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Operation to remove a cholesteatoma

Posted , 4 users are following.

sarah63524
sarah63524

I have had ear issues since the age of 5 (I am now 41) and had a small cholesteatoma removed nine years ago. I wasn't scheduled for any follow up checks with my ENT surgeon. I have been to my GP every year since with ear infections. Three weeks ago my ear started smelling and bleeding. My GP referred me for a CT scan that showed a 2cm cholesteatoma that has gnawed into the cranium and mastoid on the left and a potential small cholesteatoma on the right. I had exploratory surgery yesterday and my ENT surgeon confirmed the right is ok but the left needs to be operated on. My hearing loss is minimal at this stage and I don't have any pain. But this "thing" is in my ear and moving toward my brain. In two weeks we are leaving with our children on a two-month camping trip around Australia. We have been planning this trip for more than a year. I would love your thoughts on whether delaying surgery for 10 weeks is a good idea or whether in your experience I should schedule the operation ASAP? My ENT surgeon says there is some risk but is happy for me to go. If I was a public patient then I would have to wait 1 or 2 years for the surgery. Thank you so much for sharing all your stories that have helped me so much in my quest for information....

1 like, 6 replies

6 Replies

  • Court_Jester
    Court_Jester sarah63524

    Posted

    Dear Sarah,

    In your position I would defiitely consider postponing your camping trip; which would be disappointing I know, but having done a lot of motorhoming all over Australia, I do know that emergency medical assistance when travelling 'outback' is not always easy to find.  I recall a nightmare trip down the Centre, looking for a Doctor, and would not like to repeat that experience!

    You're fortunate to be able to organise surgery so promptly ... as a 'Public' patient, I'm still waiting to be put onto a waiting list!

    I wish you well, whatever your choice.  Some of my happiest memories are from our various trips around and about Australia.  Oh!  Of course, I'm 'assuming' you're in Australia.  If elsewhere, I cannot advise you.

  • Court_Jester
    Court_Jester sarah63524

    Posted

    Ahah!  On re-reading your post, of course you're in Australia.  Mmmm.  I'd definitely look into either postponing or shortening your planned trip.
    • Court_Jester
      Court_Jester

      Posted

      Sarah, I can't stop thinking about you!

      My initial reaction was a bit of jealousy, because you've received attention to your problem, whilst I'm still in limbo.

      I've had a quite morning, playing scrabble on facebook, and my mind keeps going back to your dilemma.

      If you go ahead with your trip, you'll have memories to carry with you through the time in hospital.

      Have you done much of this sort of travelling in the past?

      I also think that it might be a bit risky to take off on a camping trip AFTER surgery ... so you'd need to delay for a while before heading into the wild outback.

      What does your family think?  Are their needs [school/jobs/other commitments] time-critical?

      I can't wait to see what others think about your dilemma, and will look forward to reading your decision.

      Whatever you decide ... think positive!

       

    • Court_Jester
      Court_Jester

      Posted

      Dyslexic fingers strike again.  'A QUIET morning'.  [Dontcha hate seeing a typos just after you hit 'enter'?

       

  • caz01
    caz01 sarah63524

    Posted

    Hi Sarah

    Sorry to hear about all your troubles.  Tricky one!  My son was initially being operated on at the end of July a few years ago then after much discussion (long story!) his consultant deceided to send him to GOSH London for his surgery.  He was not operated on there until end of January the following year and there seemed to be no concern for the delay.  I imagine it's all down to the individual case, how advanced the Cholesteatoma is etc.  My son's had eaten through the three small hearing bones in his ear by the time he had his operation.  There was never a huge urgency to get him in for his operation though.  I really feel for you and the dilema you are in.  xx

  • gabygaby
    gabygaby sarah63524

    Posted

    Hi Sarah,

    difficult one but with my experience i would say go for the op and re schedule your trip.

    Just over a year ago i had a right modified radical mastoidectomy

    and meataplastry and removal of cholesteatoma.

    This op was done as the previous year  April 2013 i ended up with a right temporal brain abscess and crainiotomy and still now they are not sure if this was caused from my years of ear infections.

    I ended up with still ear infection after my crainiotomy/abscess so eventually was referrred to ENT after months of still not knowing.It was by going to a private ENT and swabs taken of my ear infection i was referred to the hospital in the Dec 2013 on iv antibiotics for a week and scheduled for ear op in the Feb 2014.In fact a DR came out from the UK as no dr's in Cyprus had the experience for this type of op!!!!

    So me personally would tell you to go for the op...

     

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