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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

    Hi lewis i had 2 surgery and another coming up this Wednesday. Yes this Disease will always come back. I had my 1st surgery about 10 years and the 2nd one 1 year later. Make sure u use ear plugs before u go swing. And try to keep it dry.
    • LewisMills22
      LewisMills22 joe91156

      Posted

      Hi joe, 

      When you say always come back does that mean everyone who's suffered with it in the past will definitely get it again? 

      And thank you I will be sure to keep the effected area dry in future 😊

  • rachel47196
    rachel47196 LewisMills22

    Posted

    Hi! This is to finish my earlier communication. Yes, they often come back because it can be hard to remove it all due to its location and if any is left there is over a 50% chance it will grow back. It is pretty common for people to get yearly MRI / CT scan to check for new growth. If you have chronic ear infections that antibiotics don't seem to really handle, also if the discharge is really foul smelling those are some strong indicators that it may be back. I would get on the phone with the office of the specialist that did your surgery. Two resources I can recommend are a facebook group for Cholesteatoma - just put the term in the facebook search bar and also a website called vestibular.org   Good luck!

    • LewisMills22
      LewisMills22 rachel47196

      Posted

      Hi Rachel, thanks for your reply.

      I've been in touch with my GP who has now referred me to hospital for a checkup. 

      Thankfully though I haven't had any of the symptoms you have mentioned there so fingers crossed it's just a minor issue. 

  • carol02333
    carol02333 LewisMills22

    Posted

    Yes, c-toma can grow again, especially if all of the cells were not removed during your surgery.  My husband had a re-occurance after his first surgery, and it is now exteriorized.  Our youngest son also had c-toma.  His surgeon was meticulous and kept him on the table for over 4 hours.  Our son lost all 3 of the hearing bones and a sizeable portion of the mastoid.  He has major hearing loss on that side, but absolutely no regrowth.  We were told that he must continue to see an ENT at least yearly to ensure no regrowth.  Right now we see our ENT every 6 months.
    • LewisMills22
      LewisMills22 carol02333

      Posted

      Hello Carol, 

      Thanks for answering my question.

      Wow that's unfortunate, I hope you're family are well. 

      The second surgery I underwent was 5 hours long so hopefully he did a good enough job the first time. 

      Is it hereditary then? Would hate to think that my son could get it as it is a rough time. 

    • carol02333
      carol02333 LewisMills22

      Posted

      No, It's not hereditary. That was our first question to our boy's surgeon.

      Don had a lot of ear infections as a toddler. We live in Florida and had a pool, so his ear was constantly wet.

      Just be watchful over any kind of ear infection, especially if there is a discharge.

      Our original ENT assumed he had a perfed eardrum. The eardrum had actually retracted. Our surgeon took one peek and knew it was c-toma. It's been 3 years post op and no regrowth but he had a radical mastoidectomy canal wall down procedure.

    • joe91156
      joe91156 carol02333

      Posted

      Hi ! Carol im 43 and uder going an ear canal down this Wednesday. How is your son doing and is there any concern i should be worried about . This is going to be my 3rd surgery. I will be in university of miama. Again.
    • carol02333
      carol02333 joe91156

      Posted

      I think you will be shocked at the changes in the technology. It really helps with your recovery time. You may want to borrow a cane if you don't have one as dizziness can be bad for the first couple of days.

      The worst part for my son was the ride home. He was a little guy, so I sat in the back seat and held his head up. We live about an hour away from Pensacola, and it was all highway driving.

      Definitely make sure that you have the pain meds ready. We were given a script for liquid Lortab and ended up going to a local compounding pharmacy.

      My son was back to school within 4 days of the surgery, so recovery is pretty quick.

      Almost forgot...button down shirts will be your best friend for quite a while.

      Good luck with your surgery. I hope everything goes well for you.

    • joe91156
      joe91156 carol02333

      Posted

      Thank you for the reply. Unfortunately im allergic to pain meds. And i didnt take them the last two times. Pain doesn't bother me as much as most. I was wondering if there was any thing i should be concerned about with the ear canal down. Does he get dizzy at all or does he live a normally life. The doctor telling me there will be a large hole that will permanently stay. And my life will have a lot of changes. Any input would be great. Thanks again for the reply.

    • carol02333
      carol02333 joe91156

      Posted

      He does get dizzy occasionally, but it is not enough to stop him from doing things. His eardrum is intact, so I know that helps.

      The ear canal is much larger than his non affected ear. It's not really noticeable unless you stare at it. There was some swelling after the surgery which made his ear protrude for about 6 months.

      There have been a few somewhat minor changes to his lifestyle. We no longer let him swim without an earplugs when we go to the beach. He is seen about every 6 months by the ENT. His hearing is definitely gone on the bad side, but his good ear compensates. Due to the erosion of the hearing bones and loss of most of the mastoid, he was not a candidate for prosthetics.

    • joe91156
      joe91156 carol02333

      Posted

      Thank you Carol. And im happy to hear he is still doing what a kid should do. Unfortunately I like to skydive and ride motorcycles. So im thinking that this is coming to an end. But I wont ever give up doing what i love. THANK YOU VERY MUCH FOR SHINNING A LIGHT ON THINGS FOR ME. HOPE ALL STAYS WELL WITH YOUR FAMILY.
    • carol02333
      carol02333 joe91156

      Posted

      I don't think motorcycling will be a problem unless you do get the dizzy spells. My husband also had the surgery done in 1989 and again in 1992. He rode until we lost my brother in an accident. My hubby was a flight engineer on Hueys and the Blackhawk for another 6 years after surgery. Controlled descents don't bother him. He jumped for the first time as a tandem when he turned 50. He loved it and wants to try it again with more canopy time. Don't let this disease destroy your livelihoods!

      If you do get the dizzy spells, meclazine helps. It's the same stuff that's in Dramamine.

    • joe91156
      joe91156 carol02333

      Posted

      Thats great to know. Sounds to me he has amazing wife. I must say u brought so much hope and comfort to this surgery for me. I really appreciate the feed back. Keep on flying hubby. And I will check in after my surgery. Once again Carol THANK YOU😊

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