Re: 34 year old male with Cholesteatoma from Tennessee

[Guest guest]

Hi, My names Chasity and I'm 25.. I've been battling Cholesteatoma for most of my life. Like you I had cronic ear infections as a young child, had many surgeries to have tubes put in and removed befor I started having my surgeries for Cholesteatoma.. I'm not real sure how your Dr. will do yours, but mine have always been the same.. The cut behind the ear and go in that way. I don't really know how long it takes maybe an hr. or so. When you are done your head my be wraped in lots of guaze to hold the bandage on your ear. Your ear will be packed with guaze that you will have taken out when you go back for your post op. visit. You will be able to change the guaze around your ear after a few days, but will not be able to get that ear wet. The stiches should be dissolving ones that will be on the inside of the ear. I didn't experiance much pain, but there was some.. I hope this helps a little...Good luck to you!

Chasity

[Guest guest]

Hi Greg

I'm Kazzy, and am 44 yrs old from England, UK. I had adult-onset cholesteatoma, so though I had the 'normal' childhood illness (to include the occasional infection), I didn't have any real infections as a child; as an adult, though, it's a totally different story - I have had quite possibly hundreds of infections and perforations and continue to do so to this day.

I had a Modified Radical Mastoidectomy (CWD) to remove the tumour in 1999; the operation took around 3-4 hours I believe. The surgeon went in through the canal (I had only 6 external stitches) leaving me with a widened ear opening which, though visible, is certainly not off-putting in any way to me or those who matter to me. The story of my cholesteatoma can be found on my website - http://www.kazbat.co.uk - click on the link to 'Kazzy kant hear' and, if you're interested in the Bone Anchored Hearing Aid I know wear as a result of my related hearing loss, click on the link to 'Kazzy kan hear' too.

Many of the members of this wonderful group have told their stories previously; have a look through the previous messages - they make for interesting reading, especially if you wish to compare notes, so to speak, and learn how different, whilst similar, cholesteatoma can be in different patients.

All the very best to you.

Kazzy :-)

http://www.kazbat.co.uk

Deaf... but not dumb

"Remember: It is not tragic to have a disability. Disability only becomes a tragedy when society fails to provide the things one needs to lead one's life." (Anonymous)

34 year old male with Cholesteatoma from Tennessee

Hello!My name is Greg Ledbetter, from Knoxville, Tn. I was diagnosed with this about two weeks ago. I'm presently on Vanco & Cefepime thru IV pic line for 12 days. I'm having surgery on Oct. 25 at St. Hospital by Dr. Schwaber.What should I expect from the surgery?I've already, lost all hearing in my left ear. I had mastoid surgery about 25 years ago and lost most of my hearing about 5 years ago. I've had chronic ear infections my whole life.Would like to speak with anyone who has had this surgery and maybe anyone that might have used my Dr. above.Thanks,Greg Ledbetter865-591-4802Gregledbetaol

[Guest guest]

Thanks for responding Chasity...why does the cholesteatoma continue

to reappear? It seems like some people have continuous surgeries

while others just have it once.

Right now, I'm having to fight my insurance company. My local ENT

recommends a specialist in this field and my insurance wants me to

see another doctor in my network.

Did you have external IV pic line antibiotics before or after the

surgeries?

Greg

www.myspace.com/gledbetter

(I have pictures posted of my IV Pic Line)

>

> Hi, My names Chasity and I'm 25.. I've been battling Cholesteatoma

for most

> of my life. Like you I had cronic ear infections as a young child,

had many

> surgeries to have tubes put in and removed befor I started having

my surgeries

> for Cholesteatoma.. I'm not real sure how your Dr. will do yours,

but mine have

> always been the same.. The cut behind the ear and go in that way. I

don't

> really know how long it takes maybe an hr. or so. When you are done

your head my

> be wraped in lots of guaze to hold the bandage on your ear. Your

ear will be

> packed with guaze that you will have taken out when you go back for

your post

> op. visit. You will be able to change the guaze around your ear

after a few

> days, but will not be able to get that ear wet. The stiches should

be dissolving

> ones that will be on the inside of the ear. I didn't experiance

much pain, but

> there was some.. I hope this helps a little...Good luck to you!

>

> Chasity

>

[Guest guest]

Kazzy,

Thanks for responding...how many surgeries have you had for

cholesteatoma?

