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Clostoma needs more research

Posted , 4 users are following.

kids_61505
kids_61505

 Hi iam 22 my names kirsty  I have problems with my ears every day since I was 3 years old  started off as a pulp in the ear but then had constant infections up until a year ago and got the devastating new I had a clostoma in my right ear along with mastoid surgery .  Then I whent to my my specialist and he told me I had really bad wax in the right ear and it was so bad it was growing  out the ear so he booked me in for surgery upon looking in the ear he noticed I had bleeding and discharge  and booked me in. For my now 2nd MRI scan. As there’s an 80 %chance ad likely have another clostoma as iam getting sore heads vertigo which am passing out with  pain in my neck side of the ear head and face  devastated isn’t the word  I have a daughter who is 4 and can’t do much with her as av got bad enxiaty. Depression and just pure frear of passing out more surgery  a can’t work because I have 65% hearing loss in right ear and last years op left me with bad enxiaty  and depression   This is a serious condition I don’t think it’s advertised enough in doctors surgrys  there’s so many cases where it’s missed dig nosed  I want to spread the work on this condion but don’t know where to start help and addvise  anyone 

0 likes, 6 replies

6 Replies

  • Michelle_86
    Michelle_86 kids_61505

    Posted

    Hi

    I'm so sorry to hear of your awful time with yourvear. My son whom is now nearly 13 has had 6 mastoidectomy to remove extensive colesteatoma and infection. He lost all hearing in that ear after the first operation he was only 7 when he had his first mastoidectomy to remove colesteatoma the surgery it self took 9 hours. We was told by the surgeon after that he was very lick because it was on the base of the brain.

    He has just a 2eek ago today had another massive operation 7 hours in surgery to remove more colesteatoma. He had a total obliteration with a blind sac closure so they have taken a graft and completely shut of his ear canal to try and prevent more infection.

    This is specialist surgery but it has taken so long to get to this stage. My son is profoundly deaf in his right ear and is only hearing at 50db in his left ear and it has been soul destroying and devastating because he has had to learn to re adapt to life with extreme hard of hearing and deal with the chronic ear disease that colesteatoma has to offer.

    I deeply sympathise with you after watching my son going through this it is truly awful to see.

    I wish you good luck

    • kids_61505
      kids_61505 Michelle_86

      Posted

      Hi thank you for your replie. My hospital is Aberdeen royal infirmary  based in Aberdeen Scotland . Wow your son is supper brave  that is a lot to deal with av been thro the exact same since 3 years old I had to be held back a year at school I can’t spell or read properly  I find it hard to make friends as I got bullied a lot for having a stinky ear I have been thro 23 maby more operations in my life time  and it’s still going .  I admire you as a mum as I’ve watch my dad get me thro my toughest times you are a really strong mummy as I use to watch my dad worry day and nite about the affect this has on me and he still dose your doing a grate job  and your son is the bravest as it’s a hardship to get thro  I pray that he heals well and recovers and comes back stronger than ever x x. D
  • kids_61505
    kids_61505

    Posted

    We need to get this condion out there  and know about as it’s so uncommon miss diagnosed  and doctors know little about it 
  • mark52029
    mark52029 kids_61505

    Posted

    Hi  ,

    My daughter has been in and out of hospital for years with problems with her ears , she has had 6 sets of grommets from the age of 4 till now , she is now 12 going 13 . She has put up with a lot with others kids taking the p**s out of her about her speech and having a hearing issues . Just recently she had her cholestoma removed about a month ago , yesterday she got the packing removed . Fingers Crossed she is On to the road to recovery now :-) . But i do agree there is not a enough info out there on the cholestoma . Thanks Mark ( Aberdeen)

     

     

  • jennifer38372
    jennifer38372 kids_61505

    Posted

    My. Son is almost 18. He has had 7 surgeries and it appears to be back again. I wish it was happening to me instead. At what point can they not do surgery anymore? He is a beautiful human and has so many dreams. I am so afraid we are going to loose him. I pray every day. I just dont know what to do.
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