Re: Cholesteatoma or Hypochondria

[Guest guest]

Dawn

I have had ear problems for some 16 or 17 years.

I first noticed differences when I was around 24 years old, and serving in

the Royal Air Force. So, as you see, it's not only parents who have

problems being diagnosed with Cholesteatoma - or indeed any ear problems -

but even I, as the patient, remember finding it difficult describing what

precisely were the problems I had and also in pushing for the diagnosis that

may have helped me more if it had been earlier than it was, when I was 37.

Your mother should feel no guilt whatsoever. I don't... and I was the one

doing the pushing, feeling that people didn't believe me, believing that

people thought I was 'putting it on'.

Wishing you and yours well over this special time of year.

Kazz

xx

[Guest guest]

Hi Dawn,

I have suffered with ear infections/problems since a very small child. My mother went through the rounds with the regular doctor, who then referred us to an ENT. They constantly gave me ear drops and antibiotics and sent me on my way. It took almost 5 years of constant appointments until we finally found a Doctor who diagnosed the c-toma. It was difficult on my mother as well. She felt she should have done more. But now that we know so much more about c-toma, we have found how common it is for it to be mis-diagnosed. I hope your mother will let go of those guilty feelings. Take care,

IlonaDawn <dawn.miller2@...> wrote:

I'm interested in hearing from anyone who, as a sufferer or a parent of a sufferer, had problems getting the medical practitioners to take you seriously.At 7 (1978) I became ill, but ear infections played a small part in this. Throat and chest infections were the main complaint, along with stomach upsets, lack of appetite and extreme lethargic-ness, headaches. I was however deaf on the right size. I was considered to have behaviour problems or be a hypochondriac , and my Mum had to fight to get anyone to see that I was ill.Eventually cholesteatoma was diagnosed and surgery performed. When the cholesteatoma returned 6 month after the first removal the ENT specialist told my Mum this was not possible and again she had a fight on her hands.There is a lot more to this story…. But I wont go on.My Mum

still, (20 years on) blames herself and thinks she should have done more. I would like to hear of anyone with similar stories, so I can share these with my Mum, in the hope it will help here levitate some of the unnecessary gilt she feels.Dawn

[Guest guest]

I must pass on a big thank you to all those who replied to my

message. When I went to visit my Mam I took her a mountain of

printouts about c-toma and everyone's stories.

Her first reaction was to get very upset about what you have all

been through and she was shocked to find how aggressive the c-toma

can be. A couple of days later we talked and I managed to get her to

understand that I was very lucky to have had her fighting my case.

She now had a new understanding and I'm sure she has begun to let go

of the guilt she feels.

After my first surgery (1978) my Mam was told I had an abscess in my

ear and my Nana was told I had a cyst. This had caused an argument

between them at the time. Now my Mam understands why they were told

this, the c-toma would have been referred to as a cyst and is often

accompanied by abscess. Bingo!

My 7 year old daughter has had a few ear infections this winter, the

same had happened in winter 2001. She also complains of having a

sore tummy a lot. I am now really paranoid that she is developing a

c-toma. The only thing that keeps me from panicking is that her

hearing was okay when she had her last hearing test. I would love

for her to have a CT scan so I could put these thoughts from my

head, but we live in the UK and that's not going to happen.

A healthy New Year to you all

Dawn

[Guest guest]

Happy Birthday Mountain Mama......!!!!

Sincerely ,

Renonda

(s Mom)

[Guest guest]

Hi Dawn, I have c-toma to. My Mom is 73, and I am 53 tomorrow. She

use to cry and feel guilty about me having this. It took a long time

to convience her it was not her fault. I had congential c-toma. It

went undiagnosed for a long time! So my Mom suffered all the ear

aches and crying right along with me. She is my biggest support. I

am the one who went through this, but so did she, and my family. Our

Moms, Dads, and family and friends, are special people that God saw

fit to be strong enough to help us through it. So your Mom is a very

special lady! I do hope she finds peace in her heart, and continues

to go on knowing she did nothing wrong, and that she is truly a

wonderfull Mom! You are lucky to have her, but then you all ready

know that! Have a wonderfull New Year!

> I must pass on a big thank you to all those who replied to my

> message. When I went to visit my Mam I took her a mountain of

> printouts about c-toma and everyone's stories.

>

> Her first reaction was to get very upset about what you have all

> been through and she was shocked to find how aggressive the c-toma

> can be. A couple of days later we talked and I managed to get her

to

> understand that I was very lucky to have had her fighting my case.

> She now had a new understanding and I'm sure she has begun to let

go

> of the guilt she feels.

>

> After my first surgery (1978) my Mam was told I had an abscess in

my

> ear and my Nana was told I had a cyst. This had caused an argument

> between them at the time. Now my Mam understands why they were told

> this, the c-toma would have been referred to as a cyst and is often

> accompanied by abscess. Bingo!

>

> My 7 year old daughter has had a few ear infections this winter,

the

> same had happened in winter 2001. She also complains of having a

> sore tummy a lot. I am now really paranoid that she is developing

a

> c-toma. The only thing that keeps me from panicking is that her

> hearing was okay when she had her last hearing test. I would love

> for her to have a CT scan so I could put these thoughts from my

> head, but we live in the UK and that's not going to happen.

>

> A healthy New Year to you all

>

> Dawn

[Guest guest]

Thank you! I am proud to be every bit of this " 53 " . I am still here!

And it has been a life long battle, but goes to show you, you can

live a long life with this condition. I am proof! Now for the

presants! :)

-- In cholesteatoma , nonnykay1@a... wrote:

> Happy Birthday Mountain Mama......!!!!

> Sincerely ,

> Renonda

> (s Mom)