Bilateral Cholesteatoma for 15 Years

Posted , 6 users are following.

Hi, I'm from the US, but it was hard to find a discussion group that discusses cholesteatomas in detail. 

When I was 15 years old, I developed horrible ear infections; to the point, where discharge was flowing out of my ear. I had visited several doctors, until my father decided I needed to see a specialist. I had a consultation with Dr. Friedman at the House Ear Clinic, here in California, and he knew right away that I had a Cholesteatoma. He stated that is was almost the worst case he had ever experienced, because it has been untreated for so long. 

At this point surgery was extremely necessary and they performed excision; but, the damage had been done and it destroyed the bones in my inner ear. The second surgery I had, they implanted a prosthetic which was supposed to help me hear; but, it never worked, or at least I don't remember it working. 

Dr. Friedman now practices with the Keck School of Medicine, at USC, and after a horrible infection in the other ear, which resulted in a mastoid diagnosis at the ER, he informed me that I had a cholesteatoma in my right ear as well. Surgery was placed on hold, because he doesn't want to rush into something that will cause damage or deafness. I believe he said that he was going to take scans of my ear, build a model of the current condition, and carefully review how he will be able to excist the growth; with minimal damage. 

After my second surgery, when the prosthetic was implanted, I had 30% hearing in my originally infected ear; I am not profoundly deaf and he doesn't know what happened. 

I have been so hesitant to have surgery on my new infection, because I'm terrified of going deaf. From what I can see, it is very rare that anyone recovers hearing from this type of disease. 

Has anyone experienced anything similar or can maybe offer some insight on what to discuss with my doctor?

0 likes, 11 replies

11 Replies

  • Posted

    Hi, this disease can detoriate quick and because the symptoms look like that of a normal ear infection it can be years before it is found. My surgeon reckons I have had this condition for 5 years. It was only when I spent a week vomiting and extreme dizziness that they decided to do scans which show ctoma. At this point there was a good chance I would go complete deaf. However, after being careful. I have regained a lot of it. I can't hear much high pitched sounds. C Toma if not treated when found can lead to extreme complications if not surgical removed. Mengistist being the main one. I recommend asking your doctor about the pros and cons of the op. But as my mum told me at the end of the day. If you have tooth ache you can remove a tooth you can remove an ear. There is always hearing aids and other such like. I recommend operating before something bad happens but that's just my opinion. At the end of the day. What do I know? I'm not a doctor I'm only 17. Quick question since your from America. How do medical practices work? Payment? Hope this helps


    • Posted

      Medical Practices are not fair in the U.S. That I can tell you. I'm not sure how the UK operates; but, in the U.S., most people pay for private insurance. Generally, you have to pay about 5 thousand dollars, for a single household indvidual, before you have full financial coverage. 

      The costs vary among insurance plans. To receive government assistance, you must have an annual income less than 20 thousand dollars per year. Those plans are paid by tax payers.

    • Posted

      That is ridiculous. In the U.K. After 18 unless you have a medical problem you have to pay for medication. £8.40 a time. I then when you get to a certain age it's free again. All surgeries and ambulance calls are free from the NHS. Some of the NHS hospitals can be awful. But when I was in theee with ctoma I couldn't fault the staff. Also there's a uni (college) down the road from said hospital so students do experience there but if they didn't have separate uniform you wouldn't know

    • Posted

      Tell me about it, the government says I make too much money for "affordable," healthcare; but, then they take 25% of my annual income. So I really don't have 5k lying around for surgeries and missed work. 

  • Posted

    As your cholesteotoma went untreated for a long time, it might have eroded more bones than JUST the hearing bones. It'll eat away the bone between your brain and ear as well as it's thin. It's already great that that didn't happen yet in your case. Did anything happen to your choclea which also is a bony structure? I did get surgery in my left ear for cholesteotoma. I cannot hear ANYTHING from my left ear since the surgery, while the Dr said he reconstructed my hearing. In 4 weeks from now I might experience an improvement, but I am not sure. In my case he also constructed another eardrum. Depending the state of the cholestotoma in your ear and how far it is, the results might differ. I'll keep you posted about my left ear and if I get any hearing back as right now I have none. Fact is, the cholesteotoma needs to be removed as it'll go to your brain in a matter of time. The sooner the better.

    • Posted

      I had hearing at the time the prosthetic was placed into my ear, it was post op that I encountered hearing loss and I mean years post-op. When I had my last hearing test i had 30% hearing in my left ear and no I am profoundly deaf. My doctor has no idea why, which is scary; to say the least. 

      The one is my right ear is my biggest concern. Hearing loss is by far my biggest nightmare. Right now I'm terrified out the potential outcome and I get a little angry that this is something I have to deal with.

      The doctor wants to do an MRI, then place the scan into a 3D model to determine the best way to perform surgery. It's the costs that are going to get me. 

    • Posted

      I had prosthetic put in twice in one ear and they worked for awhile but then came loose. My ENT says thats a problem that sometimes happens with them. I had to go the BAHA route. (Bone anchored hearing aid). They work. Some drawbacks, but I have hearing now. My c-toma ate a hole the size of a quarter in my skull.
  • Posted

    I've had c-toma in both ears with surgery removel, hearing loss, taste loss. I lost part of my skull bone and some ear bones. That was about 15 years ago. Tried inplants, hearing aids, nothing helped. 2 years ago I got bi-latteral BAHA'S and I can hear as good as I ever did. Ask your Doc about them.Almost any hearing can be restored nowadays to some degree.

  • Posted

    That's awful!! How old are you? How much hearing loss in total has occurred because of cholesteatoma?? I just signed in. I was describing my situation in fear that my 16 has the same condition! He has had extreme draining...the 1st doc . Could not see the ear drum.. did that happen to you? Swelling? The debris made it impossible. Foul smelling discharge draining out. GLOBS of white pus looking substance + pressure.. that was Saturday. Sunday passed..I was concerned. I got second opinion on monday... that other doc. cannot see an ear drum either...yet no pain ,he's not really in the past with ear infection he had pain , RUPTURES, hearing loss, dizzy, plugged..ect. he got tubes and all was well for the last two years until just days ago. The doc said he needs E.N.T but that will be a week! Dose any of this sound like what you suffered??

    • Posted

      58 now. I've lost about 80% in one and 50% in the other. I think most c-toma's are in the inner ear. E.N.T. will be the most help. They should get him on the right track. Took 7 surgeries to get me all well. But was worth it. Good luck with your son. I had some of those symptoms but like I said, i think most c-toma's are in the inner ear. GOOD LUCK!!

    • Posted

      I'm 29 and my first symptoms appeared when I was 16 in my left ear. I had yellow, green, and white discharge, that smelled awful. My ear would swell and I went to several doctors before I saw a specialist. All of those physicians would just prescribe antibiotics, which was like a band-aid; but it ended up getting worse over time (months). I ended up seeing a specialist, who knew right away what it was. 

      I've had 4 surgeries in my left ear and have profound hearing loss; so none. I can hear low level sounds, but I have no hearing in that ear. However, the specialist told me that my cholesteatoma was one of the worst he's ever seen. 

      Tubes will only put a bandaid on the problem. Cholesteatomas are mastoids within the inner ear and they grow; which will cause more damage if untreated. I can't see my doctor until November 23rd, so a week isn't that bad. I'm sure as a worried mom, it seems like a long time; but once treated properly, those risks start to diminish. How long has it been like that?

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