balance issues

[Guest guest]

In a message dated 9/20/2004 5:52:33 PM Alaskan Daylight Time,

lisak70@... writes:

> As long as I don't have a migraine or ear infection, I'm okay with balance.

> However, I think I'm going to raise this issue with my surgeon just in case.

>

>

This is a good idea! I'm glad you don't have those migraines any more..

that's a good thing to grow out of.

Since the eyes and the ears are both considered organs of balance (along with

the muscles and the joints) it's a good idea for you to draw this to the

attention of your surgeon.

Pam

[Guest guest]

Pam,

That's exactly what I will do. I have an appointment with my audi next week,

so perhaps I'll ask her to make a note of this to the surgeon as well before

my pre-op date. I think I'd feel much better discussing this. If there's

nothing to be concerned about, no worries!!

[Guest guest]

Hey everyone!

I haven't written for a long time; I am a (now) 36 yr old female with CMT 1A. I

have been feeling a bit down because I have been struggling to get my balance

back for some time and haven't been able to while stndin still (completely).

I was wondering if anyone with CMT in this group has Verizon Wireless (In fact,

thats my only phone!). I have it and anyone who has it can call anyone else in

the country free if they have it. Anyway, I would like to talk to some of you

who have CMT and may also be having trouble with balance. I think it would be

nice.

Anyway, I know this group is open to outsiders too so I will wait for a reply

from someone in here with CMT and we can exchange numbers off list. I would

really appreciate it!!!

Thanks,

Dawn Turmenne

[Guest guest]

Hi ,

I , too, lost all my hearing, followed by my balance a few months before my

implant. I was in very bad shape, walking around with a walker. By the

time of my surgery I had progressed to a cane. I was terrified that the

surgery would make my balance worse, but it did not. It was perhaps even ever

so

slightly better.

After my hook up , when I could hear again, I started vestibular therapy. I

still go for therapy more than 5 years later, and still am progressing.

After the first 15 months, I switched therapists to one who works with me on

balance from a sports point of view, and on weight training to build up my

muscles to help keep me stable. I do admit though that one of the primary

reason that I have not pursued going bilateral is my fear of setting off the

balance again. My surgeon does not share that concern in my case.

Steinerman in Long Island

[Guest guest]

> Hi, I've been reading so much about balance and this is a big

concern for me. I've been working so hard to get my balance back;

after losing it along with my hearing four months ago. My biggest

problem is still everything shifting when I move my head, and not

being able to quickly focus. Is it common to lose balance and

vestibular function with surgery, and can it get really, really bad?

>

> (San Diego)

Wicab (www.wicab.com) makes a device called BrainPort, which

supposedly can help with balance problems. I believe it's still in

clinical trials, but you might find one near you looking thru

their website. I don't know if you qualify, you have to have had

balance problems for a year. Even so, you might want to monitor them.

Jeff

[Guest guest]

Thanks for the info Jeff, I just checked out their website, its' a

strange concept - electrical sensory stimulation through the tongue,

something like that. They seem to have positive results in treating the

balance issues though, I'll keep my eye on it!!

(San Diego)

> Wicab (www.wicab.com) makes a device called BrainPort, which

> supposedly can help with balance problems. I believe it's still in

> clinical trials, but you might find one near you looking thru

> their website. I don't know if you qualify, you have to have had

> balance problems for a year. Even so, you might want to monitor them.

>

> Jeff

>

[Guest guest]

Thanks for the info Jeff, I just checked out their website, its' a

strange concept - electrical sensory stimulation through the tongue,

something like that. They seem to have positive results in treating the

balance issues though, I'll keep my eye on it!!

(San Diego)

> Wicab (www.wicab.com) makes a device called BrainPort, which

> supposedly can help with balance problems. I believe it's still in

> clinical trials, but you might find one near you looking thru

> their website. I don't know if you qualify, you have to have had

> balance problems for a year. Even so, you might want to monitor them.

>

> Jeff

>

[Guest guest]

Thanks , I guess I'll just have to hope for the best!! I'm just

curious what do they have you do in vestibular therapy. The only

thing I do now is mostly " eye exercises " at home. I also spend time

concentrating and practicing on my balance.

I grew up on Long Island in Massapequa!!

Now, let's see if I can post this without double posting!!

(San Diego)

>

> Hi ,

>

> I , too, lost all my hearing, followed by my balance a few

months before my

> implant. I was in very bad shape, walking around with a

walker. By the

> time of my surgery I had progressed to a cane. I was terrified

that the

> surgery would make my balance worse, but it did not. It was

perhaps even ever so

> slightly better.

>

> After my hook up , when I could hear again, I started vestibular

therapy. I

> still go for therapy more than 5 years later, and still am

progressing.

> After the first 15 months, I switched therapists to one who works

with me on

> balance from a sports point of view, and on weight training to

build up my

> muscles to help keep me stable. I do admit though that one of

the primary

> reason that I have not pursued going bilateral is my fear of

setting off the

> balance again. My surgeon does not share that concern in my

case.

>

> Steinerman in Long Island

>

>

>

>