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 on: June 22, 2015, 05:19:27 PM 
Started by Tim Pierzita - Last post by Tim Pierzita
Hello, at the age of two I drowned and was very quickly revived. I was told that your ears go first then the lungs, what ever that means? Well I developed an pneumonia and apparently my left ear developed an inner ear infection that went unchecked for years. Only after concerns from my teacher and bad grades were hearing test performed. I was deaf in my left ear. Thanks, now I get too sit in front of the class, so I could hear better. Around 1969 at the age of eight I had my first surgery to replace or repair the ossicles and to perform tympanoplasty. The 1st surgery was performed in Oakland Ca. by a Dr. Mrs. Cox or similar name I cant remember. Then a later operation to reconstruct the retracted ear drum and to rebuild up a bridge or back wall. Well this left me with 2 problems, still no stereo, and then at the age of twenty-three that I have a hole in my head that needs to be seen by a professional every 6 months. I have had the same ear Doctor for 31 years now. I don't always keep it dry and have battled many infections since. Sometimes I would go years without having the squamous debris and recurrent cholesteatoma removed.

While undergoing a recent annual DOT physical to determine my fitness to drive a commercial vehicle and to keep up with the new laws, I was ordered to have sleep depravity test performed because I am overweight. Only after an over night stay at a sleep study lab have I have been diagnosed with a sleep disorder. This is where it gets critical. In order to keep my $62,000 a year job, I now have to be fitted with, and use a CPAP Continuous Positive Airway Pressure machine with a monitoring chip. So far not a problem. While attending a class to be fitted for a CPAP machine I was surprised to see the small room packed with people. While trying the machine, I asked the instructor if it was normal for my (good) ear to pop like driving at high elevations. He said, "shhh!" Then I felt like air was coming out of my bad ear, and felt like air was rushing through my head. Again I asked him if this was normal, he said save your questions for the end of class, so I began asking those around me if they too had felt the pressure in their head. I was alone.

I brought the machine home and found out It was impossible for me to use. I described the pain as having a pencil wedged between my ears, with the sharp end pushing outward against my bad ear and the eraser part pushing against my good ear. I called Kaiser and explained the pain I was experiencing and they told me to stop using it. Then my own ear doctor said my ear drum is intact and basically keep using it, get used to it. The results from using that machine for me, were negative. I developed an ear ache in my bad ear that drained heavily for over 2 months. The pressure to my good ear lasted as long. and 9 months later I still have recurring sharp pointy pains that sometimes take me to my knees. More recent I have developed slight drainage, that requires another visit to my doctor. Unable to meet the DOT physical requirements my 40 years as a professional truck driver are washed up. I wonder if anyone else out there has had this problem using the CPAP? Thanks, Tim 

 on: April 25, 2015, 11:20:25 PM 
Started by invisibleink - Last post by SEichner
Hi.  I was wondering how you are feeling now that it is another month since you posted.  I just found out that I have a c-toma also and will be going to the House Ear Clinic in Los Angeles, to find out what my surgical options are.  I've only heard about a canal up or a canal down surgery, not an endoscopic surgery.  What is that, so I can ask about it when I go the clinic?  Is your hearing any better yet?  Was the surgery very painful?

 on: March 25, 2015, 03:48:34 PM 
Started by invisibleink - Last post by invisibleink

I was diagnosed with c-toma few months back on my left ear. I had an endoscopic surgery done 2 weeks ago. Doc said that he removed a large c-toma, took the bones out, cleaned and put them back(amazing if he really did so). A few days after I was able to get back to life with some minor dizziness, balance problems. However, my hearing is very little recovered since day one. I was wondering how long it typically takes for hearing to get better after the surgery? I am 29 and really concerned.