Greg

www.myspace.com/gledbetter

>

> Hi Greg

>

> I'm Kazzy, and am 44 yrs old from England, UK. I had adult-onset

cholesteatoma, so though I had the 'normal' childhood illness (to

include the occasional infection), I didn't have any real infections

as a child; as an adult, though, it's a totally different story - I

have had quite possibly hundreds of infections and perforations and

continue to do so to this day.

>

> I had a Modified Radical Mastoidectomy (CWD) to remove the tumour

in 1999; the operation took around 3-4 hours I believe. The surgeon

went in through the canal (I had only 6 external stitches) leaving me

with a widened ear opening which, though visible, is certainly not

off-putting in any way to me or those who matter to me. The story of

my cholesteatoma can be found on my website -

http://www.kazbat.co.uk - click on the link to 'Kazzy kant hear' and,

if you're interested in the Bone Anchored Hearing Aid I know wear as

a result of my related hearing loss, click on the link to 'Kazzy kan

hear' too.

>

> Many of the members of this wonderful group have told their stories

previously; have a look through the previous messages - they make for

interesting reading, especially if you wish to compare notes, so to

speak, and learn how different, whilst similar, cholesteatoma can be

in different patients.

>

> All the very best to you.

>

> Kazzy :-)

>

> http://www.kazbat.co.uk

>

> Deaf... but not dumb

>

> " Remember: It is not tragic to have a disability. Disability only

becomes a tragedy when society fails to provide the things one needs

to lead one's life. " (Anonymous)

>

>

>

>

>

> 34 year old male with Cholesteatoma from

Tennessee

>

>

> Hello!

>

> My name is Greg Ledbetter, from Knoxville, Tn. I was diagnosed

with

> this about two weeks ago. I'm presently on Vanco & Cefepime thru

IV

> pic line for 12 days.

>

> I'm having surgery on Oct. 25 at St. Hospital by Dr.

> Schwaber.

>

> What should I expect from the surgery?

>

> I've already, lost all hearing in my left ear. I had mastoid

surgery

> about 25 years ago and lost most of my hearing about 5 years ago.

> I've had chronic ear infections my whole life.

>

> Would like to speak with anyone who has had this surgery and

maybe

> anyone that might have used my Dr. above.

>

> Thanks,

> Greg Ledbetter

> 865-591-4802

> Gregledbet@...

>

[Guest guest]

Greg

I had my Modified Radical in 1979, in the time since I

have had zero comments about my ear canel being bigger

than the other. The difference is not noticable until

it's mentioned and then not enough to mention. Please

feel free to ask anything as we are the ones it ahs

happened to and know the outcomes. The outcomes can

vary from one to another so don't be alarmed....

tom hansen

--- Kazbat <kazbat@...> wrote:

> Hi Greg

>

> I'm Kazzy, and am 44 yrs old from England, UK. I

> had adult-onset cholesteatoma, so though I had the

> 'normal' childhood illness (to include the

> occasional infection), I didn't have any real

> infections as a child; as an adult, though, it's a

> totally different story - I have had quite possibly

> hundreds of infections and perforations and continue

> to do so to this day.

>

> I had a Modified Radical Mastoidectomy (CWD) to

> remove the tumour in 1999; the operation took around

> 3-4 hours I believe. The surgeon went in through

> the canal (I had only 6 external stitches) leaving

> me with a widened ear opening which, though visible,

> is certainly not off-putting in any way to me or

> those who matter to me. The story of my

> cholesteatoma can be found on my website -

> http://www.kazbat.co.uk - click on the link to

> 'Kazzy kant hear' and, if you're interested in the

> Bone Anchored Hearing Aid I know wear as a result of

> my related hearing loss, click on the link to 'Kazzy

> kan hear' too.

>

> Many of the members of this wonderful group have

> told their stories previously; have a look through

> the previous messages - they make for interesting

> reading, especially if you wish to compare notes, so

> to speak, and learn how different, whilst similar,

> cholesteatoma can be in different patients.

>

> All the very best to you.

>

> Kazzy :-)

>

> http://www.kazbat.co.uk

>

> Deaf... but not dumb

>

> " Remember: It is not tragic to have a disability.

> Disability only becomes a tragedy when society fails

> to provide the things one needs to lead one's life. "

> (Anonymous)

>

>

>

>

>

> 34 year old male with

> Cholesteatoma from Tennessee

>

>

> Hello!

