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Hi Dawn- With Pete 99% of his hearing in his left ear was lost with the first

" flare " ..his right ear has lost at least 50% of hearing ...some days being

better than others. He has biggest problem with low tones and big big problem

because of distortion. He got a hearing aid( a digital one that was very

expensive)..he never wears it because he says it only magnifys the

distortion. He has learned to read lips but of course there are alot of

miscues involved in that. If someone screams in a high pitch it is painful

for him..you know like when children are playing and they get excited and

start screeching...he can hear that. Pete has profound damage to his

Vestibular System from his first episode with RP which also has severely

affected his balance..he has no balance response to his brain so when he is

standing he feels like he is tipped over..he has learned to compensate for

this with a cane or holding someones arm. Love and prayers to all Janet

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In a message dated 5/24/01 9:09:52 PM Pacific Daylight Time,

magic.cottage@... writes:

<< They look in my ear and say it's fine, but I still can't hear. Any

suggestions? >>

Elaine, this same thing happens to me. Drs. tell me the same thing. Even

when they did the hearing test and it showed minimal hearing loss.

hugs

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Janet,

I have a question for you. How did Pete convince his docs that his hearing lose

was RP related? I have hearing that comes and goes and the docs don't do a

thing. Ever time I have a change in air pressure my ear plugs up and living on a

mountain really plays havic with this. The docs just look at me like I'm from

Mars when I say that I can't hear. They look in my ear and say it's fine, but I

still can't hear. Any suggestions?

Elaine

Pete/hearing

Hi Dawn- With Pete 99% of his hearing in his left ear was lost with the first

" flare " ..his right ear has lost at least 50% of hearing ...some days being

better than others. He has biggest problem with low tones and big big problem

because of distortion. He got a hearing aid( a digital one that was very

expensive)..he never wears it because he says it only magnifys the

distortion. He has learned to read lips but of course there are alot of

miscues involved in that. If someone screams in a high pitch it is painful

for him..you know like when children are playing and they get excited and

start screeching...he can hear that. Pete has profound damage to his

Vestibular System from his first episode with RP which also has severely

affected his balance..he has no balance response to his brain so when he is

standing he feels like he is tipped over..he has learned to compensate for

this with a cane or holding someones arm. Love and prayers to all Janet

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In a message dated 05/25/2001 12:10:08 AM Eastern Daylight Time,

magic.cottage@... writes:

> Janet,

> I have a question for you. How did Pete convince his docs that his hearing

> lose was RP related? I have hearing that comes and goes and the docs don't

> do a thing. Ever time I have a change in air pressure my ear plugs up and

> living on a mountain really plays havic with this. The docs just look at me

> like I'm from Mars when I say that I can't hear. They look in my ear and

> say it's fine, but I still can't hear. Any suggestions?

>

Dear Elaine- We didn't convince them...they told us...the hearing and

Vestibular System are loaded with cartiledge...when there is a change in

barometric pressure Pete's hearing and eye sight become worse. Pete's doc

adjusts his prednisone according to the rise and fall of the barometer!!!!

Pete went to a Otoneurologist at Columcia Presbyterian Hospital in NYC who

does brain stem surgery and they did extensive testing and the results of

that testing got Pete Social Security Disability benefits in 2 weeks after we

had been trying for 6 months! Do you get " The Support Report " that R is

Editor of??(sorry about the poor grammar)..in it there are excellant articles

about RP and the eyes and ears. When the barometer changes Pete gets flares

and like any other flare it must be treated immediately to avoid permanent

damage( my opinion) If they had known Pete had RP when he had his first flare

he wouldn't have so much damage to his Vestibular System. If you would like

I'll look up the tests they did on Pete at Columbia and maybe your ENT will

do them. Personally I think you are better off going to a certifed

otoneurologist that hopefully has experience with RP or is at least willing

to learn. Let me know if I can help you in any other way. Love Janet

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>

> > Janet,

I have the same problem. I have a terrible time with balance. If I tilt my

head to the right I lose my balance. A few times it has been so bad I have

fallen. A few years ago we visited my Brother-in-law

in New Jersey. They live up in the mountains. When we got there my balance

was so bad I could not walk for 2 days. This was before I was dx. with RP.

Same thing when I got home, 2 days before I could walk without reeling

around the house.

My Docs kept telling me they could not see anything wrong with my inner

ears. Very frustrating.