 on: March 20, 2015, 12:24:16 AM 
Started by ladyvee - Last post by ladyvee
I had lived with an undiscovered c-toma for about 5 years. I had the constant pain, ringing, fullness, multiple ear infections, yucky drainage and some days loss of hearing. I was finally diagnosed and the specialist removed a large one out of my ear. This was done in the office with just novacaine. A ct and an mri was done and it was only found to be in the external ear canal. I followed up with him 2 weeks later. It had destroyed the shape of my inner ear and made it a prime ground for more to develop but he was confident he got it all.
I went back 4 weeks after the removal and the doc did not like the way that area looked...he did a biopsy and the report came back as a differential diagnose of either c-toma(duh) or malignant cells. The doc said it must be remnants of the c-toma and suctioned out my ear and had me return in one month. Which I did and I went back 4 weeks later and...
There are now 3 spots in my ear that look bad and look as if c-toma's are forming. He took biopsies of the 2 new areas, While doing so the novocaine did not work and as he pulled the tissue off(very painful) he gasped and said that the new spot was down to the bone and that bone was now exposed from the diseased patch of skin and numbing my ear was no longer going to work. It is the bone along side my face, in front of my ear, and ever since then, my face feels funny and my retainer doesn't fit right on that side and my jaw hurts alot.
The biopsy report came back the same as the is either a squamous cell carcinoma or a c-toma? The doc says it's not cancer and is making me wait another 4 weeks to be seen again. I am so scared! is there anyone that had a biopsy read this way on their c-toma? I don;t understand how I can get 2 new spots in 4 weeks, when it took over 4 years for the first one to form? No other doc in cincinnati will see me and I just got word that my doc decided to retire and now they ahve to find a doc that can help me! i am angry, in the begining it was found in the back of the ear canal and my face was it's near the face and i am having problems! Please help! i would feel better if someone somewhere had a biopsy that read like mine!

 on: December 29, 2014, 10:35:51 PM 
Started by Sky Kitty - Last post by Sky Kitty
I don't know if I have Choleteatoma with absolute certainty, but it's in the back of my mind. I have a ear that feels stingy, crusty(Behind the drum), hasn't popped in ages, mild hearing loss, constant ringing, throbbing, and full feeling. Naturally I want the best treatment possible. Who wouldn't? This is scary crap.

I have a ENT appointment tomorrow.

 on: December 29, 2014, 08:39:30 PM 
Started by Sky Kitty - Last post by Sky Kitty
I have a ear that hasn't popped in months, feels crusty, rings, throbs, and I have occasional deaf spells. Could just be a combination of a cold/allergies, and ear barotramura, due to latitude changes in a car.

I have a ENT appointment tomorrow. I'm overwhelmed with fear. Sad

 on: November 12, 2014, 10:23:19 AM 
Started by Bubby6 - Last post by Bubby6
I was just diagnosed with a cholesteatoma in my right ear.  Does anyone have the name/s of a good surgeon in Jacksonville, Florida?  Thanks.

 on: October 15, 2014, 01:50:18 AM 
Started by meleto - Last post by meleto
hi just had surgery last week,four hours my second cholesteatoma,this time had to put a cativty in my ear canal, i guess it was a canal wall down.have to get cleaned out two to four times a year for rest of my life i am 55 years old.ears problems all my life to had lot work done,my question is will i ever be able to swim again?

 on: September 08, 2014, 10:43:01 PM 
Started by ammon44 - Last post by HuffDaddy
After reading this thread we called Dr Gantz about a year ago and we are glad we did. Our 11 year old son had already had the CWU procedure here in Kansas City and the desease grew back. We were looking at having a traditional CWD procedure by the same surgeon who we really liked but my son is a swimmer/triathlete etc, etc. This procedure just did not sound right. Surely there has to be a better way? Anyway we found this post and made a call, drove up to Iowa and had surgery scheduled within maybe 48 hours of reading this post. Everything went well with the big surgery and just 5 days ago we completed the follow up surgery (aprox 7 months later). They found one tiny little dead "pearl" which is what they like to see I guess and put in his titanium middle ear bones. So far so good. He is doing great and we are feeling really good about it. I guess our boy was loaded up with the stuff about as much as they have ever seen. Pretty much every open space possible was packed with the desease. Anyway, we love the Univeristy of Iowa Hospital and we are pretty darn happy we found them. I guess we will always worry about it growing back again some day but I do like the idea that this procedure reduces the likelyhood by removing the negative pressure that was continuing to form pockets and/or retractions in his ear drum. Hopefully my son's eustacian tubes will begin to function better as he grows. So far so good for us! Good luck to anyone reading this as well! I would be glad to answer any questoions about our experience so far.

Scott Huffman 816-210-3658

 on: June 27, 2014, 01:44:09 PM 
Started by CDol - Last post by CDol
I have had ear infections for many years in my left ear with ear tubes twice. I went last week to have clogged ear tube cleaned. The ENT Dr pulled out two long strips of skin and urged me to call an ear specialist ASAP as it is a cholesteatoma. I had a ct scan yesterday which showed no abnormalities. Can a CT scan be negative and still be a c-toma? Thanks!

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