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 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?

 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.

 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).

 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.

 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.

 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).

 on: September 22, 2013, 10:39:18 PM 
Started by hawaiibound1 - Last post by Feismom
Update:  Daughter had second surgery in early August to explore Osculatory ear bones...  Dr. went in using new equipment entering under eardrum.  According to doctor, it looked great.  No cholesteatoma and earphones were in good condition.  Daughters hearing loss is about 23% and has never improved after cholesteatoma was removed a year ago.  Blessed that cholesteatoma grew downwards instead of upwards.  Going back in November 2013 for another hearing test.  Hope for some improvement!

 on: September 22, 2013, 01:18:43 PM 
Started by meagan - Last post by meagan
Hi everyone.

I had a CWD radical mastoidectomy about 12 months ago. My ctoma was worse than originally suspected and I lost all my hearing bones, as well as my ear drum. The recovery process was tough at first, but I think my life has pretty much returned to normal (besides some slight dizziness and obviously hearing loss).

About once a month I use my iphone to video tape my ear canal and see what it looks like. This past week I was doing this and noticed a white pearl looking thing in the back of my ear. I immediately thought it was puss and I had an infection so I emailed some pictures to my ENT. He told me it looked like a keratin pearl and made an appointment for me the following day. He takes a look and says it is in fact a keratin pearl and that he should be able to easily remove it. There was nothing easy about it and it was painful and bloody. Apparently my ear drum keeps growing back, and this 'pearl' was growing out of my eardrum, towards the entrance. My dr says we need to monitor it, and I have another appointment 2 months from now.

My question is this. I have yet to find any information on 'keratin pearls' after cholesteatoma surgery. I did find something called a keratoma, and I found an article about how a keratoma and a cholesteatoma are virtually the same except a cholesteatoma means there's bone erosion, and a keratoma means there isn't. So it sounds to me like this is a recurrence, I just caught it early, right? I feel like my dr just doesn't want me to worry so he's not telling me the whole truth.

Does anyone else have a history of keratin pearls? Or keratomas?

Thanks for reading Smiley

 on: September 19, 2013, 04:28:14 PM 
Started by dameyer - Last post by meagan
I had sharp pains as well, much different than what most people here describe. I continued to take vicodin (though less as time went on) for almost 3 weeks post surgery.

In regards to the numbness: I am nearly 12 months post surgery and there are still areas or my ear with some numbness. But it's a million times better than it was. The best way I can describe it is it felt like my ear was a piece of plastic on my head, like it wasn't connected to my body. It still feels like that a little bit, but again, a million times better than it was. Also, the cartilage in my ear hardened after the surgery and became less flexible. That has marginally improved but is still annoying.

Hope you're doing better, you're not alone!

 on: September 19, 2013, 04:09:29 PM 
Started by meagan - Last post by meagan
Sorry I didn't check this sooner!

Just a little update: I remember writing this original post thinking I would always have vertigo, and I'm sure there's someone reading this with the same fear. But I'm happy to say it got better! I no longer have any nystagmus, I don't feel like the world is tilting, I resumed driving on the highway 3-4 months post surgery, and and I even went stand-up paddle boarding (requires soo much balance, never thought I'd be able to do that again) over the summer! Unfortunately, I'm still dizzy, but mostly just when turning my head to my bad side and when I stand up too fast. But I don't think it has a major impact on my life whatsoever.

Shoop- I'm sure you've had therapy already, but for anyone else wondering, my balance and dizzy therapy went like this:

First my therapist advised me that I needed to improve my posture because having a balanced field of vision is important (I hope this makes sense). Try not to tilt your head to one side or up or down too much. I think this helped, but I had terrible posture to begin with.

The other main exercise I did went like this: I would tape a large capital letter E to a blank wall and sit in a chair about 4 feet away facing the wall. I would very slowly turn my head to each side (look to your left, then straight, then to your right) but kept my eyes on the letter E. Moving to my right side (my bad ear side) was really hard and would usually initiate nystagmus. She instructed me to just move even slower if it got too hard and stop if I needed to. I started out doing this 8-10 times each side 3-4 times a day and eventually increased to 20 times each side 3-4 times a day while standing (vs sitting).

Something that I really struggled with was driving or riding in a car. It was overwhelming because trees, cars, etc were moving too fast, so my therapist suggested I look straight ahead at the farthest thing in front of me and focus on that while in a car.

Sadly I was a bad patient and stopped going when I could function relatively normal again. I'm sure there are many more exercises but the E on the wall while turning my head really helped me the most. Also, my main problem was turning my head to my bad side, if your problem is different I'm not sure that exercise would be affective.

Steve-thanks for your reply, your recovery time sounds about the same as mine: 2 months before I was driving. Though I avoided the highway for longer because I couldn't quickly look over my right shoulder when changing lanes without getting dizzy.

Interesting that you mention your dizziness pre-surgery. I specifically remember being dizzy every morning when I first woke up for 3-4 years pre-diagnosis. I had just always assumed it was because I was still tired. I didn't even associate the two until my pre-op appt when my surgeon asked, "have you been experiencing any dizziness?".

Even now nearly 12 months later, I don't think I feel 'normal', especially when turning my head to my bad side, and closing my eyes like you mentioned. I'm hoping my balance will continue to improve like yours has Smiley

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