Re: New to the group and introduction

[Guest guest]

,

You are one amazing person. I think you'll find a lot of folks on this

list with BAHA experience that will be able to comment.

I have a question for the list:

I finally got to see my otologist/neurotologist last Thursday after a

bout with a bad ear infection. It turns out my ear was just scary

looking for most ENTs, but not for Dr. Hirsch.

I also need to replace a hearing aid and to get more help for hearing in

meetings. I plan to switch to a Behind-the-Ear instead of In-the-Ear for

the aid. I'm also hoping to get an assisted listening device that

includes a telecoil in the hearing aids and a loop that one can put

around the perimeter of a meeting room. Has anyone tried one of these

loops? Do you think I'll have better one-on-one communication with a

shift to the Behind-the-Ear aids?

My hearing can only be improved so much owing to nerve damage, but I

want it to be the best it can be.

Many thanks in advance for your advice.

Matt

s wrote:

>

> Hello everyone

>

> This is s here from Australia,

>

> I am amazed this group exists. I thought I was the only person with

> this condition. For over forty years I have dealt with cholesteatoma

> on my right ear. I am now a profoundly deaf lady living in Australia.

> I have a 100DB loss on my left ear due to unknown causes, and very

> profound loss on my Cholesteatoma right ear my hear loss is 120DB on

> the right. I use an old Cochlear implant left ear and considering my

> options in my right ear. My audiologist think maybe a bone conduction

> hearing aid may help me to pick up vibrations in right ear to hear

> traffic for my mobility.

>

> I was a premature baby 24 week baby and weighed 1 pound 2 ounces. I

> have the eye condition of Retinopathy of Prematurity with a VA of

> 1/90. That means what a well functioning eye sees at 60 meters I have

> to be a metre away to see it. I use a screen reader and a Braille

> display for my computer.

>

> For mobility I use a beautiful guide dog, and for communication I am a

> fluent signer. I use Tactile Sign language.

>

> My surgery happened 16 years ago have had 5 ops on right ear and 3 on

> the left ear. I have absolutely nothing in that ear I had a radical

> mastoidectomy lost all the bones, ear drum, part of my cheek bone and

> I have two massive holes behind the ear because the amount of surgery

> meant the skin was very thin.

>

> Parts of the CToma was found in the outer membrains of my brain and

> wrapped around the juggler vain.

>

> I will write in another message because there are many question how

> other folks manage with this condition.

>

> That’s it for now, thanks to my new friend Kazzy help me to get on

> this group and told me about it.

>

> Thanks again,

>

> s

>

>

--

[Guest guest]

Hello,

Welcome and I feel for your mother. Just wondering, has she tried the

biologics? in PA

[ ] New to the group and introduction

Hello,

I am new to the group and just want to give a brief background. I am

45 years old, female, with psorasis. I have been the primary caregiver

for my mother. She is now 66 years old. She was has had RA since age

33. My grandfather has had RA and has now passed away. My mother has

been on every medication they make, shots, treatments, and braces for

her hands, arms, etc. I come here with those experiences to help

others. Mom has also been on prednisone for a very long time if anyone

needs information on this. We have been told she has one of the worst

cases of RA ever seen before by doctors. Ask me any questions and I

will answer them according to what I have seen and experienced with

her. I have psorasis which is a form of the same auto-immune disorders

and will gladly talk about this also. My mother is alive today and has

fought against RA for so long she deserves a medal. Sorry I said this

would be brief - any writers want a good book about R.A. then we

definitely have a story to tell. Thank you for allowing me to be part

of this group.

[Guest guest]

Welcome and many greetings from Greece as well !

 

--- Στις Πέμ., 21/08/08, ο/η McNally <McNacks@...>

έγÏαψε:

Από: McNally <McNacks@...>

Θέμα: Re: [ ] New to the group and introduction

ΠÏος:

ΗμεÏομηνία: Πέμπτη, 21 ΑÏγουστος 2008, 20:28

Hello,

Welcome and I feel for your mother. Just wondering, has she tried the biologics?

in PA

[ ] New to the group and introduction

Hello,

I am new to the group and just want to give a brief background. I am

45 years old, female, with psorasis. I have been the primary caregiver

for my mother. She is now 66 years old. She was has had RA since age

33. My grandfather has had RA and has now passed away. My mother has

been on every medication they make, shots, treatments, and braces for

her hands, arms, etc. I come here with those experiences to help

others. Mom has also been on prednisone for a very long time if anyone

needs information on this. We have been told she has one of the worst

cases of RA ever seen before by doctors. Ask me any questions and I

will answer them according to what I have seen and experienced with

her. I have psorasis which is a form of the same auto-immune disorders

and will gladly talk about this also. My mother is alive today and has

fought against RA for so long she deserves a medal. Sorry I said this

would be brief - any writers want a good book about R.A. then we

definitely have a story to tell. Thank you for allowing me to be part

of this group.

