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 on: December 08, 2013, 05:55:03 PM 
Started by Marie - Last post by Debs
Hi Marie
Sorry for the late reply.  I actually had the c-toma in my left ear, I kept on going to see ENT surgeons about my right ear - which is the one that I have had all the problems with.  I know there is something wrong with the right ear as I get pain in my ear and up the side of my head and I've got the retraction there.  They constantly tell me I don't get pain in my ear.  The c-toma in the left was found by accident really, I had a hearing test in which they found I was quite deaf, then after he took a bit of wax out (which has been there for ages as it never came out when my ear was syringed) he found the perforation.  Assured me it would be a minor op to repair eardrum but then found the c-toma which was actually quite a large one and underneath the hearing bones, there was no choice but to remove the bones.  Apart from deafness there were no other symptoms.  I am waiting for an MRI for both ears now which will hopefully show what exactly is wrong with my right ear.  I am 52 now and had my right ear operated on when I was a teenager, back then they used plastic to repair eardrums!  I think a bit of that plastic worked its way out.
No one in my family has had cholesteatoma and I've always had fluid build up since I was young and had grommets etc. It was the ENT surgeons who told me a retracted eardrum is nothing to worry about - I'm never going to take their word for anything again and will probably become a nuisance, but I know my ears and know there is definitely something wrong with my right ear.  I don't know what caused the c-toma in my left ear because I always said that was my good ear.  Not sure if it was wall up or down, he never said but I'll be asking next time I go.
Mine is still early days - only 5 weeks so I can't get it wet yet.
Persevere and ask for an MRI, apparently that will show anything up, I'm still waiting for mine.  My Dr seems to think it will give me peace of mind, but I think it will show my worst fears, but as I said before, the surgery wasn't actually too bad and did heal well.  Hope you get sorted.  One last thing, do make sure you see a surgeon who is trained in otology.

 on: November 27, 2013, 04:02:40 PM 
Started by Marie - Last post by Marie
How many people have had a c-toma that an ear doctor didn't see and was not visible on a ct scan? How often are they not up by the eardrum where they can be see? Is there such a thing as a c-toma in the eustachian tube?

 on: November 27, 2013, 03:51:52 PM 
Started by katie - Last post by Marie
I'm afraid that I might have a c-toma as well. A ct showed nothing. Did they remove a c-toma in April? Is that what happened in the surgery? Some doctors just like to do another surgery six months later to see if it has come back. Have you went to a cholesteatoma specialist? I think an otologist is better than an ent. How many doctors have you been to? The ent that I went to today is going to order an mri but I found out about it and I am not going to be able to put this helmet on my head and lay in this tube for an hour without moving. I can't do it. What is suppose to be more reliable? The ct or mri? I can't get any answers to my questions about this? A technician told me that an mri would probably be better for a ctoma or soft tissue mass. The ent that I was going to said I have eustachian tube dysfunction but I think there is something inside my ear. It feels that way. I've had two myringotomies since September. One to drain fluid the other for pressure as my eardrum was slightly retracted. I had  the second one almost two weeks ago. Since then I have been left with a constant ringing in that ear. I'm hoping it goes away as my eardrum heals in several weeks. I didn't have any ringing in my ear until immediately after the procedure. I wish I had never had it done the second time. I have neurological symptoms as well. I feel alittle dizzy at times and have pain in my ear which is why I think I how something inside there. How bad is it to take an mri? Does it make you feel trapped inside? Did you have to put a helmet on your head and did they give you an injection when you took it. If they gave you an injection what was it like? I don't want to go thru all that if there is a chance it isn't going to show something. I'm sick all the time plus I can't hear out of the one ear. I don't know what to do next?

 on: November 26, 2013, 06:44:48 PM 
Started by momo - Last post by momo
My 4 year old son may have congenitac cholesteatoma. The hearing test was normal. Does it mean that his stage has not progressed? Or, the good  hearing test result does not mean that his cholesteatoma is not bad? We have to wait for the CT scan about 3 weeks, and I am very worried. Please advise.

 on: November 24, 2013, 11:08:26 PM 
Started by katie - Last post by katie
35 yo female with life-long history. It was either congenital or acquired after tubes were inserted and then fell in at age 3.

