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 91 
 on: November 18, 2013, 04:03:25 PM 
Started by Marie - Last post by steve
Hi Marie,
When I first started getting symptoms of cholesteatoma I saw endless doctor's.  One thing I also remember of the early symptoms was my saliva gland in my neck swelled up below the ear.  The GP's I saw had no idea, one even thought I had mumps!  They are only 'General Practitioner's' as their name suggests, they are not used to seeing people with this condition.  Even when I initially admitted myself to hospital the ENT doctors there thought I had an ear infection and actually discharged me after a few days.  It was only when I got bad vertigo and my wife called an ambulance I saw a specialist who knew his stuff.  I remember him telling his staff to line up and look down a microscope at my ear so they could see what was wrong with me (a bit of a telling off for them).  It sounds wrong that you have to pay so much money where you are if you are ill.  Although our NHS can vary alot around the UK we are very fortunate that we don't have to pay to see a specialist.  One thing I had which sounds similar to what you are experiencing is that I knew something wasn't right because of the time it was going on.  A cold or ear infection would clear up in weeks, not months.  I spoke to friends and work colleagues and the best advice I got was to pester the health services endlessly until they got it right.  I hope you manage to find a good ENT consultant that can help, keep nagging them and take care!

 92 
 on: November 17, 2013, 07:50:03 PM 
Started by old-dusty-moon - Last post by Marie
Can someone please give me some information about ct scans showing cholesteatoma. I would like to hear from anyone that has been thru that. I have symptoms of c-toma but a ct scan doesn't show anything. My ent hasn't seen anything. Has anyone had a c-toma that was not visible with a microscope when they looked in your ear? How  often are cholesteatomas down farther in the the ear and cannot be seen? Am I worrying for nothing? Even if I have symptoms? What about mri's? Is there some other test or some other way an ear doctor can view the middle ear to make sure nothing is there? I've searched on the web and have not been able to contact anyone about this issue. Please give me some advice as to what to do next and what to ask my ent.

 93 
 on: November 15, 2013, 09:09:46 PM 
Started by Marie - Last post by Marie
I found out that my eardrum is slightly retracted. What should I do? A c-toma has not been found yet but I am very scared that I could have one that isn't visible or get one in the future do to the eardrum. I  had a ct scan that supposedly doesn't show anything. Can I rely on this as fact that there isn't one there? What can I do about my eardrum retracting to try and prevent a c-toma since I know that this is one of the causes? Please someone who has been thru this let me know what I can do. I am scared to death and I am so depressed. Please help me.

 94 
 on: November 15, 2013, 07:28:56 AM 
Started by Marie - Last post by Marie
I was reading somewhere online about a fairly new way of removing cholesteatoma where you can get your ear wet. Someone was telling the story about their son having this type of operation and they were glad  they opted for this. Can someone please tell me about this. I wish I could find it again and remember more. I need the information as I'm suspicious that I have a c-toma. I've had a ct scan that showed nothing but I just read a story about someone who had a ct that showed nothing as well. Is there anyone out there that can tell me how to go about getting a diagnosis or ruling this out? I have all the symptoms.

 95 
 on: November 14, 2013, 09:13:40 PM 
Started by Marie - Last post by Marie
Hi Steve,
             My ent told me there was nothing that he could do for me and referred me to some doctor that I can't see as I have no insurance and the first office visit is over $500. I am not joking about the amount. For one office visit. I have all of the symptoms of cholesteatoma except the drainage. It started for me with a sinus infection when about 8 days later I had an ear infection which I got antibiotics for right away. After taking those my ear wasn't right and I went to clinic and they said I had fluid in the ear. Went to an ent then he told me for two months to use flonase which didn't help any. Went to another ent who drained the fluid from my ear a couple months ago. My ear hasn't been the same since the infection. I have decreased hearing, I feel a vibration with air when I speak and I have pressure, pain, and popping. Also off balance and dizziness. The ent that doesn't want to see me anymore says eustachian tube dysfunction. Is it really? Why would I have this all of a sudden? I'm wondering why my ear wouldn't drain from the infection. Makes me wonder if something in there preventing it from. I am still having these symptoms and am scheduled to get a tube in the ear in a few hours. I am really scared about all of this. I have no one to talk to that will listen or understand. Would a tube help to prevent a cholesteatoma if I don't have one? Doesn't eustachian tube dysfunction cause one to have this?

 96 
 on: November 14, 2013, 08:29:52 AM 
Started by Wayne2011 - Last post by Lillian
Hello,I had my surgery in the same hospital in Shanghai.

