Re: Middle Ear Cholesteatoma

[Guest guest]

I just had my surgery, from a pain perspective it isn't bad.

I can not say what will happen to me down the road. After researching this stuff and listening to folks on this list it seems as though ctoma comes back.

Anyway, good luck.

From: chelleclark64 <chelleclark64@...>Subject: Middle Ear Cholesteatomacholesteatoma Date: Sunday, June 12, 2011, 12:32 AM

Hi I'm new to the group. I have a recent diagnosis of middle ear cholesteatoma. I am 42 and have have a perfurated ear drum since I was 9 years old. I have a conductive hearing loss that I suffered about 5 years ago and recently began to feel pain in my neck and ear. Just this week after a CT scan I was told of the cholsteatoma and that I need to have surgery in 3 months. What I have read so far scares me. I am moving from the East Coast to the West in less than 30 days and I am looking for a neurotologist in California. I can not find anything online. Can someone help? Any advice? Does anyone have good news about this diagnosis post surgery? ------------------------------------

[Guest guest]

I'm in Oregon but I researched and researched until I found the best surgeon in

my area. Do you know if there are any universities close that's where I'd start.

Jenni

chelleclark64 <chelleclark64@...> wrote:

>Hi I'm new to the group. I have a recent diagnosis of middle ear

cholesteatoma. I am 42 and have have a perfurated ear drum since I was 9 years

old. I have a conductive hearing loss that I suffered about 5 years ago and

recently began to feel pain in my neck and ear. Just this week after a CT scan

I was told of the cholsteatoma and that I need to have surgery in 3 months. What

I have read so far scares me. I am moving from the East Coast to the West in

less than 30 days and I am looking for a neurotologist in California. I can not

find anything online. Can someone help? Any advice? Does anyone have good

news about this diagnosis post surgery?

>

[Guest guest]

Stay optimistic, there are many cases out there that do not end up horrible ) I am one of them...I stay connected to the group because it is can be so scary and it helps to better understand the condition. Everyone's case is different and it is something that will be a part of you from now on. My situation is similiar to chelleclark64's. I had a perforated eardrum ( presumably from tubes when I was young ) I had always complained of feeling dizzy, fullness in my ear etc...Doctor after doctor, I was diagnosed with everything under the sun... Stress, MVP, hypoglecemia. ( I even had docs rinsing the ear with warm water because he seen some white tissue in there.. DUH ) When I was 26 I stated working as an office manager for an otolaryngologist and I felt faint while working...

he took one look in my ear and scheduled surgery within 2 days. After 4 hours of surgery I had the large cholesteatoma removed and it had eroded all of the bones in my ear.. The recovery was not to bad. Maybe a week or two at the most. My one word of advise when dealing with this for the first time, I moved and stopped working for this ENT, he warned me - Come back after 1 year because we will want to do explority surgery again to make sure you're all clear. Sadly, I did not listen. I moved and started searching for other docs, 2 1/2 years later I was back to him with a bad infection that was not properly treated by my other doctors. The chol was back full force and the 2nd surgery was a Closed Wall down and an eardrum rebuild to hopefully prevent a recurrence ( that was in 2004 ) so far so good ) But the recovery the 2nd time was not to fun.. AND I can never get water in this ear again ( which makes living in South Forida a PAIN!! ) I made

a bad choice and did not do that follow up within the year like I should have!!! If I would go back in time I would have skipped into surgery within the 1 year mark as suggested. Now, I have a standing appt with my ENT every 6 months for a cleaning and just standard follow up. Another thing I was skeptic of and now I highly recommend doing is the vestibular exercises because I do have a tendacy to get dizzy or feel "off balance" and they have helped me significantly! My hearing ( I am so happy to say ) is fantastic considering what the ear has been through. I know I am a special case when it comes to this part as each time my hearing is tested the audiologist will mention that... I wish that for everyone on this group as well.

Stay strong and GOOD LUCK with your surgery!! Please get the 2nd check!!!!

From: Bradford Burt <bradford_burt08@...>cholesteatoma Sent: Sun, June 12, 2011 7:30:56 AMSubject: Re: Middle Ear Cholesteatoma

I just had my surgery, from a pain perspective it isn't bad.

I can not say what will happen to me down the road. After researching this stuff and listening to folks on this list it seems as though ctoma comes back.

Anyway, good luck.

From: chelleclark64 <chelleclark64@...>Subject: Middle Ear Cholesteatomacholesteatoma Date: Sunday, June 12, 2011, 12:32 AM

Hi I'm new to the group. I have a recent diagnosis of middle ear cholesteatoma. I am 42 and have have a perfurated ear drum since I was 9 years old. I have a conductive hearing loss that I suffered about 5 years ago and recently began to feel pain in my neck and ear. Just this week after a CT scan I was told of the cholsteatoma and that I need to have surgery in 3 months. What I have read so far scares me. I am moving from the East Coast to the West in less than 30 days and I am looking for a neurotologist in California. I can not find anything online. Can someone help? Any advice? Does anyone have good news about this diagnosis post surgery? ------------------------------------