Welcome

[Guest guest]

Terri,

I would love to see someone write something about Cholesteatoma. I worked

in a Pharmacy for 10 years and never once did I hear of cholesteatoma. I

have always been interested in the medical field so I have done my share of

reading. Never once have I seen an article on this disease. Even after I

was diagnosed I found more information on the cholesteatoma website then in

any medical book. I feel so luck I am an adult and have this. I hate the

thought of any child going throught it and I know if one of my children had

it I would be very frusterated at the lack of information available. I know

I was misdiagnosed twice and I have read lots of stories about misdiagnoses

an article that reaches many people like parents magazine could possible

save the hearing of a child.

RE: Welcome

> >

> >

> > Greetings from London! It's 23 degrees and not raining so we're

> all feeling a little disorientated over here!

> >

> > I'm a newbie to this site and I've been reading with interest and

> I thought that it was about time it's about time I made contact and

> told my 'Cholesteotoma Tale'.

> >

> > I should briefly explain our health system in England first. We

> have a system called the National Health Service by which every

> individual pays a tax out of their earnings which goes towards various

> public services, one of which is the National Health Service. The

> principle is that everyone has access to whatever healthcare they may

> need without having to pay out ridiculous fees. Unfortunately, since

> it's inception in the '50s the system has become overloaded,

> underfunded and waiting lists for operations can stretch to years.

> It's become something of a political hot potato. Some people choose to

> pay for their healthcare (we call this 'going private') in the belief

> that they receive better attention in more comfortable conditions.

> This is probably true but you have to be well off to be able to do

> this.

> >

> > So... about six years ago I noticed that my right ear was leaking

> a foul smelling substance, I kept hearing clicking noises and I felt

> like there was something in my ear. I have a long history of middle

> ear infections and whilst working on fishing trawlers in Greece (I was

> working my way around the world at the time) I suffered a particularly

> bad infection that I believe was the start of this whole affair.

> >

> > I went to a GP ( General Practitioner, a local free doctor with

> whom I am registered on the National Health Service) who told me that

> I had a middle ear infection. I took his word for it and dutifully

> finished the course of antibiotics...to no avail. I went back after

> about six months and demanded to see an ENT specialist. He took one

> look in my right ear and told me that I needed an operation

> immediately to remove a 'tumour-like growth' from my ear. This alarmed

> me considerably as you can imagine so I went to the library to find

> out what the hell it was. I left the library even more worried!

> >

> > I had the operation, but they woke me up in the middle of the op

> to tell me that the Cholesteotoma was a lot bigger than expected and

> that they felt it only fair to warn me of all the dangers first (risk

> of cutting the facial nerve etc etc). So...I had a second operation

> which meant that the entire hearing mechanism was removed including a

> lot of the mastoid bone. I woke up, they told me that they thought

> they had got rid of it, but only time would tell.

> >

> > They hadn't. I eventually needed a third op to get rid of the last

> vestiges that had started to grow again. Also, although I had made

> great efforts to keep my ear dry, the inside lining of my ear was

> refusing to turn into dry skin which is an important part of the

> healing process. After a long haul of minor infections, fungal growths

> etc the lining finally turned into dry skin and I was told that I

> could have showers again and go swimming. I don't ever let my ear get

> wet these days though, because i'm paranoid and really don't want to

> make any trouble for myself.

> >

> > The bottom line is that I am well and healthy now although

> permanently stone deaf in my right ear. I saw a lot of people in

> hospital who had much worse diseases or complaints than mine. So

> ultimately I think of my story as one of hope although it took six

> years to get to this point.

> >

> > Regards to you all,

> > STU.

> >

> >

> _____________________________________________________________________

> > This message has been checked for all known viruses by Sourcetec

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> Service. For further information visit http://www.sourcetec.net or

> alternatively mail info@s...

> >

> >

[Guest guest]

hello...

i managed to find an article written in a UK broadsheet newspaper " the

Guardian " that suggests, that Wilde, might well have had the first

" recorded " surgery for cholesteatoma....it has been posted to 's site.

Some days following the article, the newspaper ran another story

re:cholesteatoma, not in any depth, nor of any real medical importance, but

it did bring to the attention of the " non suffering world " a small insight

into this terrible condition.

