Re: SURGERY -Dr wants to do a Canal Wall Down procedure!

[Guest guest]

Hi ,I had surgery after 16 yrs. 3 actually. One being a CWD in September 2010. I haven't had many issues. I just had surgery again in April this year to remove a new growth and I didn't have any pain post op. I actually called and asked the surgeon if he did anything post op because I couldn't feel pain like I had in previous surgeries. I am not a big fan of water I do enjoy boating so having this procedure for me over having an ear that was not safe was a no brainer for me. I do keep my ear dry and people who look at my ear say they can't really notice anything different unless they look at my left side then my right side to compare. I haven't noticed many changes other than keeping it dry. Cleanings are better although the cold air does make me dizzy sometimes but nothing like before which is strange but I won't question it. When is your surgery? Taking the canal wall down will also help keep ctoma's from hiding back behind the wall (something mine did) so your chances of recurrance are even lower.

JenniOn Thu, Jun 9, 2011 at 2:53 PM, <jules-07@...> wrote:

 

Hello group.

 

I had my first CWU procedure for cholesteatoma in 1999.  The ear surgeon said it was large and damaged one of the hearing bones.  The surgery went well.  While I was recovering, I caught a bad infection in the ear (I caught a bad cold that was going around) that would not heal and needed a second op (CWU) 6 months later.  It's been a tricky, long road with my poor left ear.  The doctor said my ear canal is widening on its own but it's not being controlled.  I'm 44 years old now.  The ear dr. sent me for a ct scan a few weeks ago and he says the cholesteatoma is back!  He wants to do a Canal Wall Down and I'm pretty scared.  He said my eustacian tube is not working.  I've had the same ear doctor all along.  I live in N.Y. and had the surgeries in Manhattan.  The ear doctor is head of many departments, is qualified (accepts my insurance) and my ear looks very normal on the

outside...He said the CWD is actually an easier surgery.  This doctor told me years ago that I'm his one " problem patient. "   I guess all his other patients recover fully with no problems??  I felt so awful when he said that. I'm a respectful, quiet person who keeps her appointments. I never needed any other surgeries in my life and like the rest of us, never, ever, expected to grow an invasive ear tumor that I've never heard of before.

 

I hate having to go through all this again 11 years later....He said the outcome would be similiar to what I'm doing now - office visits every 6 months, keep water out, etc.  Any advice?  Thank you - .

[Guest guest]

Hi Jenni

what does it mean canal wall down exactly? i am new to c.toma.

ruth

From: Jenni <moonshadow2447@...>cholesteatoma Sent: Fri, June 10, 2011 1:41:36 AMSubject: Re: SURGERY -Dr wants to do a Canal Wall Down procedure!

Hi ,

I had surgery after 16 yrs. 3 actually. One being a CWD in September 2010. I haven't had many issues. I just had surgery again in April this year to remove a new growth and I didn't have any pain post op. I actually called and asked the surgeon if he did anything post op because I couldn't feel pain like I had in previous surgeries. I am not a big fan of water I do enjoy boating so having this procedure for me over having an ear that was not safe was a no brainer for me. I do keep my ear dry and people who look at my ear say they can't really notice anything different unless they look at my left side then my right side to compare. I haven't noticed many changes other than keeping it dry. Cleanings are better although the cold air does make me dizzy sometimes but nothing like before which is strange but I won't question it. When is your surgery? Taking the canal wall down will also help keep ctoma's from hiding back behind the wall (something mine

did) so your chances of recurrance are even lower.

Jenni

On Thu, Jun 9, 2011 at 2:53 PM, <jules-07@...> wrote:

Hello group.

