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Has someone been throwing satsumas?

Posted , 4 users are following.

bev3107
bev3107

Hello to all fellow sufferers out there!

I was diagnosed with a glomus jugulare tumour which is somewhere between the size of a golf ball and a satsuma (surgeon's words not mine) last November and am going into hospital in a few weeks for embolisation and surgery but have found it incredibly frustrating that there seems to be so little information about this type of tumour and even less support for sufferers and their families and friends. After finding the Patient UK website and reading the postings, I'm hoping that some of my frustrations will be alleviated.

I dont know whether its me imagining it or whether I really do have the tumour from hell!! Reading the bits of info on the internet Glomus jugulare tumours seem to have a variety of symptoms and unless you are pretty unlucky, as I seem to be, you only get one or two of the symptoms. I have (in no particular order) pulsating tinnitus, loss of hearing, facial paralysis which stops me closing my left eye, a nose that feels as if its caved in if I lay on my right hand side, the inablility to smile on the left hand side of my face, paralysis of the vocal chords/voice box, loss of balance not to mention the headaches which come with the pressure in my head. Sometimes the only way to get through the day is to have a bit of a giggle about it and make jokes about people throwing satsumas at me.

If your still reading, by now you must think that I'm a right looney tune but I can assure you I'm not. The doctors have told me that once my surgery is over I have to have gamma knife therapy and be monitored for years and I want to know everything I can about this type of tumour, this type of surgery and the after effects and what I can expect in the future.

If anyone wants to share their experiences please get in touch x

0 likes, 3 replies

3 Replies

  • Guest
    Guest

    Posted

    Hi

    I hope by now you will have had your operation and are well. Though it isn't myself that has this tumour, if you have read the postings you will know that my experience comes from being the mother of a fellow sufferer. As you say, there is so little knowledge about this, but I can only relay my experience of it. My daughter is under the care of a Hospital in Cambridge, despite us living in the Norh East.I can only say that the expertise there is excellent. we have lived with this now for 12 years, as unfortunetly, they cannot remove the tumour. Lauren has had two operations, and radiotherapy. She is now 25, and has as you said, approached her condition with a sense of humour. It is the only thing that keeps us going. Laurens tumour is genetic, her cousin also developed the condition, but fortunetly it was treat early and excerised. Most days we forget about it, but when as now, it comes up to the time of year she has a check up, it becomes very real again. Lauren has some of the symptoms you describe, but luckily they are minor, and have become part of Laurens everyday presentation. We have learnt to adjust to her not hearing and loss of power to her voice. She herself works with deaf and blind people. I am extraordinarilly proud of her, but it dosen't deflect from the fact that I wish I could wake up and it has never been or happened. If you would like to speak to her, I could ask that she could get in touch. She is a very warm but private person. She always approached her condition with dignity, never wanting a fuss or anything. She also now has a little boy, who we love so much. I hope this message brings hope and some answers.

    Best Wishes Joan

    [color=red:b808c1682a][size=9:b808c1682a][b:b808c1682a][i:b808c1682a](Sorry but Patient Admin have removed a Doctor, Consultant and or Hospital name from this posting, as it is the policy of Patient UK not to publish these on this forum.) [/i:b808c1682a][/b:b808c1682a][/size:b808c1682a][/color:b808c1682a]

  • Heller
    Heller

    Posted

    smile Hi, i too am a fellow suffer, and am under the same Cambridge Hospital i have had two operations to remove tumours and radiotherapy and still have a tumour left. Its all so frustrating i know very little about this condition and its hard to get information from anyone regarding treatment and the long term effects i too am left with headaches from hell and dizzy fainting spells which were the main indicator in locating the condition as i would black out as well as a vey different voice from the one I was born with not tm mention the scars from the surgery.

    Everything is so different now. But each day I try and remain positive even when the black cloud is looming above, its very hard for family and friends to totally understand as there are no support groups or anything.

    Please dont give up I wish you well.

  • UnaBorisPufi
    UnaBorisPufi bev3107

    Posted

    Hi,

    I am the mother of a 15.years girl who was operated 9 month ago from paraganglioma timpanojugular C2 ,IV grade.She was operated by the best doctors for this tipe of tumor -Dr Mario Sanna and Gruppo Otologico in Piacenca,Italia. They are really increadible-as doctors as persons.My girl is today ok, without any recidive.Her facialis is almost invisible.She plays piano and mandolin in orchestra despite of her herring loss in one ear .

    We are so grateful that we found them.

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