I agree though, that it is terribly difficult to get any information, let

alone articles that reach the public broadly. I also found that many GP's

(general practioners) knew very little about cholesteatoma, and that not all

ENT's are well versed. For an example, in the UK, in London, we have the

Royal ENT hospital, a hospital solely dedicated to ENT....within this

hospital there is a paediatric facility....and for the whole of this

hospital.....there is only one doctor that deals with paediatric

cholesteatoma, i think this just goes to show how rare a condition this is,

as it's not much provision for such a big institution.

But I agree with you terri.....anything that can even reach one

person....give one parent an insight into the types of questions to be

thinking about, can only be a wonderful thing.

[Guest guest]

,

I read The Guardian and live in London so I'd be interested to know where you found the articles regarding cholesteotoma (publication dates etc.) because I would like to read them.

Regards to all.

-----Original Message-----From: juliequill@... [mailto:juliequill@...]Sent: 03 October 2001 15:52cholesteatoma Subject: Re: Re: Welcomehello...i managed to find an article written in a UK broadsheet newspaper "the Guardian" that suggests, that Wilde, might well have had the first "recorded" surgery for cholesteatoma....it has been posted to 's site.Some days following the article, the newspaper ran another story re:cholesteatoma, not in any depth, nor of any real medical importance, but it did bring to the attention of the "non suffering world" a small insight into this terrible condition.I agree though, that it is terribly difficult to get any information, let alone articles that reach the public broadly. I also found that many GP's (general practioners) knew very little about cholesteatoma, and that not all ENT's are well versed. For an example, in the UK, in London, we have the Royal ENT hospital, a hospital solely dedicated to ENT....within this hospital there is a paediatric facility....and for the whole of this hospital.....there is only one doctor that deals with paediatric cholesteatoma, i think this just goes to show how rare a condition this is, as it's not much provision for such a big institution.But I agree with you terri.....anything that can even reach one person....give one parent an insight into the types of questions to be thinking about, can only be a wonderful thing.

[Guest guest]

Hi all, I'm not keeping very good track here. I think we've got some new

folks here. Welcome to you. wish we were all meeting under different

circumstances. I will try to be better about keeping up as gets better.

This may be another case of the treatment being as bad or worse than the

problem. Of course, since the cardiologist gave him the problem, we don't

know what it would have been like if we'd just left well enough alone.

LOL,

Anne

[Guest guest]

Hi all, I'm not keeping very good track here. I think we've got some new

folks here. Welcome to you. wish we were all meeting under different

circumstances. I will try to be better about keeping up as gets better.

This may be another case of the treatment being as bad or worse than the

problem. Of course, since the cardiologist gave him the problem, we don't

know what it would have been like if we'd just left well enough alone.

LOL,

Anne

[Guest guest]

Ethel, thank you so much for your lovely letter of explanation and welcome to the many RBers just joining us. I know this has been a very traumatic time for all of them..especially dear Marge, they will be a wonderful asset to the rheumatic.org group I know...thank goodness I was already here, I am computer illiterate as it is..thanks again, DEBB

[Guest guest]

Welcome from lie (RA 2 years, AP 9 mo.)

I am relatively new to this group and the emails today to newcomers has been very informative for me. Thanks for all who carry the main responsibility of the website and this group. You are very much appreciated.

lie

rheumatic Welcome

We have had an unusual influx of new subscribers to our group the last couple of days. We sincerely welcome you and hope you will soon feel at home with us.

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi ,

Just wanted to stop by and welcome you to the group. I too have cages in my

back (I have 3) of them plus fusion's too.

And I am still in lots of pain. But, hope it will stop soon.

Take care,

[Guest guest]

Hi Sharon,

I am glad to hear that you are done the therapy. How are you feelng

now? I hope that you are doing better and have a positive outcome!!! I

have missed so many posts on here that I didn't know that you were

done.... Good Luck Girl! ;o Let me know what your labs are. OK?

I also want to welcome all of the newcomers here. My name is Diane and I

am from New Jersey. I did the interferon in 96-97 and I had to be

stopped in the 6th month. I was given a 2 week reprieve and put on 1/2

dses. IAgain I had to be stopped and I was told by 3 Dr's that I can

never do any type of Interferon treatment again. I also can not have a

transplant due to a rare bleeding disorder. I watch what I eat and pray

lot!! ;o I have not been here much lately. I have had a few family

problems and family health issues to deal with. Not to mention the

deaths of close friends... (non Hep related)

We have a very unique and sometimes crazy group going here. We talk of

anything and everything in here. I call this my dumping ground. No

matter what we write, someone is here to relate and give comfort or

praise......