I had my first CWU procedure for cholesteatoma in 1999. The ear surgeon said it was large and damaged one of the hearing bones. The surgery went well. While I was recovering, I caught a bad infection in the ear (I caught a bad cold that was going around) that would not heal and needed a second op (CWU) 6 months later. It's been a tricky, long road with my poor left ear. The doctor said my ear canal is widening on its own but it's not being controlled. I'm 44 years old now. The ear dr. sent me for a ct scan a few weeks ago and he says the cholesteatoma is back! He wants to do a Canal Wall Down and I'm pretty scared. He said my eustacian tube is not working. I've had the same ear doctor all along. I live in N.Y. and had the surgeries in Manhattan. The ear doctor is head of many departments, is qualified (accepts my insurance) and my ear looks very normal on the

outside...He said the CWD is actually an easier surgery. This doctor told me years ago that I'm his one "problem patient." I guess all his other patients recover fully with no problems?? I felt so awful when he said that. I'm a respectful, quiet person who keeps her appointments. I never needed any other surgeries in my life and like the rest of us, never, ever, expected to grow an invasive ear tumor that I've never heard of before.

I hate having to go through all this again 11 years later....He said the outcome would be similiar to what I'm doing now - office visits every 6 months, keep water out, etc. Any advice? Thank you - .

[Guest guest]

Hi Ruth when the canal wall is taken down it is inside the ear and basically it

separates the ear so removing that wall just makes it easier to see new growths

and some ctomas hide behind that wall and the inner ear. So the canal wall

basically separates the ear and when I take it down it's just one open cavity

rather than 2. Jenni

Ruth Silver <amitai7129@...> wrote:

>Hi Jenni

>

>what does it mean canal wall down exactly? i am new to c.toma.

>ruth

>

>

>

>

>________________________________

>From: Jenni <moonshadow2447@...>

>cholesteatoma

>Sent: Fri, June 10, 2011 1:41:36 AM

>Subject: Re: SURGERY -Dr wants to do a Canal Wall Down

>procedure!

>

> 

>Hi ,

>

>I had surgery after 16 yrs. 3 actually. One being a CWD in September 2010. I

>haven't had many issues. I just had surgery again in April this year to remove

a

>new growth and I didn't have any pain post op. I actually called and asked the

>surgeon if he did anything post op because I couldn't feel pain like I had in

>previous surgeries. I am not a big fan of water I do enjoy boating so having

>this procedure for me over having an ear that was not safe was a no brainer for

>me. I do keep my ear dry and people who look at my ear say they can't really

>notice anything different unless they look at my left side then my right side

to

>compare. I haven't noticed many changes other than keeping it dry. Cleanings

are

>better although the cold air does make me dizzy sometimes but nothing like

>before which is strange but I won't question it. When is your surgery? Taking

>the canal wall down will also help keep ctoma's from hiding back behind the

wall

>(something mine did) so your chances of recurrance are even lower.

>

>Jenni

>

>

>On Thu, Jun 9, 2011 at 2:53 PM, <jules-07@...> wrote:

>

> 

>>Hello group.

>>

>>I had my first CWU procedure for cholesteatoma in 1999.  The ear surgeon

said it

>>was large and damaged one of the hearing bones.  The surgery went well. 

While I

>>was recovering, I caught a bad infection in the ear (I caught a bad cold that

>>was going around) that would not heal and needed a second op (CWU) 6 months

>>later.  It's been a tricky, long road with my poor left ear.  The doctor

said my

>>ear canal is widening on its own but it's not being controlled.  I'm 44 years

>>old now.  The ear dr. sent me for a ct scan a few weeks ago and he says the

>>cholesteatoma is back!  He wants to do a Canal Wall Down and I'm pretty

scared. 

>>He said my eustacian tube is not working.  I've had the same ear doctor all

>>along.  I live in N.Y. and had the surgeries in Manhattan.  The ear doctor

is

>>head of many departments, is qualified (accepts my insurance) and my ear

looks

>>very normal on the outside...He said the CWD is actually an easier surgery. 

>>This doctor told me years ago that I'm his one " problem patient. "   I guess

all

>>his other patients recover fully with no problems??  I felt so awful when he

>>said that. I'm a respectful, quiet person who keeps her appointments. I

never

>>needed any other surgeries in my life and like the rest of us, never, ever,

>>expected to grow an invasive ear tumor that I've never heard of before.

>>

>>I hate having to go through all this again 11 years later....He said the

outcome

>>would be similiar to what I'm doing now - office visits every 6 months, keep

>>water out, etc.  Any advice?  Thank you - .

>