Hugs,

Sandy

> >

>

> Dear Elaine- We didn't convince them...they told us...the hearing and

> Vestibular System are loaded with cartiledge...when there is a change in

> barometric pressure Pete's hearing and eye sight become worse. Pete's doc

> adjusts his prednisone according to the rise and fall of the barometer!!!!

> Pete went to a Otoneurologist at Columcia Presbyterian Hospital in NYC who

> does brain stem surgery and they did extensive testing and the results of

> that testing got Pete Social Security Disability benefits in 2 weeks after

we

> had been trying for 6 months! Do you get " The Support Report " that R

is

> Editor of??(sorry about the poor grammar)..in it there are excellant

articles

> about RP and the eyes and ears. When the barometer changes Pete gets

flares

> and like any other flare it must be treated immediately to avoid permanent

> damage( my opinion) If they had known Pete had RP when he had his first

flare

> he wouldn't have so much damage to his Vestibular System. If you would

like

> I'll look up the tests they did on Pete at Columbia and maybe your ENT

will

> do them. Personally I think you are better off going to a certifed

> otoneurologist that hopefully has experience with RP or is at least

willing

> to learn. Let me know if I can help you in any other way. Love Janet

>

>

>

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In a message dated 5/25/01 8:41:16 PM Pacific Daylight Time,

magic.cottage@... writes:

<< Like we enjoy this crap! Opps, guess I better not go off on a rant, I may

never stop. >>

OH ELAINE, GO AHEAD!!!! RANT AS MUCH AS YOU WANT! IT IS SOOOOO

FRUSTRATING....DRS. DON'T SEEM TO BE TOO CONCERNED....SOMETIMES I WISH THEY

HAD A MOTHER OR DAUGHTER THAT HAD THIS AND THEN LETS SEE WHAT THEY'D SAY.

HEAVEN FORBID IF THEY HAD IT.......THEY JUST MIGHT FIND A CURE. LOL

HOPE YOU HAVE A RESTFUL AND WONDERFUL WEEKEND.

HUGS

CLAUDIA

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Hi ,

I have about half the hearing on some days other days it seems to be fine. They

did test my hearing on a sort of bad day and the specialist said it was fine but

the girl who did the test said my hearing in that ear was half of what it was

before, so go figure. Who knows what the doc was thinking. Sometimes I think

that they think we are just histerical women that need to have something wrong

with them. Lord give me a break!!! Like we enjoy this crap! Opps, guess I better

not go off on a rant, I may never stop.

Elaine

Re: Pete/hearing

In a message dated 5/24/01 9:09:52 PM Pacific Daylight Time,

magic.cottage@... writes:

<< They look in my ear and say it's fine, but I still can't hear. Any

suggestions? >>

Elaine, this same thing happens to me. Drs. tell me the same thing. Even

when they did the hearing test and it showed minimal hearing loss.

hugs

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU

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Hi Janet,

Thanks for the info. My first flare was in my inner ear and it felt like someone

had hit me in the side of the face with a baseball bat. This went on for almost

a month and then went away. I went from doctor to doctor trying to find out what

it was. Finally they said I had fluid behind my ear drum and that eventually it

would go away. But when I look back I know it was a flare but I still don't

think the docs think that way. I guess that's what happens when you live in the

sticks, they just don't know enough about RP.

I'll keep at them and maybe some day they will listen.

Thanks,

Elaine

Re: Pete/hearing

In a message dated 05/25/2001 12:10:08 AM Eastern Daylight Time,

magic.cottage@... writes:

> Janet,

> I have a question for you. How did Pete convince his docs that his hearing

> lose was RP related? I have hearing that comes and goes and the docs don't

> do a thing. Ever time I have a change in air pressure my ear plugs up and

> living on a mountain really plays havic with this. The docs just look at me

> like I'm from Mars when I say that I can't hear. They look in my ear and

> say it's fine, but I still can't hear. Any suggestions?

>

Dear Elaine- We didn't convince them...they told us...the hearing and

Vestibular System are loaded with cartiledge...when there is a change in

barometric pressure Pete's hearing and eye sight become worse. Pete's doc

adjusts his prednisone according to the rise and fall of the barometer!!!!

