My son has been diagnosed with c-toma

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It appears it is an acquired c-toma as it is small, MRI indicates 5mm. Our hospital suspects we will not have the op for another year due to its size.

The more research I do the more I see people saying that the scans are inaccurate and often

the c-toma is larger once they start operating. So is this because it grows quickly and if so does it grow quicker in children then adults or is it because the scans are not clear enough?

Perhaps the above the question is too complicated and in some ways I'm just getting my concerns out in the open!

Have you waited with the NHS this long or did you choose to push for an earlier op?

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8 Replies

  • Posted

    Hi when my son was diagnosed in May/June?? 2012 he was then booked in for op for August. I think he could have been seen sooner but we requested August becaused of his last bit of time at primary school (we didn't want him to miss) and we were told there was no urgency. After lots of worry and discussions re canal wall up/canal wall down procedures we were then referred to Great Ormond Street so he ended up having his operations there in January and July 2013. There was no worry about it "getting out of control" It is very scary when you read up but I think it is very slow growning so that is why there is usually no real urgency. I think it is better staying away from swimming and trying to keep the ear dry as I think when infected it causes more problems. Good luck and if you need any more advice re the two different approaches please get in touch. Our first consultant didn't tell us anything initially about the two approaches until I researched, so do ask them. Take care, Caroline
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  • Posted

    Thanks Caroline.

    Yes I'd been reading up on canal up/down. Are you on Facebook to discuss further?

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  • Posted

    Hello, my four year old has just had his second c'toma removed following initial diagnosis of both sides in August 2013. In both cases it had grown very much more rapidly than predicted. Apparently this is more common in small children. We received conflicting advice from the surgeons we spoke to about approach but thank god decided to push on for quicker operations. Incidentally when looking at surgery options I would suggest googling 'cholesteatoma laser surgery'.

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  • Posted

    Macs

    Thanks for the sign post re laser surgery. Did you look into it? Any personal thoughts?

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  • Posted

    Hello, yes we looked into it extensively and after getting several opinions & agonising long and hard went with that option. Excellent outcomes so far despite very tricky c'tomas. Preservation of hearing far better than I had possibly hoped for - above average despite only thin sliver of hearing bone left as laser did not damage bone, only destroyed the surrounding growth. However, that is only our experience - I guess there may be other views out there...
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  • Posted

    Make sure the prevenative care is good - microsuctioning (syringing makes things worse) and custom made swim moulds for showing etc. - good luck
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  • Posted

    Trelissa - interesting re microsuctioning - please tell me more. As it is my son dislikes it and for the first visit last week in 3 months it was not given to him.

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  • Posted

    I used to call it hoovering out the ear unti l was given the proper term. My daughter does not like this being done, but experiecne has told her that she feels so much better when it has been. I hold her hand and our eyes remain locked, whilst I talk to her. How much it hurts really does depend on who does it. Where I go Rhonnies specialist takes great care, but the ENT nurse is even better as he has more experience at it. Instead of using water to swish the ears clean, which obviously creates the wet conditions that enhance ear problems. The first hospital she attended did not have a microsuction machine so the audiologist used syringing. Her ears got worst and worse until the ear infection seemed permenant. She was then sent to a hospital with an ENT specialist department where they had two. This was nothing less than a revelation, it removed so much gunk, that finally the specialist could actually see what was going on. That was when she had the CT scan and then the MRI. I regard this was one of her main turning points, her ears stopped smelling and she no loinger had conductive hearing loss (admittedly syringing removes the conductive hearing loss also). Despite being twenty she has a young childs ear canal and eustachian tube so getting this right is so important for her. The thing that is most importtant, and you will know this, is that when you get a troublematic area wet, then it creates the perfect space for the bad guys to come in and reinfect. If you are concerned about how your child will react to it, some parents take nintendo games etc to distract them. If it was not offered it may be that your hospital does not have one, and you need to have access to one, so you should ask for a hopsital that has a specialist ENT department
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