I am 14 years old and was diagnosed with cholesteatoma on friday
Posted , 7 users are following.
Hey my names Beth im only 14 and on friday i was told i have cholesteatoma. Naturally im terrifed and upset but i have been doing some research and really want to get some opinions on how other people's operations went. I've had ear problems since I was about 3, constant infections, then i had gromits, then i got a paracite and a growth in my right ear leading to a very deep retraction pocket.
I would be very grateful for any replies! Also i am a 100m runner for my county and am extrememly worried that my balance will affect my perfomance?
Beth x
0 likes, 17 replies
antonov bethmariexx
Posted
I'm 19 years old and had a cholesteatoma and radical mastoidectomey when I was around 14 years old. I was very scared and sad as well. The only regret I have is not having my operation sooner.
It's good to hear that they have found out you have a cholesteatoma. The longer you wait around with a cholesteatoma inside of you the worse things will be. Maybe try write down some questions beforehand for your ENT doctor that's another thing I wish I had done. Don't worry though!
bethmariexx antonov
Posted
amy42349 bethmariexx
Posted
My experience follows a similar route to the reply below. I was around 10 when I started having problems and was diagnosed with having a cholesteatoma around 12. I had an operation to remove it when I was 12 and I had few problems other than an unexpected facial palsy for a while after. My balance is a bit off but I've taken that to be part of me-don't let this diagnosis stop you from doing anything you want to do. If I can help anymore then give me an email on ____
Don't let anything bring you down-all the best!
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caz01 bethmariexx
Posted
Sorry to hear of your diagnosis, try not to worry. My son Callum (nearly 13 now) was diagnosed a couple of years ago and has had a mastoidectomy to remove the cholesteatoma. He had one operation in January 13 and a second look operation in July 13. He had both operations at Great Ormond Street and was very well after both operations. He was even sledging a few days after the 1st one (naughty mummy I was - he really shouldn't have!) He is keen on sports and plays very competive football and it has never affected his balance. I am sure you can carry on with your running after recovering from your operation. Try not to worry, have all your questions ready for your consultant and if you want to ask Callum or myself any questions please do not hesitate.
Take care
Caroline
bethmariexx caz01
Posted
hey Caroline
thank you so much i have been very worried but i'm sure if callum can pull through and carry on as normal i can to
i was wondering how long i would be in hospital after the operation?
beth x
caz01 bethmariexx
Posted
The plan was for Callum to stay in for 1 night for both operations. Luckily he was well enough to go hope by about 8pm so didn't have to stay. I think the first one he should have stayed but snow was coming down fast and we pleaded!! I know how you feel about thinking things wont be the same again. It is exactly how I felt over Callum, he was only 10 so I suppose I did all the worrying. Obviously it is always something to have check ups for etc but things are sooooo much better than I imagined. Callum was back at GOSH on Tuesday last week and his consultant is thinking of taking another look as he has had a couple of infections in the last 6 months but I would rather this than it get out of control. You really will be ok, try not to worry. Callum bounced back really well with lots of fuss. Take care Caroline xx
bethmariexx caz01
Posted
I honestly can't say how gratedful I am for your replies, I have a lot of friends and family here for me but I don't want to worry or upset any of them and its nice to have someone who can relate to me. I hope to God I am as lucky as Callum has been (what a strong little boy by the way) and i guess i must just stay positive. I have a scan tonight to see how far past my ear drum the cholesteatoma is or something so hope this all goes well
once again thank you so much i cant stress how much this is helping me and you are so kind to give up even a few minutes of your time to help me
thank you so much
Beth x
caz01 bethmariexx
Posted
Bless you, I was in the same position as you and although I had lots of people to talk to about Callum's problem they didn't really understand because they had never heard of it. I found talking to people who knew all about it a great help. Yes, Callum is fab, nearly 13 now and never made a fuss about it, just taken it all in his stride. He has moderate hearing loss in his ear but know one would really know. It has never had an impact on his education.
I truly hope all has gone well with your scan tonight and it isn't too far advanced.
