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 on: July 03, 2015, 11:05:15 PM 
Started by jowen - Last post by jowen
After years and years of ear trouble, my 17 yr old daughter has been diagnosed with cholesteatoma. Her ENT in Jackson, TN, Dr. Karl Studtmann says she needs surgery and has referred us to Vanderbilt Children's per our request. We have seen our ENT there once, Dr. Edward Penn. He is very kind but extremely young and I am nervous about how much experience he has had with this surgery. Does anyone have specific recommendations for ENTs with cholesteatoma experience, especially at Le Bonheur in Memphis or Vanderbilt? Thanks for your help.

 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: February 24, 2015, 01:47:15 AM 
Started by Marie - Last post by Elobangky
Everything in this world is always beautiful.

 on: February 24, 2015, 01:30:41 AM 
Started by Sky Kitty - Last post by Elobangky
solution have is always Do not worry.

 on: February 12, 2015, 02:37:15 AM 
Started by Joey - Last post by Humbernyui
I tried to follow the instructions.

 on: February 12, 2015, 02:15:44 AM 
Started by steve - Last post by Humbernyui
You have so much credibility.

 on: February 04, 2015, 11:22:12 PM 
Started by cochrankids - Last post by Killercallously
Where to learn more.

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