Patientsʼ opinions on hearing preserving cholesteatoma surgery


A letter from Dr Melissa Hubbard

 

"Well what can we say.

When we first realised Millie had an extensive cholesteatoma we felt very guilty at having missed it particularly since we had both done ENT house jobs and are now both consultants.

I was filled with the dread of her having to put up with a lifetime of having an infected mastoid cavity (we were offered mastoid clearance here) as we both remember only to well the hours we spent as housemen hoovering out the midle ears of these poor souls. I knew even back then that most patients eventually give up on the pleasures of swimming and hairwashing with abandon as the consequences are so bothersome.

Before she got her diagnosis given what I see in paediatrics I would have said that not being able to swim or wash your own hair in the bath was a minor inconvenience but at 15 in a family that holidays often with summer swimming, canoeuing and sailing a big part of what we do - it dawned on me quite how debilitating having a mastoid cavity would be – and it would be for life.

What would she do as she watches her brothers go off to the water park or at the beach with her university friends and who would teach her own children to swim when she had them?

So we set off on a journey which started by doing a lot of research. We even considered LA and Hong Kong but when we asked people in the know (and we asked a lot of people) – all roads led to you. We feel extremely lucky that our contacts and knowledge allowed us to find you. It is one of the most important decisions we have made for any of our children so far – its import far outweighing in our minds the discussions and decisions about their education.

And the proof of the pudding is in the eating as they say.

After 2 years of washing her hair over the sink ( not always easy in an incalcitrant teenager) and having to keep the ear scrupulously dry, not swimming and some missed holidays due to not being able to fly we have a result we could only ever have dreamed of. Her disease was extensive and in others hands recurrence would have been in the region of 30% but in yours at first re-op there was no disease.

For Millie that was wonderful news but to then come back to follow up and discover that the reconstruction done at the time of second surgery has restored her hearing is nothing short of miraculous. I said "normal hearing" over and over again all the way back to Manchester. I can't say the journey and having surgery so far from home was always easy but knowing what I know now we would have travelled to Australia (and back) to have you work your miracles.

As a paediatrician whose patients would probably be offered a straight mastoid cavity with all the lifetime complications that brings for me the experience is just tinged with a bit of sadness that children from around the country are not all referred to you, especially since all the ENT consultants we asked ( at least 5 from as many centres – both paediatric and adult professors - all recommended you).

You shouldn't have to be doctors to access the best care.

Alan and I would like to send a very heartfelt thanks to you for the extraordinary work you have done for our daughter. Millie was overjoyed to be back in control of her own hair washing. We have just returned from holiday in Dubai to celebrate and you will see from the photos I will send that being normal and keeping up with your brothers is truly a gift and that you have given her that back freedom.

A million thankyou's - the country deserves to hear more about you so please don't hesitate to use this mail however it may help to spread the word."

Dr Melissa Hubbard
Mr Alan Hubbard