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What follow-up ?!?!!

Posted , 5 users are following.

Sam798
Sam798

I have a 15 year old son who was diagnosed with cholesteatoma when he was 8 and has had recurrence of the disease also.  I was just wondering what follow-up other sufferers are offered?  I am finding myself fighting for scans for my son, even though the last recurrence was only picked up by scan - they were looking at doing reconstruction, he had no signs that the disease was back, I keep being told they won't scan unless it is clinically required.  Well it wasn't clinically required last time!  They were as surprised as us to find a regrowth.  His Professor agrees in an 'ideal world' yearly scans should be done, but just tells me 'we don't live in an ideal world'.  Surely it's safer and cheaper to scan yearly than to clear up with surgery after a recurrence?  How is it where you live?

1 like, 7 replies

7 Replies

  • caz01
    caz01 Sam798

    Posted

    My 12 year old son had surgery last year at Great Ormond Street and a second look/reconstructive surgery 6 months later in July 2013.  After returning later in October for a check up we were told we would not need a follow up appointment until Octobert this year.  There was no mention of a scan either.  My son was seen by an ENT 'specialist' who only picked up he had a perforated ear drum.  It was on our return to discuss an operation to repair the drum that the second specialist detected the cholesteatoma.  After some confusion my son had a CT scan but his consultant had said it was not necessary and seemed quite annoyed he had been sent for one.  All to do with budgets!!  It really is a worry though as is on your mind as to if its come back.
    • Sam798
      Sam798 caz01

      Posted

      It is all to do with budgets I'm sure, which shouldn't be the case when you're talking health care!  It is a constant worry, especially as statistics seem to show that there is a 50% chance of recurrence.  Regular scanning I am sure is the way forward with this disease - the earlier it's caught the less damage it causes and if an early diagnosis is made then regular scanning would surely save money on more extensive surgeries in the long run?  I am going to keep fighting for my son to have scans, but feel a brick wall each time I meet with his Consultant - all he says is that my son is fine, no signs of recurrence, scan not clinically required.  The last recurrence he had, there were no outward signs, no infections, no pain, they were looking at doing some reconstruction and so scanned to see what was left in his ear, discovered a regrowth.  He now can't have any reconstructive surgery due to there being nothing left to anchor anything to inside his ear.  Good luck with your son.
  • guest1
    guest1 Sam798

    Posted

    Hi Sam798,

    I was diagnosed with cholesteatoma 11 years ago after a CT scan.  After an operation to remove the cholesteatoma I had a follow up op' (mastoidectomy) a year later (normal procedure) to check if the condition had come back.  One small part had grown back so was removed during this op'.  Another year later another op' to see if all traces had gone, succesfull!  The following 8 years I visited my specialist annually and he looked down my ear canal to inspect the ear drum to see any signs that something was going wrong.  He did notice in the latter that my ear drum appeared to be sucked backwards, and realised my eustachian tube on this side was probably faulty causing vacuum behind ear drum - hence sucking it back.  May just say at this point my specialist noticed this whereas his assistants didn't - I regard him as an outstanding ear specialist.  I was then sent for an MRI that confirmed another cholesteatoma had been sucked into formation.  Since then I've had another op' and the eustachian tube plugged and so far no problems.  I have MRI scan later this year (a year after my most recent op) to monitor if any skin (cholesteatoma) cells have grown back.  The MRI scanner at my hospital is fairly new & modern and due to its resolution can detect small skin cells, the older MRI's don't which is why CT's are generally used.  Hope this helps - SteveM.

    • Sam798
      Sam798 guest1

      Posted

      The MRI is really the best way to go I think, CT scan on my son only detected 'something suspicious' whereas MRI confirmed it exactly, and they have a new program at our hospital which specialises in inner ear MRI's apparently.  I do think it's crazy that there doesn't seem to be a typical follow-up for this disease.  When I was last debating with my son's Consultant for him to have another MRI, he agreed that in an ideal world annual MRI's for cholesteatoma patients would be his wish, but we don't live in an ideal world he said.  I do wonder what the cost of surgery after finding a developed cholesteama compared to an annual MRI would be?  At my son's last check up the Consultant would only agree to discuss the possibility of an MRI in a years time - which will then be over 2 years since his last one.  Scary stuff when you think the last scan he had wasn't 'clinically required', there were no outwards signs the disease had returned, they were looking at possible reconstruction surgery at that time.  This isn't possible for my son now as he doesn't have enough left in his ear to anchor any kind of device to.  Annual MRI's would be a welcome relief for many sufferers I'm sure!
  • catherine68878
    catherine68878 Sam798

    Posted

    Hi my son is 14 and was first operated on at 10. Now his consultant is really keen to operate instead of a scan. I'm not going along with  it. We are in Canterbury, I would like him referred to GOSH in London. I can only try !?

     

    • Sam798
      Sam798 catherine68878

      Posted

      Hi, I feel they should always scan before surgery too - they need a clear picture of what they are dealing with to be able to decide how's best to approach the removal surely?

      Go back to your GP - you should be offered a choice throughout the UK of Clinics who can see your son - your choice as to where he is seen, and a second opinion should always be possible.

      Good luck!!

  • karenskip
    karenskip Sam798

    Posted

    Hi, I had cholesteatoma surgery just over 2 years ago and had an mri after about 18 months but today been to my Ent appointment and was told mri scans are only done every 5 years or so now.
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