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 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.

 on: June 09, 2013, 08:40:04 PM 
Started by saveme - Last post by Mike in VT
Dr. Michael McKenna, Massachusetts Eye and Ear.
Dr. Mark Levenson, Saratoga Springs NY.
two of the best of the best.
this is the most i can tell you.
Dr. Levenson did mine 60 days ago. I'm still healing of course but i can hear pretty well.
I'm 52 and had this thing for quite a while.
Both Doctors and their teams see and operate on many youngsters.
good luck.
and come back and tell us where things are at.

 on: June 09, 2013, 08:19:29 PM 
Started by OperatedMale - Last post by Mike in VT
Dr. Mark Levenson, Saratoga Springs,NY uses a C02 laser by Omiguide.
the advantage is it does erase the cholesteatoma cells however.
if the cholesteatoma has eroded your ossicular chain aka hammer and anvil/ 'bones of hearing'
the laser can't undo the erosion of those bones.
this is a serious tool and not every surgeon or hospital has access to one. that's your job to find
one that does. and now you have.
stop swearing in here and go get the job done. there is no alternative.

 on: June 09, 2013, 08:09:34 PM 
Started by JaneyJane - Last post by Mike in VT
the metallic taste in your mouth is a clue you must seek a medical review.
your facial nerve can cause this if there was damage or after this much time
perhaps an infection.
clearly something isn't right and you need to make it right if possible.

 on: June 09, 2013, 08:01:53 PM 
Started by westy674 - Last post by Mike in VT
Hello from VT. USA.
exactly two months ago i had the canal wall up procedure. the malleus and incus (hammer and anvil) bones
were removed. the tip of the hammer was salvaged and placed on the new ear drum in combination with
a micron II titanium prosthesis. in English this means the surgeon linked my inner ear from the stirrup to my ear drum again.
the highest frequencies for me are harder to hear. if i plug my good ear and listen to a fan across the room i'll hear the motor or some fan sound but not the air swishing. the 'top' of the S's are harder to hear.
one thing i can tell you is for two weeks following the surgery i was stone deaf in that ear due to the ear canal being stuffed like a sausage with antibiotic paste and Gauze. they do that so the ear canal retains it's shape and doesn't heal itself shut. having one ear only is different because EVERY sound is seemingly coming from one side. you have no directional capability. that is frustrating. you'll find yourself doing the Stevie Wonder moving your head back and forth to locate sounds.
If you can hear well enough now to get back in the military then get back in first.
cholesteatoma's must be dealt with through surgery but it won't engulf your facial nerve in a couple of months so you have some time on your side.
everyone is different. my surgeon., Dr. Mark Levenson, Saratoga Springs NY, has been in  this business for over 30 years. Also I'd find a way to determine what hearing levels are acceptable or waiverable in the military as there are a LOT of ear injured soldiers these days and many are still in.
Good luck. if you want to write, and I'll be happy to answer anything else if
I can. so far so good. my ear is very much still healing inside. the outer incision is barely noticeable as it was done on the crease of where my ear meets my head.
can't look back but hoping for a bit more of the high end stuff to come back alittle more.
take care.

 on: June 06, 2013, 02:20:53 PM 
Started by earmommy - Last post by Christopher
Hang in there! I had three ear operations to remove my c-toma (left ear only), all before the age of 6, and I required regular cleanings to minimize infections and complications all the way into my teenage years, in addition to some speech therapy. I'm now in my late thirties and I can tell you it will get better. I'm sure my parents went through what you're going through now.

I suggest you help your son develop healthy strategies that he can grow used to and feel okay with. I'm not fully aware of his details, but I'm essentially deaf in my left ear (it has a large empty cavity inside after nearly everything was removed). My right ear is okay. Based on my info, here are some tips that helped me (apologies if some or most of these don't apply for you).

* Always have ear drops ready. I've always used a formula with this ratio: 2tbsp hydrogen peroxide solution, 1tsp vinegar, 1tsp rubbing alcohol. The trick is getting the right temperature. Too hot stings badly. Too cold and the whole world will be spinning with a massive head ache.
* Keep clean tissues with him that are accessible. That way if his ear starts draining (and it might smell), he can do his best to clean it some if he's at school or with friends or out of the house--- until he can use the ear drops.
* Be upfront about his situation with friends and other families. They don't need all of the details, but need to know there will be complications likely with motion sickness and keeping the ear dry. Car rides could be troubling (less so for me as I got older). Amusement park rides should be out of the question. Swimming is complicated. Showers shouldn't be a problem, although I mostly took baths until around age 13-14.
* When it comes to hearing, he should become more strategic. I sit or walk next to someone so my good ear is closest to them, even if I have to tell them it's easier for me. For me, I can't sense the direction a sound is coming from. Large crowded areas are tough for me to focus. Finding friends in a busy lunch room was always a challenge for me (I also didn't know my vision was 20/50 growing up). If you have multiple phones in the home then make sure each phone has a different ringer.
* Let him know that the human body and mind are great when it comes to adapting. If he keeps a good attitude and continues to search for successful solutions then he will find them.
* Remind him that there is no such thing as normal. People like him are redefining normal every single day.

Also--- my ear only drains about once every few months and I've pretty much been able to manage it myself for the last 20 years. During this period, I've only visited a specialist twice (to get my cavity cleaned out). Otherwise, I practice prevention and self-cleaning.

Best wishes to you, your son, and your family.

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