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How long should we have to wait for surgery?

(4 Posts)
syd Sun 02-Oct-11 22:33:33

DS, age 9, has a cholesteatoma - it's a disease of the ear which has overtaken most of the cavity behind the ear drum, eroded much of the bone between there and the honeycomb area of bones behind the ear, which is also full of the disease.

We had emergency appointments as he'd progressed from a 'pea' like structure I could see with my naked eye in the ear canal, to a lozenge shaped, uneven textured growth 3 weeks later, to a hideous tuber type growth 18 days later. There was significant infection - black basically - on the eardrum which they haven't managed to shift.

So we got sent for a CT scan, which DS thought was a hoot!, then he was struggling with dizziness, but within a week we were back for audiology tests - lost all but a small band of hearing in teh mid range in teh affected ear - and to see the surgeon.

He will do surgery to remove as much of the disease as possible followed up by second op six to twelve months later to check on teh progress of any remaining disease and rebuild some of the eroded bone. His hearing won't get any worse and hopefully will be much improved by this second op.

Okay, so all horrible, but all progressing. But I had to chase a week later - last Monday - to see what we were looking at in terms of dates for surgery - bearing in mind we live in one of the two richest primary healthcare trusts in the country... And the surgeon only operates once every two weeks for an afternoon at our local hospital so the soonest they can operate is the 9 January - they just confirmed on Friday. I'm traumatised at the thought of waiting so long. The boy is okay in himself although he's had one day of terrible room spins this week, but I'm terrified as the disease has progressed and changed so rapidly from July to the end of August and now they want us to wait til January.

Anyone know anything about this and what might be reasonable to wait or do I just continue to chase and harrass people?

Any advice much much appreciated.

saggarmakersbottomknocker Mon 03-Oct-11 07:34:50

Does the surgeon operate more often at another hospital? Could you go there and be seen earlier?

I suppose the question you need to ask is 'Is it safe to wait this long?'

You must be worried sad

DeWe Mon 03-Oct-11 10:08:44

Ask if there might be a cancellation?

Push that it's effecting him attending school, which I'm sure it is.
Ask if there's another hospital with spaces.

syd Mon 03-Oct-11 11:54:40

Thanks - I'll get on the phone!

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