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 on: August 21, 2013, 01:14:08 PM 
Started by STmomma - Last post by STmomma
We just found out today that our eight year old son has Cholesteatoma in his one ear.  They noticed something odd in December, but fluid blocked the ability to see it.  Today at the routine follow-up confirmed the Cholesteatoma.  We never heard of this before and are besides ourselves with concern and worry.  Has anyone seen Dr. Lee at Mass Eye and Ear?  I see that Dr. McKenna is highly recommended, but I don't know if he does pediatric surgeries.
What can we expect from the surgery?

 on: August 15, 2013, 08:45:54 AM 
Started by optinel - Last post by Cholestear
Dr. Thomas Haberkamp is wonderful - and is at the Cleveland Clinic in Cleveland, OH - and I've heard that Dr. Arun Gadre is great as well - in Louisville, KY.  Both are specialists in cholesteatoma and are otologists/neurotologists. 

 on: August 13, 2013, 03:14:15 PM 
Started by chipke - Last post by chipke
Does anyone know which surgeon in Belgium is most experiences with cholesteatoma ?

I read about the endoscopic technique. Anyone know any ENT surgeons in Europe, Belgium that use this technique ?

thank you !!!

 on: August 09, 2013, 12:04:45 PM 
Started by optinel - Last post by optinel
In need of GOOD surgeon--Any advice=> PLEASE

 on: June 26, 2013, 08:33:40 AM 
Started by andrew48 - Last post by Cholestear
Update regarding Dr. Tarabichi.  In addition to Dubai, Dr. Tarabichi also practices in Wisconsin in the US -  It is a much less invasive procedure than the traditional canal wall up/canal wall down.

 on: June 26, 2013, 07:10:40 AM 
Started by breadmom - Last post by Cholestear
I just found that Dr. Tylor now practices in Fremont, CA - (San Francisco Bay Area).  Just wanted to put that on here in case someone is trying to find her.

 on: June 17, 2013, 08:19:13 PM 
Started by dameyer - Last post by dameyer
I am a 50 year old female.
I had a cholestiatoma surgery one week ago and am wondering if anyone else has experienced the same things I am.
Mine was not as bad as some of the others I have seen posted on here.
I did loose 2 of the 3 bones.
I am having sharp pains around and in my ear. I am numb all around the ear and the ear itself.
Not too bad as far as dizziness goes.
I feel like my ear is full, clogged. I know there is packing in there but how long for this to go away.

The funny thing is my poor daughter had a congenital cholestiatoma which we found when she was 6.
She has had 3 surgeries and goes every 5 months for a clean out. She cannot remember about recovery.
I think she had blocked it out.

 on: June 15, 2013, 05:25:54 PM 
Started by westy674 - Last post by westy674
Hi mate, good to hear you're doing alright, I'm at week 2 of recovery now and getting better every day. I had my surgery done at St. Vincent's Public in Sydney and had a good experience there. The vertigo has definitely been hampering me but I'm getting better all the time.
Like I said, I was meant to come out of surgery stone deaf so any hearing I have is a blessing. I'm just thankful to be here, happy to be alive. Smiley

