RE: Managing Cholesteatoma

[Guest guest]

Hi I started to have problems in around 1984-ish; I was about mid-way through my service in the Royal Air Force at the time, based in Germany but the military doctors (RN, RAF and Army – I saw medicos of the whole spectrum!) never actually diagnosed anything – ever. At one time ‘inverted hay-fever’ was mentioned but nothing was actually firmly diagnosed. I left the RAF at the end of my 9-year contract as by then I had been medically downgraded – deemed unfit to do my job, even though my seniors said I could do my job fine and I always got top annual assessments for doing it and was recommended for a specialist course, too, so good was I at it, yet I couldn’t get promoted because of the medical downgrading; (confused? I was!) So I returned to my home town here on the Garden Coast of Kent, where, some 9 years later (around 15 years after symptoms first started), I was finally diagnosed with Cholesteatoma; I had the surgery to remove it within just a few months of the diagnosis. So yes, I went on suffering for some years, having drops, powders, sprays, grommets, creams and tools galore put in my ears (the latter for examination of course) but this was not through being told too much that was actually wrong – more it was through ignorance/lack of knowledge on the doctors’ part; that said, we mustn’t forget there were no such things as scans back then in the 80s and early 90s. I was lucky to be passed on to the ENT surgeon who first mentioned the C’toma word – the ENT consultant I had been seeing for most of the 90s didn’t pick up on it, but when I saw one of his colleagues when my regular doctor wasn’t available one check-up appointment, he (the colleague – Dr K, to whom I’ll be forever grateful) said he thought he knew what the problem was, but he needed the opinion of his senior ENT Consultant (Mr F), whom I saw within a couple of weeks and under whose care I’ve been since. But it was Dr K who actually first saw it, so thank you Dr K! J Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Sent: 18 June 2011 13:11cholesteatoma Subject: Fw: Managing Cholesteatoma anony8107 wrote:- > After discussing the situation with the surgeon, I decided for regular> checkups and microsuction, instead of an operation. There is no real> suffering and the hearing is reasonable on that ear. The ear gets easily> blocked after each common cold, and I visit the surgeon for microsuction> after the cold is over.> > Reading this group, it looks like practically everyone chooses for surgery,> either canal wall up or down, which makes me feel an exception.> > Does anyone else chose to manage the Cholesteatoma with regular> checkup/microsuction for a long period of time?> This is the first time I've heard of anyone actively choosing this course. However, in my own case I think this happened by default ! Yes I know that sounds like nonsense, so let me explain. Before I had my mastoidectomy, I had been advised by various ENT surgeons that my ear would eventually require surgery but I was never told why; the story I kept getting was " This ear will need an operation in the future but it will announce itself when it does. " Cholesteatoma was never mentioned and no-one ever explained that I had a condition that would gradually get worse. In the days before the world-wide web there was no real way to check on any of this information,so I had many years of microsuction etc. without being any the wiser. It was only when I changed ENTs in 1998/9 or so that I was positively told that the time had come for surgery - and then it was on the other ear, not the one which had been monitored for all those years ! I wonder if any other UK patients have similar stories ?? ,Milton Keynes, UK

[Guest guest]

Kazzy wrote :->I was lucky to be passed on to the ENT>surgeon who first mentioned the C'toma

>word - the ENT consultant I had been>seeing for most of the 90s didn't pick up

>on it, but when I saw one of his colleagues when

>my regular doctor wasn't available one check-up

>appointment, he (the colleague - Dr K, to whom I'll

>be forever grateful) said he thought>he knew what the problem was, but he needed the

>opinion of his senior ENT Consultant (Mr F), whom

>I saw within a couple of weeks and under whose care>I've been since. But it was Dr K who actually first saw

>it, so thank you Dr K!

Hmm, Mr F. eh ? Would that be Fairley by any chance ?

,

Milton Keynes,

UK

[Guest guest]

Hi >> Hmm, Mr F. eh ? Would that be Fairley by any chance ? << Yes, by chance it would ;-) Have you heard of him? Do you know him? I know you’re up in MK – that’s too far away for a consultation with Mr F where he’s based now, but perhaps he was up there before moving south? I’m guessing, of course LOL! Mr F is a wonderful man – a gentleman, a really good doctor/consultant who looks after his patients – at least, he looks after this one and has done for many years now. I wouldn’t change him for the world, aside from wishing I didn’t need an ear doctor at all, of course! Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of Sent: 21 June 2011 16:46cholesteatoma Subject: Re: Managing Cholesteatoma Kazzy wrote :->I was lucky to be passed on to the ENT>surgeon who first mentioned the C'toma >word - the ENT consultant I had been>seeing for most of the 90s didn't pick up >on it, but when I saw one of his colleagues when >my regular doctor wasn't available one check-up>appointment, he (the colleague - Dr K, to whom I'll>be forever grateful) said he thought>he knew what the problem was, but he needed the >opinion of his senior ENT Consultant (Mr F), whom >I saw within a couple of weeks and under whose care>I've been since. But it was Dr K who actually first saw>it, so thank you Dr K! Hmm, Mr F. eh ? Would that be Fairley by any chance ? ,Milton Keynes,UK

[Guest guest]

Kazzy wrote :-

>> Hmm, Mr F. eh ? Would that be Fairley by any chance ? <<

>Yes, by chance it would ;-) Have you heard of him?

>Do you know him? I know you're up in MK - that's too

>far away for a consultation with Mr F where he's

>based now, but perhaps he was up there before moving

>south? I'm guessing, of course LOL!

Kazzy,

No I don't actually know Mr Fairley but he does have an extremely

informative web site at http://www.entkent.com and I've spent a couple of

evenings sifting my way through that.

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[Guest guest]

Hi Ahhh, yes, his website – as you say, very informative – an excellent resource; like you I’ve spent many an hour reading and trying to digest the information there. He’s a very informed and renowned surgeon. As my ENT doctor, he always makes sure I have heard and understood what he is saying and I for one appreciate that. Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of biffo1963@...Sent: 22 June 2011 20:27cholesteatoma Subject: Re: Managing Cholesteatoma Kazzy wrote :->> Hmm, Mr F. eh ? Would that be Fairley by any chance ? <<>Yes, by chance it would ;-) Have you heard of him?>Do you know him? I know you're up in MK - that's too>far away for a consultation with Mr F where he's>based now, but perhaps he was up there before moving>south? I'm guessing, of course LOL!Kazzy,No I don't actually know Mr Fairley but he does have an extremelyinformative web site at http://www.entkent.com and I've spent a couple ofevenings sifting my way through that.-----------------------------------------Planet Ink Club is a great way to save money and help the environment.Join today (http://www.planetinkclub.com)This message has been scanned by Supanet for viruses and dangerous content using ClamAV and SpamAssassin.