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my naughty glomus tumour

Posted , 2 users are following.

saddy
saddy

Hi every one

and esp hi to ones with similar tumour as mine. :D

I just found this site few hours ago and I really love it. I've been trying to reach others like me for a really long time and now I have the chance I would like you to feed me with loads of information and suggestions.

I'm 19 yrs old male and was diagnosed the tumour at the age of 17. So far I have found myself the youngest among us smile and thats not good as it sounds. I have very little experience with my life and don't know how to cope with this problem. I act like a normal teenager which is really hard. I drink and smoke socially, I love playing football and play often. current problems with my conditons are

-my left eye that does not shut and gets watery (any solutions? plz)

-my swollen left face which has changed the structure of my face, does it go back to normal?

-when I smile or laugh, i can with only one side of my face and it looks really weird. current solution:cover face or stay motionless

I've had two embolisation till now but I don't think my condition is getting better. my consultant has suggested that I have this embolisation once a year. my tumour is too big to operate and is in the middle of a bunch of important nerves so the only choice I have now is to have the embolisation thingi. I would be really sad if I got worse that this. I am studying A levels and earning grades for uni. at the moment I am deaf with left ear.

anyone with similar experience and suggestions please post comment.

:D

p:::

0 likes, 4 replies

4 Replies

  • jl
    jl

    Posted

    Hi I have posted a note as to how i am aware of Glomas tumours, my daughter has one diagonsed at the age of 12.She is now 24 still has the tumour though has undergone operations and radio therapy. During this time she did her A levels went to university and learnt to drive. She also learnt sign language, and has a job in that field.She to experienced and still does have all the symptoms you describe. Be positive the medical profession can and do marvellous things these days. I have the living proof and now have a lovely grandson, which i never thought possible.
  • Guest
    Guest

    Posted

    thank you for sharing your experience with me. most people I come across are usally above 60. knowing that someone like your daughter had to fight it when young makes me feel stronger. I hope the best for her future.

    P:

  • Guest
    Guest

    Posted

    Hi Saddy,

    hope you are well, I am glad that having the knowlege of Lauren has made you feel more positive. Lauren is due her yearly check up at Cambridge in the near future, so hopefully everything will be ok. This year will be special as not only Lauren and I will travel to Cambridge, but also her 4 month old son, something we never thought would happen. So you see, good things do happen despite things which you think will never allow it. I hope your studying is going well.

    regards Joan

  • Guest
    Guest

    Posted

    Dear I am 65 yrs lady, livng in india. I was taking tretment for the bledding in my left ear, utltimately doctor advised me for a small surgery. He removed clot of blood from my ear and sent for checking in lab. I was diagonised with glumor jugulare. Doctors now advise me to go for MRI and surgery. I am not going to do anything, because I read that it spreads slowly.and after surgeries I will have only to take round of doctors. On this site I saw that there are many who are selling in the same ship with me. I have offered prayers to jesus, you also do the same thing. Jesus will reduce the pain

    kanta

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