Follow-up after discovery of cholesteatoma

Posted , 4 users are following.

My son, who is turning 15 years old soon, has had problems with his ears virtually since birth and has now had 2 cholesteatomas removed. My question is, his consultant has put him on annual check-up's now, and at our last meeting last week, refuses to send my son for a CT or MRI scan - he just kept telling me it wasn't clinically needed and they don't routinely do them. My confusion comes as the last cholesteatoma that my son had removed was found following a CT followed by an MRI to check what was going on for the purposes of possible implant surgery, not because they had found any evidence of re-growth. Surely a yearly CT or MRI would put everyone's mind at rest? Was just curious what kind of follow-up other people were having. Thanks

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5 Replies

  • Posted

    My son, like yours has suffered with ear problems since birth and was given a CT scan after consultant found cholesteatoma. He had first surger at GOSH in January to remove it and second look surgery last week, where thankfully there was no recurrent disease. After initial CT scan a follow up was never mentioned. We were just told that he would have to have a second look 6-9 months after first surger and again 6-9 months later if any cholesteatoma had been found. When you say annual check ups is he having another operation after a year? It is an awful thing to worry about. My son is 11 and as I say has just come home from GOSH and now faces all summer with no swimming etc, I do feel for them when they are so young x
  • Posted

    I have been on annual check ups for several years following removal of a cholesteatoma. Recently the hospital I visit has updated its MRI scanner which can detect a lot smaller particule sizes of skin which the old systems were unable to (hence why MRI scans for cholesteatoma growths weren't suitable). Unfortunately for me it has detected another cholesteatoma but well before any of the discomforts have developed. I would mention this to your specialist as I'm sure more hospitals are updating their MRI scanners for better ones.

    After my next op' very shortly I will be checked annually for a time for using the MRI to check all is clear.

    Hope this helps and thoughts are with you and your son.

  • Posted

    Thanks for your response caz01. My son sees his consultant once a year, I'm not sure how long this will go on for, but he will have to visit the aural care clinic every 3-6 months for the rest of his life. We have had to buy professionally made ear plugs for him too as he cannot get water in his ears for the rest of his life either, and as he is still growing, these have to be bought annually. Cholesteatomas have a 50% risk of recurring in children, and this can happen after years of being clear, so follow-up is essential. I am in the process of still fighting with the consultant about scans as follow-up - I explained how I felt to the GP, who wrote to the consultant but didn't get a reply, we just got another appointment to see him drop on the doormat. I called his secretary to try and explain, but it seems we are just going to have attend an outpatient appointment again. I know the NHS are trying to cut back on costs, but surely one scan a year would work out cheaper than extensive surgery in the future. I did hear of a young boy who had been clear of the disease for 5 years when it came back again - follow-up and regular scans can be the only way forward I feel
  • Posted

    Thanks for your reply Stevern. My son attends QMC and they do have an updated scan done via the MRI specialised for the job I understand, and this was used to clarify the recurrence last time as it wasn't clear enough on the CT scan that was done. It just seems to make sense to me for annual MRI checks, they are supposed to be less harmful as regular CT's and would pick up any new growth very early, and so surely make removal easier?

    It really feels like it's been an uphill battle with this, and in September we have another appointment with the consultant to argue the case once again. All I can find searching the www is the types of scans that work best to pick up this disease, I can't seem to find any professional type body suggesting the best way to follow-up long term. I have thought about going for a second opinion, but we see the Professor in ENT who is supposed to have an interest in cholesteatoma! But, I will keep fighting for my son and against cholesteatoma!

  • Posted

    Hello, I'm 18 and it has been almost a year since I had my cholesteatoma removed. I had a very large c'toma which destroyed all of my hearing bones and had spread into most of my mastoid and nearly destroyed my facial nerve. However, I have only received check up's via the ENT clinic where my consultant checks my ear using a microscope. Has your son got a cavity as this makes it a lot easier to check for the reoccurrence of the disease? Hope all is going well for you now,

    Best wish


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