Pete went to a Otoneurologist at Columcia Presbyterian Hospital in NYC who

does brain stem surgery and they did extensive testing and the results of

that testing got Pete Social Security Disability benefits in 2 weeks after we

had been trying for 6 months! Do you get " The Support Report " that R is

Editor of??(sorry about the poor grammar)..in it there are excellant articles

about RP and the eyes and ears. When the barometer changes Pete gets flares

and like any other flare it must be treated immediately to avoid permanent

damage( my opinion) If they had known Pete had RP when he had his first flare

he wouldn't have so much damage to his Vestibular System. If you would like

I'll look up the tests they did on Pete at Columbia and maybe your ENT will

do them. Personally I think you are better off going to a certifed

otoneurologist that hopefully has experience with RP or is at least willing

to learn. Let me know if I can help you in any other way. Love Janet

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,

Sometimes I wish that the docs had this. If they had to live in the pain and

frustration that we do each day, they would definately find a cure!!!

Elaine

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Dear Elaine, I had the same thing with one doctor I saw. She said while she

was in medical school she got everything she was learning. Like I was a

hysterical female. Another one couldn't wait for me to get out of her office.

I knew more about my disease than she did. She had never heard of it. Talk

about getting the bums rush. I do give her credit though she filled all my

presciptions for a year. Ha...If you give them too much info they think your

a hypochonderic and if you act ignorant you start from square one...I get in

that mood too...Your not alone....Sue

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Hi, wouldn't you know the last couple days I have a dead foot, well not dead,

just in a semi coma. It feels like a pinched nerve someplace. Goes down the

top of my leg and into the top part of my foot. It seems ya get rid of one

thing and get another. I do have to make a doc appointment for tuesday, last

day of Pred unless he decides to keep me on it. I do have to admit I like the

energy it gives me. I hate the 30#'s it gave me so we'll see what he has to

say.

We can then compare more doctor stories....Sue

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Yeah Right! Like they teach a lot about RP in Med school!!!

Sue,

I know what you mean!!! First my rhuemy said he had only seen 5 cases and now he

says he's seen lots of patients with RP. Give me a break!!! My GP didn't know

what it was but at least he's done some reading. I gave him Dr. Herman's report

but I still know more than both of them. Right now I have the mysterious leg

pain back, had it last November. I think that the RP is attacking the vein as it

can attack Type II collegen areas, but they don't seem to get it. My GP says

call the Rhuemy and then the Rhuemy dismisses it. It's so frustrating to be in

constant pain. The only time that I wasn't having trouble with RP was when I

wasn't working. I've only been back to work for three months and it's acting up

again. Anyhow, this is getting to be a lengthy email. Hope you are feeling well

today.

Take care,

Elaine

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Whenever your ready!!! Maybe a manual on how to relate to a doctor...Nah they

all have such big ego's that they wouldn't listen anyway....Sue

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In a message dated 05/25/2001 1:26:43 AM Central Daylight Time,

RCColloran@... writes:

<< They look in my ear and say it's fine, but I still can't hear. Any

suggestions? >> >>

Elaine, not too long ago I went to be feeling fine and got up the next

morning totally deaf in my left ear (especially scary since I am already deaf

in my right ear) Dr here couldn't find anyting wrong, sent me to the ENT who

did a hearing test and said I'd lost some of my haring (no kidding!), put me

on Pred and my hearing slowly approved (thank God), he kept checking every

few weeks and it seems to be stable now. The odd thing, is that I've lost

some of the low tones (others in the group have had the same thing), this is

unusual since it's usually the high tones that are affected. Do you have a

good ENT? Good luck! Love, Judy O

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Hi Judy,

They haven't sent me back to the ENT in over a year! I keep telling them about

my hearing coming and going and they don't do anything about it. I'm on Pred now

but it still comes and goes. who knows waht's up

Elaine

Re: Pete/hearing

In a message dated 05/25/2001 1:26:43 AM Central Daylight Time,

RCColloran@... writes:

<< They look in my ear and say it's fine, but I still can't hear. Any

suggestions? >> >>

Elaine, not too long ago I went to be feeling fine and got up the next

morning totally deaf in my left ear (especially scary since I am already deaf

in my right ear) Dr here couldn't find anyting wrong, sent me to the ENT who

did a hearing test and said I'd lost some of my haring (no kidding!), put me

on Pred and my hearing slowly approved (thank God), he kept checking every

few weeks and it seems to be stable now. The odd thing, is that I've lost

some of the low tones (others in the group have had the same thing), this is

unusual since it's usually the high tones that are affected. Do you have a

good ENT? Good luck! Love, Judy O

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