anyone who has kids with ear problems make sure that your doctor ENT/ investigates properly, after years of perforations and ear infection

and not being liistened to, i now have had a 3 hour operation to remove this horrible cholesteatoma..... and i cant help thinking that if i had been investigated instead of being offered a hearing aid, i wouldnt be suffering like i am now, my head is numb my ear is swollen and nummb but also painful,-- deep inside it is is painful, i feel unwell dizzy, and unable to sleep,-- after year s of hairloss , hair was growing back slowly , now surgery has cause it to fall out again in combbfulls, i was lucky to have found the ent doc that i did, i was lucky that he found a brilliant surgeon , so anyone that has ear probs or kids with ear probs do not be fobbed off, if left,--- this horrible growth causes brain abcesses and meningitas and mine was big and close to my brain... after 4 yyaers of adrenal and hormone probs, i am now having to again opt out of life for recovery, i am a slow healer and it will be months before i am back to where i was. not be fobbed off.

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13 Replies

  • Oh Pettals what a grim story. My grand daughter has just perforated her ear drum, poor mite she is inly 2 ans three months.

    I hate to think this could happen to her. Thanks for the warning xxgins

  • yes gins make sure you keep eye on her-- i never heard of this.. its not a tumour but it behaves like a tumor and an grow again... i was so lucky to have seen the ent doc that i did and he was adamanant that i saw a particular surgeon, , he gave me a web to look up but i didnt before the op and i normaly look every thing up, but i have now and isaw a forum where little mites had two bloody c-tomas both ears. i am getting on now but i have no idea how long its been growing and i am in a mess so my heart goesout to anyone with this especially the wee kids poor little mites. i notice the surgeon on the link i posted has said that not too many ent people understand where to look or even how to look for it, so never ever be fobbed off.

  • Hi Pettals

    I sincerely hope that you are feeling as well as you possibly can be today? I am so sorry to read of the awful problems in your post, and I genuinely thank you for your advice and warning.

    All my hopes and dreams for you

    Ken x

  • i hope yu ar efeeling ok ken how did it al go?

  • Hi pettals

    I sincerely hope that you are feeling as well as you possibly can be today? The operation went well thank you. I am now awaiting a follow up MRI on the 4th April. Not been too good today (Sunday), been in bed most of day as been having cluster headaches for a few days.

    Hope that you are doing great?

    Take care

    Ken x

  • helo author, so sorry you are going thru it - one thing afetr another , google this or have i told you baking soda, not baking poweder but baking soda and health. wishing you better soon, no i am not great, just phoned gp to get a home visist----- oh said receptionist we dont come out for ears!

  • Hi pettals

    Sorry to hear that you are having some problems also. It is really difficult to get a GP visit for anything these days. If you are ill enough for a visit, you need an ambulance anyway!

    Take care

    Ken x

  • I have gone cold to the core after reading your post. God, what a thing to go thru. I cannot imagine how you must have felt when told what was really wrong with you. Big, very gentle, hugs, & lots of loving thoughts & wishes for a speedy recovery, Julie xxxxx

  • thankyou so much. i had never heard of it and to think that many people may have the same especially as kids cos all my probs started as a child my ears wouldbe stuck to the pillows at 5 years old then tonsils went septic and hey ho ears followed so i jau t wanted to warn people about ear probs.

  • Hi Pettals :)

    What an awful ordeal to endure on top of feeling quite neglected and unheard to begin with.

    How are you feeling today?

    I can understand the healing issue all too well as I too am a slow healer and it's frustrating isn't it when you have to press the 'pause button' on life while we heal. It took 3 months for me to heal after an operation most people recover from in weeks.

    I hope that you are in a comfortable place for your R&R and convalescing after your ordeal, try not rush the healing and we're here if you would like to chat :)

    Sending a bouquet of lavender healing fluffies to you :)

    :) xxxsianxxx :)

  • thanks for the fluffies, i am at home but after years of being ill and the inhosp in2007 with an unrecognised adrenal crash-- an d i know bloody well it was that!--- then it hapoend again in 2010 and lasted 2011 2012 2013 an donly just recovered enough for the general anaseptic-- suppose i had not been well enough-- perish the thought and thru all my adrenal hormones issues and ongoing stuff all i wa stold wa sthat i needed a pyschiatrist!

  • Is it like a benign fatty mass this tumour? You see my daughter had one on the top of her head and it was removed successfully because it was showing through her hair. Now it is regrowing but it is being left and you cannot really see it at the moment just feel it. We were relieved when they told us it was not cancerous.

    You have had such A torrid time I do hope our help and chat will relieve some of your tension.

    take care


  • thnaks gin if you google images of cholesteatoma they are different pictures

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