Take care Beth
Caroline xx
bethmariexx caz01
Posted
still waiting for the results, get them on the 23rd very anxious but going skiing before so that is exciting
thanks for your help
Beth x
caz01 bethmariexx
Posted
Hope you are having/have had a great time skiing. Good luck for Monday, hope all goes well.
Take care
Caroline x
caz01 bethmariexx
Posted
I am back at GOSH for a check up with Callum on Tuesday and was just wondering how things are for you at the moment, hope all is OK.
Caroline x
bethmariexx caz01
Posted
sorry ive been busy, my operation was going to be may 6th but it clashed with my GCSEs so now is end of june
hope all went well with Callum x
lc367 bethmariexx
Posted
Hope you are okay and that you've managed to get the scan results. Given how hard you'll be working for your GCSE's I don't want to bore you, but I wanted to share my experiences with you. I have had some experiences which may be relevant (although I can't claim to have competed for my county, which is very impressive.) After my last operation I took up a sport for which balance is an absolute fundamental; I went on to enjoy many years of competing at a high level.
I was diagnosed with cholesteatoma when I was 14 too (I'm 27 now). At the time the cholesteatoma was infected and I had a left-side palsy. Shortly after (by this time I was 15) I underwent a tympanoplasty. This was stressful, of course. Yet I could never have claimed to be a sporty individual at the time and so actually enjoyed missing PE for a while. Being a geek, I spent the time working on my GCSE Design Tech project instead!
When I went to universityI discovered a love of (and modest talent for) fencing. At 19, however, I underwent a radical mastoidectomy to address an advanced reoccurance of cholesteatoma. This was my last operation, and again very stressful of course. But it was only 2 months before I was training again. It felt odd at first, and maybe once or twice in a 2/3 hour session I would feel that my balance was slightly off.
After a few weeks of training these feelings had gone though. From then on the only effect of my condition on my fencing was making me unsure exactly of what the referee or my coach was saying if they were to my left. To be honest, I've never been entirely sure that the perceived effect on my balance was just a result of the general anesthetic anyway, as I was under for over 7 hours in my last operation.
In 2011, alongside teammates who included then national medallists and previous national champions, I had the privilege/agony of losing in the university championship final to what was essentially the then British team- I have to begrudgingly admit they were better on the day!
I don't fence anymore due to a duff right knee but I do play football as a central defender. I'll be damned if my balance has been any worse that any player without cholesteatoma that I've come up against to date!
Given my own experience with cholesteatoma, I know that you will be able to achieve whatever it is that you want and you put your mind to.
All the best,
Laurence
cooperishungry bethmariexx
Posted
My name is Cooper, I'm 15 years of age and I was only recently diagnosed with a cholesteatoma, and my surgery is in December.
I am pretty freaked out and scared about the surgery, as I do already have 25% hearing loss on my left, and 45% on my right.
I hope your surgery went well and that you could actually help me out by telling me what happened?
Thanks a lot, Cooper
bethmariexx cooperishungry
Posted
Im sorry for the ridiculously slow reply, I guess you could take it as a good sign that i've been out getting on with my life! I havent been on this since my surgery so its weird reliving the surgery. Its scary i'm not going to lie but I guess any surgery is. My nurses were wonderful and to be honest no matter what anyone says, how nice they are to you, you just have to get through it by yourself. When I was being put to sleep I just closed my eyes and tried to imagine it wasn't happening. Gosh I feel so sorry for you that you're where I was in April (mine was end of June) its awful I know but you'll get through it. I was so scared! I woke up feeling fine but that was the morphine, its uncomfortable and you feel a bit stiff but you dont experience any pain initially. The next day was the worse for me as I couldnt get up without feeling dizzy and I just started to feel very low. The day after that was my birthday and that too was sad as your taste goes, your head hurts and you feel all groggy. Its like that for about a week but then gradually you start getting better. I remember when I first successfully cleaned my teeth without wincing and how good it felt! Step by step you get better and now you would have no idea I even had the surgery. My scar is tiny and has healed up so well im so pleased! Honestly i'd say im back to normal just if someone touches my ear it feels numb. The only way I can describe it is if you get someone else to feel your finger nails; you feel them touching your nails but its a weird sensation
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stay strong xx