Re: hello just found this group

[Guest guest]

Hello sorry to hear that you also have to deal with this

horrible condition. I too suffer from dizziness alot as have c-toma

in both ears. I have two small children so also not working at the

moment, like yourself I find it an emotional drain and am constantly

tired.

I think it is important to remember that you are not alone, this

support group has helped me feel better about things already and I

only joined a couple of months ago. Although our loved

ones/partners & families may not actually have this condition they

still suffer too. My Huband has to listen to me moan about this

most days and because I go to bed with cotton wool in both ears due

to constant drainage my Husband often gets up in the night with our

children (because I don't hear them)as the youngest is only 2.

He too often feels drained and tired due to lack of sleep and still

goes to work the next day. My point is although we often feel alone

and depressed, with the support of others we can achieve anything.

A very close member of my family died of breast cancer 4 months ago

(aged 44) and it put things into perspective it made me realise that

although I have to deal with c-toma I am very lucky to be here and

take each day as it comes.

Hope you feel better soon

Zoe.

cholesteatoma , " heavydmf28 " <heavydmf28@y...> wrote:

>

>

> hey every one my name is david and have been batteling this c-toma

> for 3 years and keeps coming back getting ready to have 3rd

surgary

> soon in next 2-weeks already lost all of hearing in right ear and

all

> ear bones and almost all surrounding bones around ear wall had

> mastoidectomy hope i spelled right. Since all this has happend

> havent been able to work for over a year now and family is

starting

> to suffer becouse of it my wife has finally talked me into trying

for

> disability but it took some doing since i love to work and was

> determined to get better but as time goes on i find i am getting

> worse dizziness is very bad like nothing i had ever experienced

have

> to energy and am weak sick to stomach all the time and have went

into

> major depression and have developed a severe social anxiaty

dissorder

> very scared about next surgury c-t scan didnt look good and

> possibilities of having spread to inner ear and maybe what was

left

> of surrounding bone of ear seam to be in alot of paind all the

time.

> something strane has happend over the past couple of months right

> side of tongue is numb somedays more so than others. sometimes i

> feel that death is a better alternative than to keep having these

> surguries. but my kids need me so i go on . well by for now thank

> you for hearing me out

[Guest guest]

Hello again I forgot to ask did you manage to get disability?

I was just wondering as some people in this group maybe interested

in this as some seem to occur large medical bills. I have all my

treatment via the NHS service in the UK so I am one of the lucky

ones but others may be interested with any info you may wish to

share. Just a thought for the group????

Zoe.

>

>

> hey every one my name is david and have been batteling this c-toma

> for 3 years and keeps coming back getting ready to have 3rd

surgary

> soon in next 2-weeks already lost all of hearing in right ear and

all

> ear bones and almost all surrounding bones around ear wall had

> mastoidectomy hope i spelled right. Since all this has happend

> havent been able to work for over a year now and family is

starting

> to suffer becouse of it my wife has finally talked me into trying

for

> disability but it took some doing since i love to work and was

> determined to get better but as time goes on i find i am getting

> worse dizziness is very bad like nothing i had ever experienced

have

> to energy and am weak sick to stomach all the time and have went

into

> major depression and have developed a severe social anxiaty

dissorder

> very scared about next surgury c-t scan didnt look good and

> possibilities of having spread to inner ear and maybe what was

left

> of surrounding bone of ear seam to be in alot of paind all the

time.

> something strane has happend over the past couple of months right

> side of tongue is numb somedays more so than others. sometimes i

> feel that death is a better alternative than to keep having these

> surguries. but my kids need me so i go on . well by for now thank

> you for hearing me out

[Guest guest]

-

I understand your feelings. It is so draining to have to deal with this over

and over and never having things be quite right. We are all here with you.

le

----------

>From: heavydmf28 <heavydmf28@...>

>cholesteatoma

>Subject: hello just found this group

>Date: Tue, Oct 19, 2004, 12:14 AM

>

>

>

>

> hey every one my name is david and have been batteling this c-toma

> for 3 years and keeps coming back getting ready to have 3rd surgary

> soon in next 2-weeks already lost all of hearing in right ear and all

> ear bones and almost all surrounding bones around ear wall had

> mastoidectomy hope i spelled right. Since all this has happend

> havent been able to work for over a year now and family is starting

> to suffer becouse of it my wife has finally talked me into trying for

> disability but it took some doing since i love to work and was

> determined to get better but as time goes on i find i am getting

> worse dizziness is very bad like nothing i had ever experienced have

> to energy and am weak sick to stomach all the time and have went into

> major depression and have developed a severe social anxiaty dissorder

> very scared about next surgury c-t scan didnt look good and

> possibilities of having spread to inner ear and maybe what was left

> of surrounding bone of ear seam to be in alot of paind all the time.

> something strane has happend over the past couple of months right

> side of tongue is numb somedays more so than others. sometimes i

> feel that death is a better alternative than to keep having these

> surguries. but my kids need me so i go on . well by for now thank

> you for hearing me out

>

>

>

>

>

>

>

>

>

>

[Guest guest]

--- Hi there, I am so sorry that you are suffering from really bad

dizziness too. My dizziness started after my 2nd C-toma/mastoidectomy

surgery where they went in and tried to reconstruct the hearing

bones. After that I was extremely dizzy, nauseous, scared, you name

it, I felt it. In my 3rd surgery, they had to remoe the fake bone as

they thought it might be the problem. I felt a whole lot better

after that surgery and the dizziness eased up a bit. That was in JUne

of 2002 and I still have dizzy spells. But now I know what to expect

and I dont get as anxious. There is a really good dizzy support group

that I am a part of. It is www.thedizzylounge.com/

I can sympathize with you about not being able to work. I havent

worked in over 3 years due to dizzys. I cant drive, I cant stand

shopping, due to the harsh flouresent lights. ect. Please come to the

dizzy support group. I am cleocat on there. We are a great group and

support each other a lot. God Bless you and I hope you feel better.

DO NOT GIVE UP!! Your family needs you, Charla

In cholesteatoma , " heavydmf28 " <heavydmf28@y...>

wrote:

>

>

> hey every one my name is david and have been batteling this c-toma

> for 3 years and keeps coming back getting ready to have 3rd surgary

> soon in next 2-weeks already lost all of hearing in right ear and

all

> ear bones and almost all surrounding bones around ear wall had

> mastoidectomy hope i spelled right. Since all this has happend

> havent been able to work for over a year now and family is starting

> to suffer becouse of it my wife has finally talked me into trying

for

> disability but it took some doing since i love to work and was

> determined to get better but as time goes on i find i am getting

> worse dizziness is very bad like nothing i had ever experienced

have

> to energy and am weak sick to stomach all the time and have went

into

> major depression and have developed a severe social anxiaty

dissorder

> very scared about next surgury c-t scan didnt look good and

> possibilities of having spread to inner ear and maybe what was left

> of surrounding bone of ear seam to be in alot of paind all the

time.

> something strane has happend over the past couple of months right

> side of tongue is numb somedays more so than others. sometimes i

> feel that death is a better alternative than to keep having these

> surguries. but my kids need me so i go on . well by for now thank

> you for hearing me out