 on: June 14, 2013, 01:18:16 AM 
Started by westy674 - Last post by Vic1991
I had a Cmota removed nearly 2 years ago and have been struggling dealing with it since so thought I would have a look on the internet today and see if theyre were any others that have been through similiar.
I noticed your story here and sounds very similiar to what I went through.
How are you recovering now after surgery?
Good to here you are no up and about and managing to walk! the first week or so afternoon the operation is the worse it is, things get better! Smiley
What hospital was it you had your operation at?
I discovered I had a cmota around 2 years ago now when I was 20 when I was living in Sydney. I had severe ear pain and smelly discharge and blood coming out from my ear, along with hearing loss and a drooping face! went to the doctors several times who just gave me ear drops and antibiotics which never worked! finally I was referred to a specialist who confirmed I had a cmota and sent me for CT scan the next day the hospital called me and told me to go straight into the hospital as it was worse than what they thought and spread to my brain.
I got the surgery not long after and seemed to have the same side affects as you after the operation! woke up feeling sick, hearing loss, and bad vertigo, sore head, and in pain. I couldn't stand up myself for the first few days and couldn't eat or drink and was on a drip and constant sickness! they gave me pills to stop the sickness but nothing was working. Finally I managed to walk myself and was pacing up and down the hospital corridors (probably not walking straight at all with the vertigo) but was just happy and excited to be able to walk myself and shower and go to the toilet myself! I got out of hospital about 6 days after the operation and then started to feel much better (even managed to go for a pizza hut the same night).  The first week or two is defo the worse! things get better!.
All my check ups went well, I suffer from some hearing loss, bad tinnitus, occasional vertigo, still get ear discharge etc but the Surgeon said this was the best possible outcome and I am very lucky to be alive considering! and it was the first time he had ever seen it so bad or done this operation.
I got for check ups every 6 months now to ensure it doesn't come back or if it does it is found straight away unlike last time.
I find my symptoms get worse when I have a cold etc and run down, and my tinnitus is at its worse when I am stressed or tired.
I hope you are feeling better soon! it does get easier! took my about a month to recover properly from surgery after a month I was back at work and living a normal life!  Grin

 on: June 12, 2013, 01:44:34 AM 
Started by westy674 - Last post by westy674
I'll keep it simple. I know I found this website through trawling the web and noticed not a great number of "detailed" stories (which were what I really wanted to read) so I'm making this post for newcomers trying to find less common information about cholesteatoma, the surgery, and recovery. First about myself: a 21 y/o Australian male, presenting with symptoms for the past 2-3 years that have been gradually worsening. A year ago I saw a specialist who diagnosed me and recommended I see a surgeon specialist who confirmed the condition and put me on the surgery waiting list. I waited about 6 months before being put on the list to admittance.

THE SURGERY: Was originally intended to be a left maistoidectomy. "It doesn't look that bad," said Dr. Rainger, "I expect a good outcome though we have to anticipate slight to moderate hearing loss." The two lead surgeons on my team were Dr. Natalie Rainger and Dr. Nigel Biggs, both based in Sydney, and both of whom I would highly recommend. Dr. Rainger was very calm, professional, and caring, and really made me feel comfortable. As I lay getting prodded with canulas in the pre-op room she said the operation should last around 3-5 hours. They said "We're going to give you the funny gas" and that's all I remember.

Day 0: Woke up in a dark room with a head that felt two sizes too big for my body. My limbs felt like jelly. The nurse told me it was 10:30pm and that I had been under for over seven hours. My head was spinning every time I opened my eyes, so I tried to sleep but couldn't get a wink for the next 48 hours. Those two days were the worst. I didn't drink or eat anything for 48 hours, spent most of the night and day vomiting, getting prodded with intra-muscular injections, steroids, downing pills and p*ssing into a bottle. Felt like absolute death.

When morning came after the night of my surgery the four surgeons appeared in my ward and had a grim conversation with me. Dr. Biggs said it was "the worst I have ever seen in 20 years" and that the 'toma was very large and invading all the important parts of the INNER ear like the cochlea and the "labyrinth of hearing". They had to replace my ear drum, conduct a canalplasty, partially excise the labyrinth, snip the nerve that gives taste to the left side of my mouth, and replace one of the bones of hearing. Despite all this bad news I was kind of confused because I could hear quite well. I could locate sound easily in the ward.

I could pinpoint where conversations were taking place across the room, hear them clearly, I could hear whispers, I could hear the air conditioning, but it was all muffled under a pack of antibiotic dressings stuffed in my ear canal. I did notice SOME white noise/tinnitus which was perhaps double what I had before I entered surgery, but not nearly as bad as imagined it to be. Dr. Rainger explained that they expected me to be stone deaf in that ear and that any hearing I have is a bonus, so they say I am doing extremely well all things considered.

The damage to the labyrinth and taste nerve is expected to heal. With the labyrinth damaged I simply couldn't walk for two to three days, it was like being on a ship in a stormy sea. When I sneeze my world spins and I feel like I've fallen over. Coughing and laughing also aggravates it. My balance gets better every day however.

