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Can a cholesteatoma re-occur?

Posted , 6 users are following.

LewisMills22
LewisMills22

So, around 6 years ago I was told I had a cholesteatoma quite deep inside my left ear.

I underwent 3 operations, the first was to look at the severity of it,  the second was to remove it and to reconstruct one of the bones that had been eaten away and the third was a double check to make sure it was gone. 

But 6 years have passed now and I get quite a lot of pain inside my ear after sleeping on it or going underwater. 

Everytime I go to the GP they take a look and tell me that it's a build up of wax that's causing the issue.. I have a very large collection of ear drops in the medicine cupboard 😂 

Does anybody know if it's possible that the cholesteatoma has come back? 

Or is the discomfort just a side effect of the surgery and is something that I'll just have to deal with forever? 

Thanks.

1 like, 31 replies

31 Replies

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  • joe91156
    joe91156 LewisMills22

    Posted

    Thank u for the wishes. And for the reoccurring of this it will happen again. Im now under going a ear canal down surgery. I hope ur son never gets this problem. Best wishes Joe
  • carrie52414
    carrie52414 LewisMills22

    Posted

    My son is 27 years and has been dealing with chlosteatoma since 7 years old. Had been told surgery would fix it to have it come back over and over again. His left ear is totally destroyed. Right is somewhat ok. Had had a total of 6 or 7 surgeries on the left, 4 on the right. Every now n again he still has problems but it will never go away.
    • LewisMills22
      LewisMills22 carrie52414

      Posted

      Wow, that's a long time to be dealing with it.. all the best to him with his upcoming treatment and thanks for your reply Carrie. 

  • LewisMills22
    LewisMills22

    Posted

    Quick update, 

    Payed a visit to ENT to have both of my ears cleaned and examined. 

    Seems as though all of the discomfort was coming from build up of wax which was blocking water when it was entering my ear and applying pressure on the ear drum whilst I was sleeping on it.

    I will be sure to take the necessary steps to ensure the effected area keeps clean and dry. 

    As far as any signs of cholestatoma re-growth, both ears look to be in a healthy state besides being rather enflamed after the wax removal, which was extremely uncomfortable😅

    I would like to thank every one who's posted their personal experiences and tips. It is much appreciated and I wish you all the best for your and your families treatment in the future. 

    Thanks all. 

    • joe91156
      joe91156 LewisMills22

      Posted

      That awesome congrats. I hope u never get it again. This c toma sucks lol stay well.
  • LuckyDeer
    LuckyDeer LewisMills22

    Posted

    My son will have his firs cholesteatoma surgery in the first half of July. Since there are so many patients on this thread, I wanted to ask you, what were your experiences with recovery. I'm besides myself from stress.

    Also, what were your doctor's recommendations in regards to flying? My surgeon says 2 weeks before he can be on an airplane, but I saw elsewhere a recommendation of 6 weeks. Before my son was diagnosed, we bought tickets to fly to Europe in August. Now, I'm in a pickle. Not sure what to do about the trip.

    • joe91156
      joe91156 LuckyDeer

      Posted

      Hello recovery depends on the strength of the person. I just had my 3rd one yesterday 6/13/2018. Im home and walk out the hospital with no problems. im a 43 year old man. 6vweeks before flying is about right. But check with ur doctor for verification. Hope this helped. He will be fine. Good luck
    • rachel47196
      rachel47196 LuckyDeer

      Posted

      There is a facebook group for people with Cholesteatoma. I would recommend you join. They will have advice on flying after surgery and I seem to recall some great tips for flying to make it go smoother.
    • LewisMills22
      LewisMills22 LuckyDeer

      Posted

      Hello! 

      To be honest, the experience I had wasn't really too bad. Obviously there's pain involved but the medication I had eased that. 

      I had a few follow up appointments after my second op to remove stitches from the back of my ear and another to remove the packing they had put inside my ear canal. 

      If I can remember correctly I was out of action for about 3-4 weeks after my 5 hour op. 

      When it comes to flying I have absolutely no idea, I'm afraid. 

      Hope your sons upcoming treatment goes as smoothly as mine did. And enjoy your holiday. 

    • LewisMills22
      LewisMills22 LuckyDeer

      Posted

      Ohh forgot to add.. 

      Don't stress about the operation, all you have to remember is the surgeon who's doing it has probably done a fair few ops exactly the same. Mine did a fantastic job. 

    • LuckyDeer
      LuckyDeer joe91156

      Posted

      Thank you for the info Joe. I have to look into the flying situation. The 2 weeks recommended by the surgeon seems very radical. I think the trip is not happening since we have family in 2 different contries and a lot of in-between flying is involved. It would be 4 weeks after his surgery.
    • LuckyDeer
      LuckyDeer LewisMills22

      Posted

      Thank you for the well wishes LewisMills. I'm glad your opps went smoothly. Our surgeon said he will try to remove it through the ear canal, and if he can't access all of it, he will access through the back of the ear.

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