>

> My name is Greg Ledbetter, from Knoxville, Tn. I

> was diagnosed with

> this about two weeks ago. I'm presently on Vanco &

> Cefepime thru IV

> pic line for 12 days.

>

> I'm having surgery on Oct. 25 at St.

> Hospital by Dr.

> Schwaber.

>

> What should I expect from the surgery?

>

> I've already, lost all hearing in my left ear. I

> had mastoid surgery

> about 25 years ago and lost most of my hearing

> about 5 years ago.

> I've had chronic ear infections my whole life.

>

> Would like to speak with anyone who has had this

> surgery and maybe

> anyone that might have used my Dr. above.

>

> Thanks,

> Greg Ledbetter

> 865-591-4802

> Gregledbet@...

>

>

>

>

__________________________________________________

[Guest guest]

Hi Greg

I've had just the one. I think I'm probably right when I say that most who have CWD (Canal Wall Down) tend to have that type of operation as their final surgery as there's a far higher rate of success as opposed to Canal Wall Up. It leaves a cavity within the ear and, as such, allows toilet suction by the ENT guys at the hospital, thus going some way to preventing a recurrence of the tumour.

Hope this helps.

Kazzy :-)

34 year old male with Cholesteatoma from Tennessee> > > Hello!> > My name is Greg Ledbetter, from Knoxville, Tn. I was diagnosed with > this about two weeks ago. I'm presently on Vanco & Cefepime thru IV > pic line for 12 days. > > I'm having surgery on Oct. 25 at St. Hospital by Dr. > Schwaber.> > What should I expect from the surgery?> > I've already, lost all hearing in my left ear. I had mastoid surgery > about 25 years ago and lost most of my hearing about 5 years ago. > I've had chronic ear infections my whole life.> > Would like to speak with anyone who has had this surgery and maybe > anyone that might have used my Dr. above.> > Thanks,> Greg Ledbetter> 865-591-4802> Gregledbet@...>

[Guest guest]

Hi Greg.. To Answer your question I'm not real sure why it keeps coming back. I've never asked. That will be something I ask once I can finaly get into a dr.. It maybe because I wear a hearing aid 24/7.. I know I'm suppose to take it out but because my hearing is so bad it freaks me out not being able to hear. You could get around your insurnace if you can get a dr. to refur you to a spec. That's what I had to do when I had insurance...

[Guest guest]

Good Luck ...I'm sure things will go fine!

[Guest guest]

Hi Greg, I'm going for my first surgery tomorrow at 7:30 a.m. It's supposed to take 3.5 hours. I'll let you know more once I am home and up to emailing. gledbetter01 <gledbetter01@...> wrote: Hello!My name is Greg Ledbetter, from Knoxville, Tn. I was diagnosed with this about two weeks ago. I'm presently on Vanco & Cefepime thru IV pic line for 12 days. I'm having surgery on Oct. 25 at St. Hospital

by Dr. Schwaber.What should I expect from the surgery?I've already, lost all hearing in my left ear. I had mastoid surgery about 25 years ago and lost most of my hearing about 5 years ago. I've had chronic ear infections my whole life.Would like to speak with anyone who has had this surgery and maybe anyone that might have used my Dr. above.Thanks,Greg Ledbetter865-591-4802Gregledbetaol"Wherever you go, there you are!" Wagemanngeowags@...

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[Guest guest]

Good luck ... hope you're soon back up and at 'em :-))))

Kazzy :-)

Re: 34 year old male with Cholesteatoma from Tennessee

Hi Greg,

I'm going for my first surgery tomorrow at 7:30 a.m. It's supposed to take 3.5 hours. I'll let you know more once I am home and up to emailing.

gledbetter01 <gledbetter01 > wrote:

Hello!My name is Greg Ledbetter, from Knoxville, Tn. I was diagnosed with this about two weeks ago. I'm presently on Vanco & Cefepime thru IV pic line for 12 days. I'm having surgery on Oct. 25 at St. Hospital by Dr. Schwaber.What should I expect from the surgery?I've already, lost all hearing in my left ear. I had mastoid surgery about 25 years ago and lost most of my hearing about 5 years ago. I've had chronic ear infections my whole life.Would like to speak with anyone who has had this surgery and maybe anyone that might have used my Dr. above.Thanks,Greg Ledbetter865-591-4802Gregledbetaol"Wherever you go, there you are!" Wagemanngeowags

Get your email and more, right on the new .com