We keep our guys here in line too!!!! Don't we girls? Again. Welcome

Aboard Everyone!!!!!!! Glad to have you. Jump in any time your little

heart desires.... Unlike some groups out there, we are not a click....

We all stick together as a united group..... WELCOME FELLOW HEPPERS and

Family Members...... Oh!!! We also have a few in here who do not have

hep C but want to learn about it and vent because their husband or a

family member has Hep... They also have good info: to share........

Have A Super Day Everyone! My Mom is being transferred today for a blood

transfusion. She collapsed in therapy yesterday. The Dr. feels that the

blood willgive her more oxygen and normalize her BP I really appreciate

all of you being here for me andI am sorry that missed out on Sharing a

lot of important info:....

Sending Angel Hugs to all.... Love you guys and gals...... ;o

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

Sharon,

I am soooooooooo glad to hear that you are feeling good....... It is

probably good for you to be out of the house away from all of the

teen-agers for a while..... Girl I remember those days. I sure

do!!!!!!!! The time will come when you will have some quiet time.....

But don't think once they leave that they will stay gone.... LOL.....

How are you doing with the part time job? Don't overdue Sharon......

Glad to hear you are finally done the shots..... That in itself is

heaven!!!!!!!!

Terry. How are things going there with your son ? Fill me in.....

Hope all is going well on your end.....

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

[Guest guest]

> I hope this group will help others like myself who would prefer

> talking to other people about how a drug affects them , rather than

> just read the information you get at the drugstore.Feel free to

> discuss any anti depressant and how it affects you .

I have suffered from depression and anxiety for a couple of years..

Ive tried alot of different drugs..groups.. the whole cornucopia of

medical treatments.. not much success.. I started on Lexapro a month

ago.. There is a profound difference in the way I feel about myself..

my life.. my future.. I take 10mg a day.. My legs cramped up for a

few days, other than that.. I havnt had any adverse side effects..

" Free at Last "

Mike Howell

NCAA Umpire

[Guest guest]

Hi Jo,

What a funny intro.! Welcome to the group. Did you say that you're AS

too?

Theresa

[Guest guest]

Welcome to all new list members !!

Fania

[Guest guest]

Welcome Meg,

I'm from Strongsville.

Theresa

[Guest guest]

Welcome to Sheila and Aleah.You found a grat place here.I'm waiting

to start treatment.Best wishes to both of you. Tammie

Thank You Tammie and everyone else for the warm welcomes. And Good luck Tammie on starting tx.

Take Care

Sheila

[Guest guest]

Let me add my welcome to Sheila and Aleah. I will be starting treatment in Nov. I'm from Sacramento, CA. And I think I'm the oldest member of this group, 63. Got HCV in 1989 from a blood transfusion, and it is virulent, I'm already Stage 4 cirrhosis.

C

Re: [ ] welcome

Welcome to Sheila and Aleah.You found a grat place here.I'm waiting to start treatment.Best wishes to both of you. TammieThank You Tammie and everyone else for the warm welcomes. And Good luck Tammie on starting tx. Take Care Sheila

[Guest guest]

In a message dated 10/15/03 3:42:26 PM Central Daylight Time, ibecynful@... writes:

Let me add my welcome to Sheila and Aleah. I will be starting treatment in Nov. I'm from Sacramento, CA. And I think I'm the oldest member of this group, 63. Got HCV in 1989 from a blood transfusion, and it is virulent, I'm already Stage 4 cirrhosis.

C

Thank You . I am from Missouri and I have been on TX this coming Sat will be week 26 for me. I will have 22 more weeks to go. I met a lady in my hep class I went to about starting treatment, she was also your age with the same stage as you. Like you she contacted HepC from a transfusion only hers was in the 70's. By the time she knew she had HepC she was stage 4 cirrhosis. She was also a diabetic and had RA. I heard from her the other day and she is clearing hers. So there is hope =) I am 40 and know how rough it can be but it is worth the try. Good luck and Bless you. If you ever need an extra ear im am always here. So sorry we all have to go threw this horrible disease but we all do need someone that really understands. And that is all of us that have it.

