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Author Topic: Ct Scan shows nothing  (Read 5842 times)
Marie
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Posts: 15


« on: October 28, 2013, 01:59:42 PM »

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.
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steve
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Posts: 5


« Reply #1 on: November 06, 2013, 07:20:27 AM »

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).
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Marie
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Posts: 15


« Reply #2 on: November 14, 2013, 09:13:40 PM »

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?
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steve
Newbie
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Posts: 5


« Reply #3 on: November 18, 2013, 04:03:25 PM »

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!
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Marie
Newbie
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Posts: 15


« Reply #4 on: November 18, 2013, 06:31:20 PM »

Dr. Castellon looked in my ear with a microscope. He is a board certified otolaryngologist or ent. Could he have missed it? Can a c-toma be back so far in the ear that it cannot be seen with a microscope? I read about someone getting a diagnosis with a camera in the ear. Would that be easier for an ent to see one with a camera instead of a microscope? I don't have the money to go to different doctors and ask all these questions. I want to get all my information and then start calling around to find an otologist or ent with the right type of tools or equipment to view the ear properly. Is there a way that they can see into the middle ear? Why don't they have a tiny ultrasound device that an ent could easily insert into your ear and put it on your eardrum and be able to see the middle ear on a screen like an ultrasound. I don't know if something like this exists as I just thought it up right now. If it doesn't it should though. What other symptoms did you have? How long did this go on for before you got diagnosed? Can you have a retracted eardrum and not have a c-toma? I guess you were watching for it closely when it came back. What is the reaccurance rate anyway? 60% or something like that. Have you had a ct scan and did it show anything? Believe it or not it was my idea to get the ct and I asked my ent if he would order it and he did. How dizzy did you get and how bad was the pressure? Could you feel your eardrum being sucked in?
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