Sorry, just found this site! Hope all went well with surgery! Yikes! I know it's scary, but I was diagnosed when I was about 10 or so and I'm not 24 dealing with the opposite ear. Now I know it's TERRIFYING to hear those words come out of your doctors mouth about your child. But, it can be healed fairly quickly if given the right doctor. Honestly my case was different since my eustachian tubes weren't developed completely when I was born. This caused the drainage to not drain and fluid buildup leading to tumors. Hopefully your daughter's surgery went well and expect her to complain about having a numb feeling behind her ear from the incision for quite a while. I had my last surgery in May and it's still numb behind it. There will be packing in the ear for several days, as well as, a bandage/helmet looking thing surrounding the ear. The doctor put the bandage on too tight for me both recent times and we had to put gauze where it was rubbing my skin raw. If that's the case, you may want to do so as well. Kids tend to bounce back to normal quicker, but I know I remained out of school for a whole school week to recover. You may want to do so too. My doctor told me I could go back within a few days, but it was smart to stay home a whole week. If there are any signs of an infection or anything after surgery like a week or so after even, make sure you contact your doctor. There is a higher chance of the tumors reoccurring if the infections aren't treated immediately once you've had the surgery I believe. Plus, the pain I'm sure is horrible for your kiddo. Any additional questions, please let me know. I've had ALL possibilities and can help in any way I can. My parents felt and still feel tlhe same way you are feeling. Good luck!

That's such an amazing story ,and I have many of the same experiences! That's truly inspirational that you've endured that much discomfort and are still positive. I must say I haven't been as fortunate, but I've recently had the canal wall down surgery as the last resort in my right ear and have had no issues with that ear. I go in next month for the same procedure on my left ear in hopes of full recovery. I was born 3 months premature so my eustachian tubes weren't developed properly, which is causing the tumors and infections, as you know. Now, I have a hearing aid in one ear and possibly another in the other ear, which was horrifying to discover at first. Since I've had the hearing aid, I realize it's not as serious or embarrassing as it may seem.

I wanted to write my complications with my experiences with cholesteatoma to help clear up or answer any questions people have regarding this tumor.

At birth I was 3 months premature with my eustachian tubes in my ears not forming properly apparently. This was not discovered until I was in 5th grade and was finally diagnosed with Cholesteatoma through a CT scan.

Growing up I had some of the most HORRID ear infections in my right ear. I mean the type that had me curled up in a ball sobbing from the pain and burning. Doctor after doctor kept giving excuses, "Oh, it's swimmers ear..", "Oh, it's because your parents smoke...", "Oh, it's just an ear infection.." Ok, after hearing these excuses and having infections so bad my ear drum ruptured, I'm afraid it's not because my parents smoke, it's far more severe than swimmers ear, and I'm sorry, but it's way more intense than JUST an ear infection. I used to get so irritated when teachers would send me back to the classroom and say it's just an ear infection. Even if it was JUST an ear infection, proper medical procedures would have made me feel better. Ear infections hurt, they cause discomfort, they cause a lack of attention span, and they surely cause complications to hearing.

Finally in 5th grade, I had a doctor that properly diagnosed these ear infections as the formation of Cholesteatoma. The day of surgery, they prepped me saying basically I was going in to have an incision behind my ear, in which they were going to remove the tumors. They removed the tumors and I thought I was cleared from the tumors reoccurring. That was not the case, I was told the tumors spread rather quickly again and I'd have to have another surgery to remove the tumors again. This time going in the tumors completely surrounded the facial nerve, and had a little damage to the bone protecting the brain but everything was gone. You must remember these tumors are microscopic, so when the doctors are scraping the tumors out it's causing swelling which makes it harder to actually see the tumors and completely clear them. AFter a few failed surgeries, my ENT referred me to a higher up name saying this was too severe of a case for him. The next ENT I went to in the Kansas City area was ok during the explanation, but wasn't so great in surgery since it failed amost immediately. Since this doctor failed, we went to another recommended doctor, who did an ok job for the severity, and was trying to figure out why the tumors kept reoccurring. He removed my tonsils and adenoids, which didn't work, but helps with not getting colds which can lead to fluid which leads to tumors reoccurring if not drained quickly. He also did a reconstructive surgery again to see if using a skin graft would help the bones orchestrate sound waves, which worked temporarily.Having this same thing done in 5th grade but with prostetic bones, we came ot the realization my ear doesn't like foreign objects in the ear to repair hearing. After a few surgeries removing the tumors, he referred me to a neurosurgeon at KU Med Center, which has resolved a lot of discomfort. I had a canal wall down surgery, which means I have everything cleared from my ear
cavity including the bones and such. He widened the ear canal to enable surgeies to clear out infections and vaccuum the scar tissue, which  has put a hinderance on swimming. I can't ever go snorkling/deep sea diving, nor can I go swimming until I get custom made ear plugs, which are pricey. This is a last resort procedure, which isn't common since most individuals grow out of cholesteatoma growths at childhood. With this last surgery done on both my right and left ear, there was major damage done to the facial nerve causing possible damage in the future if the tumors reoccurr, but I've been tumor free for two years in my right ear. WOOHOO!