At age 12 the first big piece of rotten bone fell out of my ear. Ear drum was never affected. A series of doctors missed the hole in the ear canal and infection festered and spread for years.

At around age 22 an ent discovered the hole and did a partial canal wall up mastoidectomy. I felt better for several years with 2-3 flare ups a year that seemed to  resolve with antibiotics. Then the flare ups got more intense and more frequent.

Over several years multiple scans, both ct and mri, said everything was fine. But I knew it was still there. That brings me to this year. In April a new ent ordered a ct scan. It said everything was pristine. He did not believe there was any infection but he agreed to do a skin graft to close a tiny hole in the ear canal.

When he got in there he found the entire remaining mastoid bone was destroyed and infected. The cavity was full of granulation tissue. He removed the rest of the bone. I woke up so relieved that finally they had found it, but that was short lived because my symptoms are worse now than before and as usual scans show nothing. I know that the cholesteatoma has spread into my skull bones but I cannot get any doctor to go in with a negative ct and mri.

I am definitely running out of time. I have a bed set up in the living room. Cant work. High intracranial pressure and bp. I am starting to have some neurological symptoms.

Can anyone advise?

 on: November 22, 2013, 10:41:18 AM 
Started by Marie - Last post by Marie
          thanks for writing. How could they miss a ctoma when they did surgery and removed a piece of plastic? what was this piece of plastic from and how did it get there? where at in the ear was this piece of plastic? Does anyone in your family have cholesteatomas? What other symptoms did you have in the ear with it? Did you ever have any fluid build up?   Who told you that your retracted eardrum was nothing to worry about was it an ent or general practitioner? What led up to you having mastoid surgery over thirty years ago?  How old were you? Do you think that is what caused the ctoma?  Did an ent ever look in your ear with a microscope? Was the ctoma visible that way or was it so far back that it couldn't be seen with a microscope? Sorry for all the questions, I just want to understand everything I can and put it together and connect it. Did you ever have a feeling of fullness in the ear? Were you ever told that you have eustachian tube dysfunction? I'm looking for any similarities in our conditions. I hope your surgery was successful. Was it canal wall up or down? Can you get your ears wet?

 on: November 19, 2013, 06:29:04 PM 
Started by Marie - Last post by Debs
Hi Marie

I have had ear problems all of my life and had a tympanoplasty and mastoid surgery in my right ear 33 years ago.  I always had my ears microsuctioned, then 9 years ago I started having pain in my right ear.  I was told I had a retracted eardrum but it was nothing to worry about, eventually I had exploratory surgery and they removed a piece of plastic (remanents from first surgery).  I still got the pain but was discharged.  I then had to have my ears syringed at my surgery, I also resorted to using ear candles.  The pain got worse - in my eardrum, behind my ear and up the side of my head and eye.  I got a referral to an ENT surgeon, had a CT scan and was told there was nothing wrong and that I didn't get pain in my ear!
Discharged again, another year went by with pain getting worse and clear discharge at night.  I went to a private microsuction clinic, the Dr there said I needed another referral and to be insistent as he thought I needed a T tube put in.  Saw another Dr, had a hearing test and found I was hard of hearing, but in my left ear, he looked at my scan and said I had a perforation in my left ear but my right ear was fine.  Had the surgery 3 weeks ago, it took 3 hours as he found a large Cholesteatoma and he had to remove my hearing bones, got to have more surgery and reconstruction in a year.  The Dr was shocked as it had not shown up on the CT scan, however he is now concerned about my right ear and I'm waiting for an MRI which will show him if he's managed to get all of the C-toma out and also if I do have one in my right ear (I suspect I have).  Be insistent and ask to see a surgeon who specialises in this.  Just to say if you do end up having surgery, don't worry.  In the right hands you will be fine, it's really not painful - my main problem is tinnitus which I hope the Dr will tell me is normal and hopefully will go away!
Good luck

 on: November 18, 2013, 06:31:20 PM 
Started by Marie - Last post by Marie
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?

 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!

 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.

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