Re:The doctors are telling me a new surgery is risky!

[Guest guest]

In my experience I can totally relate to what you say about knowing when you have an ear infection. I have had 8 cholesteatoma surgeries, but they were during my 20s, and I am now 42. I always knew when the pain was “normal” (for me) or

when I had an ear infection. Sometimes my husband would have to get a little angry with the doctors on call when I would need something stronger for pain medication and we would call the office after hours. I only wanted something to tie me over for the rest

of the night, but sometimes the doctors would act as though I was exaggerating and tell me to take a normal aspirin. HA.

What eventually happened was I found a doctor that really cared and was willing to work with me to make these awful situations a little easier. He trusted me and I trusted him in return. While he is no longer my doctor, he instilled in

me that I can continue to look for an ear doctor that “clicks” with me and makes me feel safe. I had to try a few more but am happy with my current doctor as well. I figure if I am going to live with this disease and the after effects for the rest of my life,

I’m worth it to feel comfortable with my doctor, even if I had to try a few to find the right one.

Good luck to you! If you’d ever like to read more about my story, visit lisaceardisease.blogspot.com

Christenson

Senior Communications Manager

American Dairy Queen Corp.

952/ 830-0206

lisa.christenson@...

Visit our

DQ blog at

blog.dairyqueen.com!

IDQ Companies

[Guest guest]

Hi ,

I had my first cholesteatoma surgery two years ago at 42 yrs old and six months ago I had my second look surgery - for the past week or two I have had an earache in that ear (no drainage, etc.) - I have been contemplating about going to the doctor but what can they really do with an earache? I am guessing I probably have fluid on my ear - tonight I may try a benadryl and see if it helps any. Any suggestions?

From: "Christenson, " <lisa.christenson@...>"cholesteatoma " <cholesteatoma >Sent: Thu, May 27, 2010 8:24:37 AMSubject: Re:The doctors are telling me a new surgery is risky!

In my experience I can totally relate to what you say about knowing when you have an ear infection. I have had 8 cholesteatoma surgeries, but they were during my 20s, and I am now 42. I always knew when the pain was “normal†(for me) or when I had an ear infection. Sometimes my husband would have to get a little angry with the doctors on call when I would need something stronger for pain medication and we would call the office after hours. I only wanted something to tie me over for the rest of the night, but sometimes the doctors would act as though I was exaggerating and tell me to take a normal aspirin. HA.

What eventually happened was I found a doctor that really cared and was willing to work with me to make these awful situations a little easier. He trusted me and I trusted him in return. While he is no longer my doctor, he instilled in me that I can continue to look for an ear doctor that “clicks†with me and makes me feel safe. I had to try a few more but am happy with my current doctor as well. I figure if I am going to live with this disease and the after effects for the rest of my life, I’m worth it to feel comfortable with my doctor, even if I had to try a few to find the right one.

Good luck to you! If you’d ever like to read more about my story, visit lisaceardisease. blogspot. com

Christenson

Senior Communications Manager

American Dairy Queen Corp.

952/ 830-0206

lisa.christenson@ idq.com

Visit our DQ blog at blog.dairyqueen. com!

IDQ Companies

[Guest guest]

Hi ,

Thank you for sharing your experience.

It is too bad not all doctors acknowledge the patients experience with its own

body. You should think we are the best ones to feel the pain! I will be seeing a

new hospital and doctor. Hopefully sometime soon. My family doctor understands

my pain and I am no starting to use more serious pain medication (Buprenorphine

transdermal patches). I just can´t stand the pain any longer. I don´t know if

there is a new cholesteatom in my ear, but there definitely must be some kind of

infection.