Day 3-4: Was moved to a better ward with a dedicated nurse. Started walking. Started eating. They apply an additional bandage/piece of gauze to the outside of your ear to catch blood oozing out, and there is a lot of it, though to my surprise it didn't have that "cholesteatoma" smell that I was used to. I usually wake up needing to replace the cotton ball/gauze I applied the night before. After a week I was still getting the blood, but no pain. Still couldn't walk much further than to the bathroom and back.

Day 5-7: Starting to feel "normal" again. Eased down on nausea/steroid medication. Normal diet, though lots of stuff tastes like either blood, milk, or ice. Starting to feel some strange sensations around the ear from time to time, like a "tearing" sensation, as if the wound is opening, but there have been no complications. Also noticed complete numbness in that ear which may or may not improve. Dizziness/vertigo getting slightly better every day, training to walk up and down stairs again. Little to no pain around the surgery site. Dr. Rainger is surprised and impressed at how well I am progressing all things considered.

Day 8: Taken off steroids. Discharged with a bunch of nausea drugs + antibiotics. More strange feelings around the ear. Walking a couple of ks a day now, though the vertigo is still strong. Don't need any help getting dressed or showering. Blood discharge still frequent. Checkup in 3 weeks to assess recovery. Now that I am well on the road to recovery I am starting to assess my hearing, comparing it against what it was like before. In a normal sized room with a few occupants I can hear and understand everyone clearly. In crowds, I can hear fine, but lots of loud noises can disorientate and confuse me. I expect this also has something to do with the damaged labyrinth but I will only know when the dressings are changed and I get to hear clearly for the first time.

Day 12-13: Noticeable improvement in balance and reduction of vertigo/dizziness. I can walk at a normal pace without looking like a drunk. Totally independent. The improvement has been great for morale and I'm not experiencing any real nausea (except after taking antibiotics). Give it a week and I may even be able to run or jog safely. There's still the annoying problem of my taste, which hasn't improved on the left side of my tongue, but I am hopeful. Still have blood discharge but it doesn't smell and only comes in small amounts.

Day 17-18: Vertigo is almost gone. Still a little unsteady on my feet. Went for a motorcycle ride for the first time since surgery and was able to ride safely, though it was uncomfortable getting the helmet on and when I took it off I had a severe dizziness spell, probably due to the pressure on my head. I'll probably leave it for a while and try again in a couple of weeks, don't want to get someone killed if I sneeze and trip out during a ride. Still have blood discharge. Dressing has come off, leaving a very thin, hardly noticeable scar. No real pain. Getting the packing changed in about 2 weeks so will probably update then.

Day 28 (?): Dressings changed + check up. Excellent recovery so the doctor says. Free to exercise and do whatever I want except get the ear wet. Felt a little weird when he dug out the crusty bandages from my ear but otherwise not painful and over in a few minutes. Dressings to be changed every two weeks. He says there's lots of exposed bone inside the maistoid cavity that needs to be protected by the antibiotics the bandages are soaked in. If I don't get them changed frequently the ear will still heal but might remain a "wet ear" as opposed to a "dry ear" as the objective is. Got to hear for the first time as well: for someone who was meant to be deaf Im doing very well. Sounded fantastic. Everything was so clear and crisp, if only for a minute. No real change in balance quality: I can walk/run long distances and experience a bit of a drunken gait every now and then. Recovery in that regard has plateaued but is expected to improve the more I walk over time.
-To be updated as condition changes.

Day 50+: Dressings have been changed twice now. I am 100% normal again. I only experience dizziness when its pitch black and I'm on an uneven surface, but even then I hardly notice it. The dressings have been replaced with a gel antibiotic that will be replaced tomorrow, and hopefully they will simply leave the ear alone from then onwards. This will mark about 12 weeks of recovery and I am feeling great.
I also should note that when my dressings were changed my hearing was FANTASTIC. Even better than before surgery! Which is nothing short of a miracle considering I have a new prosthetic bone, new eardrum, and damage to the vestibular labyrinth! Goes to show all of you coping with this terrible disease there IS hope and no matter how bad it is it will probably work out okay. Just keep your head high and trust your doctor. I'll update this again in the next couple of days if they leave my ear open.

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