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Cholesteatoma incurable

Posted , 4 users are following.

david08667
david08667

Hello! I had a mastoidectomy at 20 years old, 14 years later and 9 operations later I am still suffering from a cholesteatoma, the last operation I had was a tympanoplasty, but because of the scarring in my ear, the skin graft didn't take, I have been going to hospital for regular clear outs with microsuction and have tried many different creams and drops but to no avail, surgery is no longer an option, does anyone know of any other potential treatments for my condition?

0 likes, 4 replies

4 Replies

  • rob76554
    rob76554 david08667

    Posted

    What worked for me was using Flonase everyday. It’s opens the Eustachian tube, which helps the cause of cholesteatoma. You have to be religious about it and use it every morning.  After a few weeks you’ll notice a difference on your ear staying dry. Also a solution of low % isoporic alcohol mixed with boric acid, 5 drops in your ear every night. The recipe is two teaspoons of boric acid per bottle of alcohol. Good luck. 
  • julie22907
    julie22907 david08667

    Posted

    Unfortunately, they are incurable and they do return. That is why we have to be proactive and have an MRI at least every 2 years to make sure they have not returned. My lifetime was spent in surgeries, removing more and more of the cholestoma and my hearing bones and mastoid as well. 2007 my surgeon closed my ear canal after obliterating the mastoid. The disease did not return for 10 years. It is caused by excessive skin growth and can be hereditary as well. They now believe I was actually born with it already in my right ear canal, they just did know what it was back in the early 60’s!  Is there a medical reason they cannot continue removing them from your ear canal? 
  • j36023
    j36023 david08667

    Posted

    I had Mastoid surgery for cholesteatoma 11 years ago. It really bothers me that after this surgery I have been in long-term follow up with the specialist about every 4 to 6 months for microsuctions because of the build-up of dead skin layers, water accumulation, etc. For the past 4 to 5 years I have been getting a very fool odour when it builds up hence, the religious visit to my doctor to clean and perform micro suction. It is really annoying. Anyone else have dealt with this long term and build up in a different way? What it bothers me the most is the odour , and I wish I had not to visit the doctor every 4 months for this. 
    • julie22907
      julie22907 j36023

      Posted

      It sounds like you have a mastoid cavity. That is what I had for most of my life. Finally saw specialist who knew what they were doing and he was able to obliterate the mastoid and surgically sew my ear canal shut. I already had lost all the hearing so I had nothing else to lose by doing this and everything to gain such as showering and swimming again without getting those horrible ear infections. It’s the best thing I ever did. 
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