Whever I found out I had to have a hearing aid, I was completely in denial. I thought there surely had to be another option. Looking at my past history and NUMEROUS surgeries I've had, I realized it wasn't the end of the world. I have longer hair to hide it, and I should be happy I even have the option for a hearing aid with all the damage done to failed surgeries. Looking back now, I 've had the hearing aid a year and it's growing as part of me. I have a greater appreciation for hearing, and people do question it. I've had people judge me, including a lady at the gas station referring to me as "dirty, and claiming I don't take care of myself since I have this hearing aid" I kindly reminded her that I work in child life helping kids understand journeys and experiences like mine in the medical field, so if getting a degree and suffering from this obstacle in life means I'm dirty, then perhsaps she needed to re-evaluate her life. I'm a very presentable person, and nobody can bring me down now that I've accepted that cholesteatoma will always be part of my life journey and that's ok.

If anyone has any questions, feel free to respond to this post. I've literally had more surgeries than I can count on both ears. The surgeries have ranged from exploratory to canal wall down which is the beginning to last resorts with Cholesteatoma.

During my first ear surgery, they discovered the tumors surrounded my tastebud nerves and facial nerves in my right ear. With the severity of the tumors, they snapped my tastebud nerve during surgery, which lead me to not having taste on one side of my mouth. In your case, I believe it's possible temporary loss. Perhaps the tumors are causing swelling which is putting pressure on your nerves. Once you have the tumors removed, you may possible gain back your taste sensation. I wouldn't lose hope, because surgery does wonders with these tumors. I was diagnosed with these tumors about 10 years ago, and have had SEVERAL surgeries on my right and am about to have my second surgery on my left to remove the tumors. These tumors have resulted in a hearing aid, as well. so, even if the surgery doesn't go as planned, hearing aid's are possibly an option to enable your hearing. I realize it's not the same,  but I'm a 24 year old female and thought it was the end of the world getting one this year. It kind of grows on you, and it's amazing to at least be able to put that on as a back up whenever I'm at an important event, and whenever you don't want to hear something, just remove the hearing aid  Good luck with everything! Any other questions, feel free to ask!

I've had SEVERAL surgeries removing cholesteatoma, in which each have lasted various times. It honestly depends on how much of the tumors were shown on the CT scan. At times, the CT scan only pics up one or two cysts, and when  they go into surgery, sometimes they discover more towards the inner ear or even surrounding the nerves. I know my first surgery lasted 3.5 hours, and the recovery was 1 full week of down time. Mind you I was younger and could bounce back easier. I wasn't completely healed for a year at least but it didn't bother my everyday life. I know they highly recommend no heavy lifting and such for at least a week afterwards for the stitches to remain intact. My last surgery was a canal wall down, which had 1 1/2 week recovery, because of the extent of the surgery, and the severity of the damage, which I'm sure is not your daughter's case. I'm not sure about the breastfeeding issue.. I wish her luck during the procedure and years to come with the cholesteatoma hopefully not reoccuring!

My daughter, 29, who is also 7 months pregnant has cholesteatoma.  The last appt. with her ENT who vaccumed her left ear, caused the left side of her tongue numb.  Surgery is to be scheduled after delivery of her baby.  How long is the surgery?  How long is recovery? Will she be able to nurse her baby?
Thank you,
vogt1122

1)  Look for a Otologist, they specialize in ears only
2) im my opinion after 4 surgerys, i'd rather have them go behind the ear to open me up.  i had a very bad experience when they went through the canal. if i recall its called post aricular.
thats pretty much it in a nut shell.  if you have more questions for me contactc me via email.

i have had cholesteatoma for years and recently have been told that I need to have it removed. Having not been through this before I would appreciate any advice on how to find a good qualified surgeon and what questions to ask them. I live in southern Minnesota so if anyone knows of a good Dr I would love a referral

I would also love to have a list of questions from people who have been throught it and know what to ask. So bring em on, I need all the help I can get.....

MBSweet

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My daughter just got diagnosed with a cholesteatoma. She has had ear problems all her life and 2 years ago had tubes put in. In August her tube fell out and shortly after started an infection where the tube had been. After months of trying to make the infection go away and weekly doctors appointments she finally got referred to Children's Hospital. After 4 1/2 months of a really smelly infected ear she has a diagnoses. Her CT scan shows it growing into the bones. She is scheduled for surgery January 24th. Can anyone tell me what to expect. They said it will be a 3-4 hour surgery. I am a little freaked out so if someone has experienced it and can tell me what to expect for her. We meet with the doctor for her pre-op appointment next week.
Thanks for any help you can give me!

Denise