Waiting list for cholesteatoma operation

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For any sufferers of the disease, how long did you have to wait to receive surgery to treat it? I've been on a waiting list for almost 6 months now and I feel like this is longer than the average time to wait due to the seriousness of the condition , I really appreciate any answers as I have had real difficulty finding information about it on the internet

Thank you smile

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  • Posted

    naybb, Here in Australia, I've also been waiting six months since diagnosis.  My GP has tried 3 ENT surgeons, none of whom will accept a 'public' patient.  When I first made enquiries I was told I would be waiting at least 12 months before seeing an ENT.  Now my GP thinks I should pay a 'gap fee' to get an appointment to see an ENT to discover just what we're dealing with [I had an MRI 6 months ago] so I guess we'll need another MRI to check on progress either before or after seeing an ENT.  I'm not holding my breath.  At least I'm in no pain.  Whereabouts are you?
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    • Posted

      Hi , thanks for your answer smile I'm in the UK and currently with the NHS , I am fed up of waiting now and its potentially going to disrupt my plans to start university, which is meant to commence in September but now I've been told that we should expect an operation date around that time...(although they do not care about your circumstance so not much I can do) I don't think going private is an option as its way too costly. My condition is deteriorating with hearing getting worse , ringing in ears and on and off pain , they don't seem to be taking this into consideration sad 12 months is a ridiculous amount of time, have you been suffering any other symptoms? I've also like you been wondering whether I should have another MRI done
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    • Posted

      Hi,  My Mom was English, and when she went 'back home' in the 50's for a holiday, she was horrified to learn that even though she now had an Australian Passport, and had lived here for over 40 years, she was still entitled to use the British NHS.  Mom was very impressed with the NHS Service, but refused to 'abuse' the system by taking part as she thought it was unfair to residents.  It seems a shame to postpone your plans for Uni, while still unsure of a surgery date.  Your Career is important.

      I do understand your situation, and have been through all the same symptoms.  Firstly tinnitus before I began to lose my hearing ... that was way back in the 90's.  I coped with that by imagining that our noisy Cicadas were singing all year round.  When my hearing started to fail, a GP declared 'You have the largest congregation of wax I've ever seen'.  I asked were they all singing 'Bringing in the Sheaves' ... It took three uncomfortable sessions for him to remove that.  No follow up.  Then I had a 'weepy' ear infection which dragged on for ages. The GP declared 'Oh you must have had a burst eardrum' and did nothing about it.  I got a hearing aid, which was never much help, and after years of dissatisfaction I was told the only aid that would help me would cost $9,750 ... way out of my league.  Last year I found Australian Hearing could offer me a good hearing aid for $7,500 ... still too dear, so settled for a 'cheaper' version at $3,750.  The help it gives me is minimal improvement on the previous one..  However, the Audiologist who I consulted for the fitting, did a very very thorough test and recommended an MRI ... whereupon the Cholesteatoma was discovered.  I am now 78 years old.  I don't see me getting an operation any time soon, and have resigned myself to the fact  It would seem that ENT Surgeons are pretty thin on the ground and cannot cope with the volume of hearing impaired sufferers.  In your shoes, I'd be making a bit more noise and fuss.  It would seem that only the loud complainers get heard these days.  Good luck!  And keep your dreams of University alive..

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    • Posted

      Your situation is unfortunate, I really do hope that you receive treatment. Have you thought about claiming some sort of compensation? It seems as though they have been pretty neglecteful when it came to referring, diagnosing, etc. and caused you unnecessary amounts of pain. I feel like this condition is overlooked as it takes a specialist to recognise the signs, I went through a similar situation where I was repeatedly sent away, misdiagnosed and given wrong medication, (one of which actually triggered an infection) by several different doctors until I was finally referred. Its unfortunate and yet I still don't feel as though I am being promptly treated and as a patient being prioritised over non urgant cases . I have been trying to get in touch with the consultants secretary but its virtually impossible as it goes to voicemail each time but I will keep trying and I definatly will not give up my unitversity plans even if it means compromising. All the best to you and I hope you receive treatment very soon.
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    • Posted

      Compensation hasn't entered my mind.  My Audiologist alerted us to the condition during a hearing test, [who also happens to be a fully-qualified ENT Surgeon, but comes from another country, and presumably is not yet 'permitted' to operate here.  He has done his level best.

      My GP has tried three ENT Surgeons, and not one of them will accept a Public patient.  He has at least managed to secure someone who will, if paid the 'gap' fee, at least do a consultation.  My GP says:  "You need to know just what you're dealing with."  [Yea Verily I say!]  There must be hundreds of other patients, no doubt younger than myself, who desperately need treatment as well.

      Truly, my situation is not pressing, urgent, or desperate.  At 78 I'll be lucky to live long enough to face surgery.

      Your situation is very different.  You have a promising career ahead of you.  I hope and pray that you'll find help soon.

      I agree ... trying to speak personally with anyone is impossible.  I tried phoning the ENT Department when I [misguidedly] thought I needed to make an appointment myself.  It took a whole morning, making calls every 3 to 5 minutes, to get past a recorded message, and then I was rudely informed.  "Don't call us, we'll call you."  and "Don't expect anything to happen any time soon, it could be 12 months before you get onto a waiting list!"

       

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  • Posted

    Hi there, I believe there is a 12 week max recommended waiting time for surgery following diagnosis - that's what I was told in relation to my son. So not sure why you would still be waiting after 6 months. Quick action is really important as you are probably aware. Sounds like it's time to jump up and down! FYI there are two good Cholesteatoma Facebook groups which are well worth joining. Good luck getting your surgery quickly. Ps we ended up going privately. Ouch.
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    • Posted

      Hi, I've read about the 12 thing, and apparently that's for non urgent cases as well, given the condition is quite serious I think it should really be an urgant case now! If you don't mind me asking roughly how much did you pay for private treatment for your son? Also slightly wary of going private as I have to have a further operation on my other ear as they are both affected so I'd have to end up paying double, Hope your son is fully recovered now smile
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    • Posted

      What are the Facebook groups? Am struggling to find them! Also would be very interested to know how much it cost privately, if you don't mi d me asking!
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    • Posted

      Facebook Groups?  Are there groups for people with Cholesteatoma?  I must do a search on that.  

      Elclyc, I'm not sure who you're asking ... probably Macs?

      I have no idea about private cost.  My GP said I'd have to pay a 'gap' fee for a consultation with an ENT Surgeon.  This would only be to tell me a little bit more than I already know.  The ENT Surgeon would, no doubt need an updated MRI to form his opinion [that I can get for free], but I'm in no hurry to do that until an appointment with the Noble ENT is looming.

      Candidly, as I am in no specific pain in that area, I'm leaving my problem in the 'Too Hard' basket.  Life's too precious to waste it fretting about something that may never happen.

      Thanks everyone for sharing your situations, at least we know we're all in the same fleet of boats!

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    • Posted

      Hi the two groups on FB are 'Cholesteatoma the hidden disease' and one called 'Cholesteatoma' I just googled them and certainly the first one comes up immediately. They are closed groups but were v easy to join - I just messaged & got signed in no probs.
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