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 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 15, 2014, 07:38:11 PM 
Started by Stayingpositive - Last post by Stayingpositive
I am writing this thread about experiences from my own perspective as a partner of a Cholesteatoma sufferer.  I have searched the internet for experiences similar to mine but was unable to find anything.  I am hoping that this story may be able to help others understand their loved ones (or themselves) if a similar thing happens (or has happened) to them.

About 11 years ago when my partner was 31 years old, he slowly began to treat me differently.  Very gradually, his behaviour towards me changed and he no longer seemed to care about me (or our young children) and his love and kindness slowly became what I can really only describe as hatred.  He lost weight and became withdrawn, he didn't come home much as he worked a job that required him to be there for long hours but when he wasn't at work I mostly had no idea where he was.  When I did see him, all he would say to me was that his love for me was lost and he wanted to leave.

I became highly stressed about this situation and began to react to his nastiness and other behaviours that were completely out of character by being nasty back - this basically made our home life a living hell.  I did not have enough experience to know that all of this was happening because he was suffering from depression.  Depression isn't like a broken arm, you cant see it - I had no idea what was happening until much later...

After about 6 months, he slowly started to get back to being his old self, a little while after this he was diagnosed with Cholesteatoma.  This was after his GP finally realised that his recurring ear infections needed further investigation by an ENT. 

He was finally diagnosed with Cholesteatoma and after the operation to remove it, he needed a subsequent exploratory operation (about 6 months after) to check to see all of the growth had been removed.  He had several procedures to insert grommets in the time after this and about 5 years after his initial operation, he had rhinoplasty to correct the structure inside his nasal passages as his Eustachian wasn't functioning properly. Apart from the occasional ear infection, things were pretty good with his ear for a while.

In May last year, I saw glimmers of him being nasty towards me and out of character behaviour but I put it down to him losing his father the previous year and his mother was terminally ill. On our yearly family holiday a few months later, he began to say to me that he wasn't happy, and he wasn't happy with our relationship and he wanted to leave.  It was like deja vous, being a bit older and wiser decided to put my energy into researching - to try and find an answer about what was going on.  I wanted to know what was causing him to be this way, it was difficult to communicate with him as he became very drained and unresponsive during any conversations.  The holiday was one of the saddest times, I booked us in to see a marriage counsellor while we were away to see if anything could be done and it didn't help at all.

After many hours of research I realised that he was suffering from depression. I asked other family members to help me encourage him to go and seek help from a psychologist, which he eventually did do but it did not help.  He tried taking an antidepressant but it did not work and made him very sick.  He had no energy to talk to me at all, we barely spoke for many weeks.  I continued to research depression so I could try to understand what he was going through (and how to care properly for him) and I also researched relationship issues.  He continued to say he wanted to leave as soon as he was feeling better from his depression.  I continued to care for him during his illness from the antidepressants and his major depression (as diagnosed by the psychologist).  As this had been the second time that he had said he wanted to leave, I began to believe him that we needed to go our separate ways.  He cried and cried when I told him he was free to leave and we could be friends as we continued to raise our kids.  Only one and a half days after this, he had a major meltdown and called me home from work (as he had been at home for quite a while because if his depression related illness), when I arrived he begged me to stay with him and said he did not understand what made him feel that he wanted to leave because he didn't want to as he loved me very much and always would and he didn't understand what had made him act the way that he had.

I agreed to stay with him and 2 months later his ear started leaking a clear fluid - as I had started to rely on (Doctor) Google for answers on just about everything, I Googled his symptoms and I became worried that this clear fluid was spinal fluid. He went to the ENT and it was discovered that the Cholesteatoma disease had returned aggressively and he needed to be rushed into surgery as soon as possible - it was life threatening.  The disease had eroded bone and was dangerously close to his brain and required a radical Mastoidectomy and Tympanoplasty.  We are very fortunate and grateful to have a wonderful ENT, he did a great job of the operation and recovery time was relatively fast.

Things have been going pretty well for him post op although he will be having a small op for a grommet in 2 weeks time - there is currently an issue with the pressure in his ear.

My intention of sharing this deeply personal story is that hopefully it may help someone. Through my depression research and subsequent Cholesteatoma research I have not seen any formal information about a linkage between the two in the way that was experienced by my partner. I asked the ENT what his thoughts were about suffering depression prior to Cholesteatoma and he said that in his opinion there is a link - anything intracranial can affect the normal functioning of the brain.  I also asked about whether anti-depressants may have contributed to his aggressive Cholesteatoma but he seemed to think not. 

I don't think this is the end of our story with Cholesteatoma, but if my partner and I are still together in the future I will definitely know what to look out for.

 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!

 on: May 17, 2014, 03:03:48 PM 
Started by salgal - Last post by salgal
Hi! I live near Seattle, WA and have had ear problems my whole life.I have Eustachian tube dysfunction and a deviated septum. I had tubes as a kid and many ear infections as a child and even as an adult....repeated eardrum ruptures. I've always had reduced hearing, but now at 40, I have moderate hearing loss, stuffy/plugged ears, occasional discharge and headaches.

In 2005, I had a parotidectomy a tumor in my spit gland. ENT found it when I was having problems with my ears/sinuses. 3 months of antibiotics and steroids. Saw and allergist. It seemed to mostly resolve itself.

Then 4 years ago, when I went back in for ear/sinus infection again, the same ENT told me I might possibly have a c-toma, but the ct scan came back not showing anything. He was pushing sinus surgery at the time so I just stopped seeing him.

Then during my entire pregnancy in 2012, I couldn't hear a thing. Stuffy/plugged ears and no one could tell me what was going on. Maybe blood volume due to pregnancy. Even after giving birth, I still have the problem. It gets a bit better occasionally, but never completely clears up. I switched ENTs and this one said moderate hearing loss due to my middle ear. Inner ear seems okay. I have a build up of skin on the outside of my ear drum and when she tried to remove it, I had vertigo. Twice, two weeks apart after ear drops to soften it. She stopped suctioning and suspects a c-toma connected to the middle ear bones. Now I'm off for another ct scan. And most likely a referral to a Otologist/surgeon in Seattle at Swedish Medical Center.

I am glad to see this message board. I used one during my parotidectomy too and the feeling of not being alone in this is priceless. Even tho, I don't know any of you.... thank you for being here. This whole thing is very scary.

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