Sheila

[Guest guest]

Thanks, Sheila, that's so encouraging!

C

Re: [ ] welcome

In a message dated 10/15/03 3:42:26 PM Central Daylight Time, ibecynful@... writes:

Let me add my welcome to Sheila and Aleah. I will be starting treatment in Nov. I'm from Sacramento, CA. And I think I'm the oldest member of this group, 63. Got HCV in 1989 from a blood transfusion, and it is virulent, I'm already Stage 4 cirrhosis. CThank You . I am from Missouri and I have been on TX this coming Sat will be week 26 for me. I will have 22 more weeks to go. I met a lady in my hep class I went to about starting treatment, she was also your age with the same stage as you. Like you she contacted HepC from a transfusion only hers was in the 70's. By the time she knew she had HepC she was stage 4 cirrhosis. She was also a diabetic and had RA. I heard from her the other day and she is clearing hers. So there is hope =) I am 40 and know how rough it can be but it is worth the try. Good luck and Bless you. If you ever need an extra ear im am always here. So sorry we all have to go threw this horrible disease but we all do need someone that really understands. And that is all of us that have it.Sheila

[Guest guest]

> I hope this group will help others like myself who would prefer

> talking to other people about how a drug affects them , rather than

> just read the information you get at the drugstore.Feel free to

> discuss any anti depressant and how it affects you .

I am very concerned about these anti-d. I have suffered from deep

depression for years and started on Prozac when it came out. After a

while it did not work. Then on to zoloft, celexia and now 30 mg

Lexapro and 25 mg of Seraquel (the S for a year). I am back depressed

and much weight and feel as though these drugs may do something to the

brain which makes a person more depressed. Where can I get more

knowledge on this question.

thanks,

[Guest guest]

hello is there any young people that in there 30s that have PA . Ilove to find

people i cant talk that have the same thing, well i have pa for about 97 i;ve

been on enbrel for about a yr and work great but i do have to say im going

taking on shot a week instead of two , i really don't like shots ,but the

question i do have i do see me gaining alot of weight on this i ask the nurse

from enbrel services and she said that she did have a a number of people that

did gain weight on this , any help would be great , thanks monicaNY

oh by the way im going tothe dr on tues i haven't seen the dr in about a yr

because i have no insurance so im in the encourage program and im going to see

next week i know i should get blood test done because me stomach have been

bothing me i think it heart burn but i never get heart burn and heart problem

run in my family . ohwell just venting nothing really new i just wish i can find

a good job , i can see that i forget the little things i think it from the meds.

any body know that .bye

snowbound22003 <mlw402@...> wrote:

Welcome Carl!

And thanks for the good info. Hope you enjoy our group.

Marti

[Guest guest]

Hi and welcome,

Sorry, I'm not in my 30's any more but I used to be............Does that

count? Lol

Hope you get some help. There seems to be plenty of people on Enbrel in this

group.

Good luck,

[Guest guest]

thanks martin for the hello. stay cool bye

martincoyless@... wrote: Hi and welcome,

Sorry, I'm not in my 30's any more but I used to be............Does that

count? Lol

Hope you get some help. There seems to be plenty of people on Enbrel in this

group.

Good luck,

[Guest guest]

Hi

I am 33 and they think I have pa. I have a lot of strange things happening to my

body lately. I am on Vioxx and Prednisone at the moment. That is causing a lot

of swelling and high blood pressure. This is all new to me. If you have any

advice or what is normal, let me know.

Meadows

[Guest guest]

Hi and welcome,

Sorry, but I have never been prescribed Vioxx or Prednisone so can't help

you there but certainly someone here will be able to.

Maybe you could see your GP about trying other meds until you are happy. I

remember when I was first diagnosed with PA it took several months of trying

different meds before They found one that seemed to work(The others didn't

cause swelling or high BP or anything like that, they just didn't do anything)

Funnily enough, I am currently on a med that can affect your BP but so far I

have been fine.

Hope someone can help you with this.

Good luck,

[Guest guest]

Thankyou for the welcome! I really appreciate it!

HUGS~