[Guest guest]

Welcome

Welcome to our humble group all that is new. I havent been posting

very much cause my RA is acting up. I start humira injections the 28

th of this month. Keep me in your prayers.

Wow M, you have been through a lot sweety, and your family. I

have fibro and RA. I will appreciate any information you pass along.

So sorry for your hardship you deserve a metal also sweetheart.

gentle hugs

Clora

[Guest guest]

Yes Mom has been or tried all of them. The one that worked the best

was Enbrel. She began Enbrel when it first came on the market. She

was unable to walk anymore and in a nursing home approximately year

1999 to 2003. She had both knees replaced in 2000. She started

Enbrel sometime during this period (not sure on which year). She

counted the days of how long it would take to start working.

Improvement began in one month like a miracle. Then she had to learn

to walk again since in bed for four years. I can remember when she

had walked 100 steps and she was amazed.

She learned to walk again and was able to leave the nursing home into

an apartment through the CBA program here in Texas.

In 2006 she began to get the infections from having her immune system

so low on enbrel. She went through several attempts of going off of

it, and trying to get back on it. Finally she could no longer take

it. The Remicaid did absolutely nothing for her, and the other ones

also were not effective or doctor thought infection risk was too high

since experience with Enbrel.

She is not on any of them anymore. She also cannot walk again, but

can stand up for a couple minutes some days.

>

> Hello,

>

> Welcome and I feel for your mother. Just wondering, has she tried

the biologics? in PA

> [ ] New to the group and introduction

>

>

> Hello,

>

> I am new to the group and just want to give a brief background. I

am

> 45 years old, female, with psorasis. I have been the primary

caregiver

> for my mother. She is now 66 years old. She was has had RA since

age

> 33. My grandfather has had RA and has now passed away. My mother

has

> been on every medication they make, shots, treatments, and braces

for

> her hands, arms, etc. I come here with those experiences to help

> others. Mom has also been on prednisone for a very long time if

anyone

> needs information on this. We have been told she has one of the

worst

> cases of RA ever seen before by doctors. Ask me any questions and

I

> will answer them according to what I have seen and experienced

with

> her. I have psorasis which is a form of the same auto-immune

disorders

> and will gladly talk about this also. My mother is alive today

and has

> fought against RA for so long she deserves a medal. Sorry I said

this

> would be brief - any writers want a good book about R.A. then we

> definitely have a story to tell. Thank you for allowing me to be

part

> of this group.

>

>

>

>

>

>

[Guest guest]

Mom has also done the methotraxate shots once a week. On and off over

the years - many years - it does help but not as much as she would hope

it did. Without it she does notice a difference.

>

> Welcome

>

> Welcome to our humble group all that is new. I havent been posting

> very much cause my RA is acting up. I start humira injections the 28

> th of this month. Keep me in your prayers.

>

> Wow M, you have been through a lot sweety, and your family. I

> have fibro and RA. I will appreciate any information you pass along.

> So sorry for your hardship you deserve a metal also sweetheart.

>

> gentle hugs

> Clora

>

[Guest guest]

M. and Group;

I am so sorry to hear how your mother suffered. I am happy to hear

that something worked for a while for your mom. Life is so unfair

sometimes. What kept me going was taking a closer walk with Jesus.

Everything became bearable the second I became a child of God. I know

many people have different religions, I just wanted to tell what

worked for me.

Gentle hugs

Clora

[Guest guest]

Hi - my heart goes out to your mother. What an emotional and

physical roller coaster ride she has been on in the past 9 years.

Has she considered taking part in a clinical study of some kind since

the other meds out there don't work for her? Its sad when there are

all kinds of advances in medicine, yet there are still people who

can't be helped. May God Bless you and your mother. She really does

sound like a trooper in spite of it all.....Doreen

--- In , " susanmarie1900 " <skarney@...>

wrote:

>

> Yes Mom has been or tried all of them. The one that worked the

> best was Enbrel. She began Enbrel when it first came on the

> market. She was unable to walk anymore and in a nursing home

> approximately year 1999 to 2003. She had both knees replaced in

> 2000. She started Enbrel sometime during this period (not sure on

> which year). She counted the days of how long it would take to

> start working.

> Improvement began in one month like a miracle. Then she had to

> learn to walk again since in bed for four years. I can remember

> when she had walked 100 steps and she was amazed.

>

> She learned to walk again and was able to leave the nursing home

> into an apartment through the CBA program here in Texas.

>

> In 2006 she began to get the infections from having her immune

> system so low on enbrel. She went through several attempts of

> going off of it, and trying to get back on it. Finally she could

> no longer take it. The Remicaid did absolutely nothing for her,

> and the other ones also were not effective or doctor thought

> infection risk was too high since experience with Enbrel.

>

> She is not on any of them anymore. She also cannot walk again, but

> can stand up for a couple minutes some days.

>