 97 
 on: November 06, 2013, 07:20:27 AM 
Started by Marie - Last post by steve
Hi Marie,
Cholesteatomas can take years to form.  They usually form when there is a vacuum behind the ear drum which pulls it back and causes a sack to form at the top on the other side.  After I had my first one removed (age 30) and my ear drum rebuilt - my specialist could gradually see my ear drum being sucked back (over years) by looking down my ear canal.  It took nearly 10 years for a second one to form.  He did think at one time about putting a grommet (hole) to prevent a vacuum but that never seemed to happen.
My original symptoms when I first had one were 1. loss of hearing (no pain) for about 1 month, 2. then stabbing pain (lasted about a week), 3. constant aching pain (like toothache), 4. then increasing dizziness (felt like I'd been drinking).  When the dizziness became so bad I admitted myself to hospital and a CT scan showed the cholesteatoma.  I've known people that have had similar symptoms but over several years rather than months.
My hospital didn't use an MRI originally as it couldn't see something as small as a newly formed Cholesteatoma.  It has recently just upgraded its MRI so it can now see one.
Another symptom is you tend to get big smelly ear discharges if one's formed.
As the cholesteatoma forms on the other side of the ear drum the specialist may not be able to see it by looking down the ear canal.  In my case it did make a small hole at the top of my ear drum which was spotted by my specialist.
I'm sure you will be okay - the main thing is that you are being monitored by your specialist.
Take care! - Steve (UK).

 98 
 on: October 28, 2013, 01:59:42 PM 
Started by Marie - Last post by Marie
I am worried about having a cholesteatoma. I had an ear infection 4 months ago in my left ear. I had fluid in the ear and had to have a myringotomy. I'm afraid of having a cholesteatoma that has been undiagnosed. Is it true that your eustachian tube causes this to happen? Then the myringtomy increasing the odds has me really nervous. I had a ct scan which showed nothing. Has anyone had a negative ct and found out that they did have a cholesteatoma? How long are they growing usually before they are found in the average person? Weeks, months? What are the symptoms, even the slightest symptoms? Does an Mri show better than ct? Has anyone had slight ear pain and hearing loss with no drainage? How bad is the dizzyness usually? Is it an off balance feeling or vertigo and nausea both? Can some cholesteatomas not be visible to the ent when inspecting ear with microscope? Please someone post as I am very nervous about this.

 99 
 on: September 27, 2013, 08:29:31 PM 
Started by cubdukat - Last post by cubdukat
I'm 45 years old, and I've had a history of ear infections in my left ear since I was at least 10. I had two of them when I was 14 that went untreated, and apparently that's where the seeds for my first C-toma were planted.

In 1992, I started losing my hearing while I was in the Navy, and they couldn't figure out what was causing it, because even though I had a hole in my eardrum, the amount of hearing loss I was experiencing wasn't proportionate to the size of the hole. They decided to operate, and that's when they found the first C-toma had eaten through most of the incus. The surgery wasn't that bad, considering I was awake for it. I wasn't in very much pain, and I barely touched the Tylenol and Codeine they gave me.

Unfortunately, my hearing did not improve as much as they'd hoped, and I still had infections in that ear for the next 20+ years. In 2006, I went to the ER at our local hospital and they did a CAT scan. From the way the results read, it sounded like they might've stumbed onto a second larger C-toma that had overgrown the implant. Because I didn't have the money nor the insurance for the surgery, they just treated the infection.

Finally, I was able to get a job working for the state of Illinois that provided me with health insurance, but before that I was averaging about two or three infections a year. The last one I had in July of this year was untreated, so it also developed into an outer ear infection (a first), so I finally decided to see a specialist. After some pretty brutal antibiotics, I cleared the infection, and he mentioned surgery again. This time, I decided that I would go ahead with it, whether or not I could afford it, because it was just time. The initial plan is to take a look inside and then patch the hole in my eardrum, but considering my record and the fact that they did find something in 2006 that they never acted on, I'm thinking it's gonna end up being worst-case scenario: a tympanomastoidectomy.

 100 
 on: September 27, 2013, 04:23:17 AM 
Started by steve - Last post by steve
I know there are likely to be very few people out there who are likely to have this done, but here is my current experience in the hope it may help those who do.

My operation was on Monday and was described as a 'Mastoid Obliteration'.  For some people the mastoid is reconstructed after a some years but for mine it has been removed indefinitely.

As I have no hearing left in my affected ear, and have had 3 previous surgeries to remove cholesteatoma it was decided to have this procedure.

My ear canal, mastoid, ear drum and conductive bones (ossicles) have all been removed and the mastoid replaced with tummy fat from my belly.  Were you to look into where my ear canal was you would now expect to see a belly button where it has been sealed up.  The cavity (at the other end) where my cochlea is has been left sealed dry with my eustachian tube plugged.  Follow up MRI after 2 years to check all skin cells have been eliminated from the mastoid area.  The reason for tummy fat being used to replace this area is to help skin cells show up on future MRI scans (better contrast).

4 days after surgery I am starting to feel more normal.  Things are still swollen and sore, but feel better today.  I know it will take a bit longer to recover compared to my other op's due to the extent of what has been taken out.

Hopefully when all is healed I can continue life knowing that cholesteatoma is never able to come back in this ear.

Thoughts are with U all.
Steve (UK).

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