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catherine68878 catherine68878

Congeital cholesteatoma

My 14 year old son had  poor hearing in one ear and as his speech was absolutely normal it was not detected until he was 7. After many appointments -mainly because I was in denial that there was anything wrong -a scan confirmed a congenital chloesteatoma. They new itwas this beacause he has never had an ear ache or infection ever in his life.Reluctantly aged 10 he had it removed by Nigel Padgham (now retired)  and four annual follow ups said no problem ,all is well.The op he had aged 10 was done through the ear NOT behind it ,through the bone. His new consultant now says there may be some residual disease and seems adamant she wants to go in behind the ear. I will not allow this as I want him to continue swimming etc. How do I get the hospital to refer him to Great Ormond Street? East Kent Hospitals have just been declared ,'Inadequate' in the most recent inspection. He is my only son I want the best for him . Any advice please I am worried sick ???

10 Replies

  • Becky157 Becky157 catherine68878

    I had a cholestoma removed at aged 11,some thirty odd years ago. They went round the back of the war and I have no hearing now. I couldn't swim for 3 years but I do now (not very often) and always with an ear plug. I am on the waiting list for a mastoid cavity obliteration surgery at st George's in tooting which I need to have due to constant pain but afterwards I will be able to go swimming without the earplug (apparently) and they may try to restore my hearing, but not got my hopes up on that one. Hope this helps. I have to have the operation at st George's as they have the specialist equipment.

  • caz01 caz01 catherine68878

    Hi

    My son was diagnosed with an acquired cholesteatoma in 2012 aged 10 years and had surgery where they opened him up from the back of the ear.  He had is surgery at GOSH with Mr Albert, fantastic surgeon.  He had what they call canal wall up surgery (other option canal wall down).  With they surgery that he has had he is still allowed to swim.  Initially he was under a local hospital  (we are in Hertfordshire) where the consultant didn't even discuss the different options.  We were one week away from his surgery with the local hospital when I asked for an appointment to ask why he couldn't do the canal wall up surgery - he simply replied "I do not do that surgery"!  I was so shocked.  If I hadn't carried out valuable research myself he would have had op the following week which would have been a completely different outcome with regards to swimming etc.  It was the local consultant that referred us to Great Ormond Street.  He had one surgery in Jan 2013, was opened up again in Feb 2013 to check all OK and in July 2013 he was opened up again to try and reconstruct the hearing bones that had been destroyed through the cholesteatoma.  We went back in Oct 2013 and do not have to return till Oct this year.  I know what you are going through, it is such a worry and you just want the very best for them.  It is probably best to read up on the two type of surgery canal wall up/canal wall down and go armed with info to you ENT consultant.  Our local consultant told us we would have to go to a childrens hospital for our son to have the surgery we wanted him to.  We were ofered Adenbrookes or GOSH.  I hope this helps you and please do not hesitate to ask any more questions, if I can help I will.  Take care x

    • catherine68878 catherine68878 caz01

      Thankyou for your reply ,it was really detailed and helps me further to go next time with the right questions and names of the operation types. As a' fussy mummy teacher' person I know I am certainly not going to let them touch him again in our 3 local NHS hospitals that have all just been declared inadeqate.I als do not wisn to condemn to a lifetime of no swimming, four monthly ear suctioning etc.His first op to remove his congenital c-toma was performed through the ear canal not behind and they gave me photos to take home to show this white pea thing being pulled out through his ear. That lovely surgeon ,'the head man'has sadly retired-not for him I suppose.The last 3 annual checkups have been fine. It is his new conultant who suddenly seems scalpel happy and wants to operate on him. She treats me as if I have no say in the matter. She can think again. She seems very arrogant and cold.We are waiting for his next appointment to come through. Thanks again It's comforting to know someone understands.All my son's little bones were enveloped by his c-toma but he functions absolutely normally with hearing in one ear.

    • justine 74896 justine 74896 caz01

      Hi, I have just joined this group but just read your post. I hope your son is doing well. My daughter is also 10 and with David Albert at Portland Street hospital. I have to agree he has been fantastic and so glad that we got a second opinion after her first surgeon wanted to carry out an oblituration on her ear after she continued with infections after her mastoidectomy with him. Now that she is in the safe hands of Dr Albert I feel more positive about her 4th operation. Just hope that this is her last one but you dont know with this desease. Wishing you all well x

       

  • caz01 caz01 catherine68878

    Hi

    I felt exactly the same as you.  Looking back can't believe that the local consultant didn't tell us all the options available at the start.  He even said to us 1 week prior to op that he felt it was in our son's best interest, being a young boy etc. swimming etc. to see Mr Albert at GOSH yet had we not asked for that appointment he would have been operating on him the following week!  Our son had fantastic results with his hearing test after having 2nd op in  July but I have a feeling it may have got worse again.  The whole thing is an awful thing to have as you feel it never really leaves you.  I wish your son all the best and as you say don't let this consultant walk all over you.  Probably worth doing your internet research too (if you haven't already) as it explains it all alot better than I could.  If you look into Mr Albert at GOSH (also private at the Portland) it says referrals have to come from your local GP/consultant.  He is fantastic and I would strongly recommend him.  Please keep me posted and all the very best.

  • Nosnip Nosnip catherine68878

    Hi Catherine,

    Just wanted to know how you got on with the hospital transfer and your sons op?

    We too are under the east kent nhs trust...shambles!

    My daughter (age 5) has just been sent to the same consultant (lady) ms Neumann and she wants to perform a mastoidsectomy but she can not operate until October 2015! 

    Ms Neumann is transferring my daughter to the Evelina hospital (st Thomas's/guys).

    I too am worried sick, it can take up to 5 hours to operate? 

    All the decent (old school) ent consultants like Dr Padgham have jumped ship and only work privately.

    Thanks for listening.

    I do hope you son is ok.

  • david36046 david36046 catherine68878

    Dear Catherine, I want you to know my background before I input any comment. I am a retired, trained ENT SURGEON. I can, hopefully answer some of your previous questions, although it is, as you have said, important that you make your own mind up about any comments made! 

    I have more in-depth understanding of the immediate effects of mastoid surgery for cholesteatoma since I recently underwent this myself!!!!

    Knowing now what I know would have helped me to treat my patients even better but it is always easy to be wise in retrospect.

    Firstly it is understood that you should make enquiries and have trust in any medical team concerned. Personally I was happy to refer on for second opinion if a patient wanted this. In saying this I make no comment on your personal experience with your son as I have no local knowledge to draw on and it would be unethical and unhelpful  of me to do so in ignorance.

    I can however explain from the experience of treating a nurse colleague's child for cholesteatoma that we both found it stressful! Once diagnosed, especially in one so young, it does not do to ignore things and hope the condition will go away. Cholesteatoma although not cancer,  can behave like it by spreading and destroying vital structures in and around the ear. It can be difficult sometimes to see the extent of disease without exploring the area more widely. Both CANAL WALL UP and DOWN types of surgery have their place.

    Particularly in young patients, cholesteatoma has a tendency to recur where some can be left during attempts to keep the canal wall up!  You can perhaps understand then that a definite commitment to carrying out this type of surgery cannot always be made without surgical exploration.

    Anyway I hope my comments may be of some help and that your son has had a good outcome from treatment by this time and will be under good supervision. The outcome in my nurses childs case was good although he did need minor surgery on one more occasion in his teens.

    Best wishes.

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