hearing I had

> left in both ears and there has been no regrowth of the AN's since 95

> and 96.

> Anyone else here have NF2 (Neurofibromatosis

> Type 2)?

> Mike

Hi Mike;

No I had an AN in just one ear and don't think I have NF2. They removed

the AN from my right ear and thought they had saved the hearing too but

as it turned out I have no hearing left in that ear and do not benefit

from a hearing aid at all on that side. 6 weeks after AN removal I

sustained a contralateral hearing loss to the left side for no reason

(sympathy>?) and that left me profoundly HOH on the left side. My

hearing aid (new Impact and an older resound which I still prefer)

allows me to hear environmental sounds and also helps me speechread if

the conditions are right and the speaker is cooperative.

I am considering a CI for the AN ear because the surgeon told me the

nerve was left in tact. However the CI team would prefer to use my

*good* (non AN) left ear for the CI and I was hoping to have some

bilateral hearing with a CI in the right side.. plus my head is already

numb on the right and I have already lost the balance nerve on that side

so all they would really have to worry about in terms of nerves is the

facial one.. I'm not as enthuiastic about having the implant on the

left side.. one mis step and I would have no balance nerves left and I

fear that would put me to bed for the rest of my life. No one seems to

know what happens when a person loses both balance nerves??? anyone?

Pam

[Guest guest]

Pam,

It certainly won't happen easily or over night, but yes, it is possible.

You will have difficulty in the dark and will require some mobility

training for night time movement, but staying in bed 24/7 should not be

necessary.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: Disability and CIs/Mike

So you are saying that I could lose the balance nerve on both inner ears

and still stay upright on my feet without nausea and vertigo?

Thanks! That's the first definite answer I've ever gotten.. :-)

Pam

In a message dated 4/26/2004 11:02:24 PM Alaskan Daylight Time,

bingrao@... writes:

> Pam,

>

> I used to work with a lot of balance patients. When there is a

> significant difference in peripheral balance function (from the inner

> ear or nerve), the brain can learn to adapt to it. This occurs

> primarily by learning to ignore the stimuli from the inner ears and

> instead depend on the other two components of balance, the ocular

> motor reflex (eye movements) and proprioception (monitoring weight

> distribution in the feet if you're standing or legs/trunk if you're

> sitting/lying).

>

> After a significant loss of balance function on one side, the degree

> of loss should be localized and quantified using ENG, Rotary Chair and

> Posturography. Then a specialized regimen of physical therapy can

> assist you in re-training your brain to deal with the asymmetric

> stimulus pattern.

>

> For more information about all of this see

> http://www.dizzy.com/PatientLibrary.aspx

>

>

> ____________________________________________

> Best Regards,

>

> Brad Ingrao, M.S.Ed. CCC-A, FAAA

> Editor

> EDEN - The Electronic Deaf Education Network www.bradingrao.com

> e-mail: info@...

>

>

>

[Guest guest]

Pam,

I lost both my balance organs as well as my hearing nearly three years ago,

over the course of a few weeks.

The CI has 'fixed' the hearing to some extent, but I found the balance

problems the worst to handle. As Brad said the brain slowly retrains the

body to compensate, but reading his input, I think he was referring to

unilateral losses.

If both balance nerves or organs die off, not only is balance difficult at

first, but there is another condition called Oscillopsia that comes with it.

This is the smearing of your visual field as your head moves. As you move

your head the visual field lags behind for a split second. Walking and

riding in the car produces a bouncing of your vision, not unlike watching a

movie that some one has recorded when walking along.

At first the bouncing in particular is very bothersome and disturbing, it

does not get better, your brain simply starts to cancel it out when walking,

riding in the car, at least for me is most unpleasant--even now and I do not

feel confident enough to drive far.

Balance as Brad said involves the input from vestibular organs, eyes and

pre-priconception-- the feed back principally from muscle receptors in the

legs, neck and spine.

One spends a great deal of time in thinking about movement, this lessens

with time, but is ever present. I for example now move about quite well, not

so fast as before and will always touch something as I go, just to

re-enforce my position, but I do wobble along rather.

I am 45, a builder and am very obstinate, I just keep pushing on. I am not

able to achieve so much these days, but I will not give in. The biggest

problem now is the dark, If I can't see, I can't balance, I just do not know

up from down. There are also difficulties in short term memory, it's all

taken up with concentrating.

There is more to this problem like tiredness, people moving about, and other

visual stimuli that give problems, but it is not the end of the world by any

means for most of us 'wobblers'.

There is a web site for people who have lost their balance organs,

principally through gentamicin if you want to explore this more.

Wobblers.com

Regards

Re: Disability and CIs/Mike

I'm not as enthuiastic about

having the implant on the left side.. one mis step and I would have no

balance

nerves left and I fear that would put me to bed for the rest of my life. No

one

seems to know what happens when a person loses both balance nerves???

anyone?

Pam