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I have had a glomus jugulare tumour and it was exised in...

I have had a glomus jugulare tumour and it was exised in 1993. Not all of it has been removed but I have had radiotherapy and 11yrs on I am still on the planet.

I have found this site to be extensive in its subject and very helpful explaining some things I needed clarified even after this time.

I still suffer from nausea and vertigo as a result of my ear being taken in the operation as the tumor had covered the whole of it.

I have found that I also have had depression years later and wonder if it would be good for counselling to be available and also physiotherapy on the muscular damage that happens. I am only getting the use of my shoulder now and am still numb on the right side of my face.I realise I was very sick and maybe thats not an option but after the operation they have you relearning so many things I think an overall physio session is warranted. Exercises to do at home after.

I was only 28yrs old when it was discovered and had the honour of being one of the youngest to have this condition in the south pacific.

I have had a wonderful relationship with the Nuerosurgeon and ENT specialists that operated on me and now I have moved out of the area I was originally in they have kept an eye on me through outpatient appointments and CT Scans with an ENT specialist where I am now based.

Finally I have found I have way more headaches now then I ever did but these are stress related and have figured out a way to relax and enjoy what a blessing this life is.

Scary yes but now you move on and I really think you need to trust the people who are looking after you and pray that its all going to be ok cause in the end its their skill and gods grace that gets you through.

[i:e1eb0ebba5]This message was automatically imported from the original Patient Experience[/i:e1eb0ebba5]

9 Replies

  • Guest Guest

    Can someone please email me at ****?

    My father has a glomus jugulare tumor and, since they can not operate, he went under radiation therapy.

    His drs are being of no help when it comes to discussing the effects of life with this tumor. He is experiencing tinnitis, vertigo and dizzy spells. Not one dr will validate these sensations, passing them off as merely figments of his imagination. He needs to know if there are others suffering from these types of long term effects.

    Please email me if you have any info. We would also love to hear from anyone else who has this tyoe of tumor.

    Thanks.

    Holly

    [i:a19c85678f]This message was automatically imported from the original Patient Experience[/i:a19c85678f]

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  • Guest Guest

    Dear Holly

    I have just found your comment dated 05/12/05 re your father and his tumour.

    By now I expect you will have moved on, but I had a tumour removed from the right side in July 2002 and again February 2007. I am under Charing Cross Hospital's ENT dept, Mr P Clarke is my primary consultant now but I see others too, At the moment I am undergoing radiotherapy to eradicate what couldn't be excised.

    Your father's symptons are definately NOT imagination, but they do get easier over time even though they don't completely dissappear.

    From my own experience before excision in 2002, I experienced pain, decreased hearing, tinnitis, headaches, double vision, dizziness, balance difficulties, dysphagia, swallowing difficulties, shoulder & arm pain, weakness and limited movement.

    The excision itself was thought to be successful but because they had to cut a nerve to gain total removal of the tumour, I had paralysis to the (r) vocal chord whcih meant I had no voice and couldn't swallow even my own saliva without fear of it going into my lungs so a tube was inserted thriugh ny side so I could be PEG fed through it. As complications to my surgery, I had cerebral spinal fluid leak, Meningitis and MRSA. I overcame all this over time, in March 2003 I had a thyroplasty and later an injection with Silastica into the paralysed vocal chord which enabled me to swallow and gave me a whisper which speech therapy worked on. My arm was still pretty useless and painful and my hearing was diffucult.

    Surprisingly I had to go to my GP for help both with my hearing and my arm. The upshot of those consultations was a hearing aid and referral for an 'Eden Lange' procedure to move muscles to compensate for the paralysed Trapezius.

    July 2006 I was lucky enough to have problems with my hearing aid and asked the audiologist for her opinion of the 'polyp' in my ear that my locum GP had detected but seemed at a loss with, she immediatedly obtained an emergency appointment for me. To cut a long story short, I had either another tumour or it had re-grown and was excised again. I am now totally deaf in my right ear, my vision is worse and I have (hopefully temporary) right side facial palsy to add to my list of difficulties. Because this tumour went in too deep, it couldn't be totally removed safely so radiotherapy is being used. Time will tell how it goes.

    My experiences in hospital the second time around was a hundred percent better than the first time, then it was a case of too many bosses who all assumed the other was doing what was required and I fell between the cracks but was too ill to sort it out. This time Mr Clarke ensured that didn;t happen and my stay was a lot better, also because the team actually listened to me and adjusted treatment accordingly, ie taking out NG tube when I said it was making me ill more than necessary. Last stay I wasn't listened to at all.

    I would like to hear other people's experiences as I have felt very isolated since all this began.

    June

  • Guest Guest

    i am a 43 mum of two and a nurse ( a little knowledge isnt always a good thing !!!)about to face surgery and pre op embolisation in walton hospital liverpool in july for a glomus jugularae tumour, my only real symptoms are tinitus both buzzing and pulsitile on the left had side otherwise i feel very well. my tumour is too big for radiotherapy. its very daunting but my surgeon seems very positive that everything will be ok. i am staying up beat and determined to get through this, hope some of you can share ur experiences with me. nice ones only of course!![img][/img]

    • Fitzpatrick Fitzpatrick Guest

      Hi, i live in North Wales, I am yet to find out my options for treatment of my GJT, the ENT here in NW did say that if I was a candidate for surgery that it would be done at Liverpool. How did your treatment go? How you getting on now? I'm 45 years old

    • GlomusJugulare GlomusJugulare Fitzpatrick

      I am 32 years old and I have Glomus Jugulare Tumor. My tumor was diagnosed October 2016 and I have had Gamma Knife Radiation in Turkey on October 2016.I have tumor on left side. I have pain on left side sometimes , atrofia on tongue left side, balance difficulties sometimes, tinnitus,  and  vertigo before tree years not now.But now If feel arm pain, weakness and limited movement.  I work full time,do whatever I want to do  but now I'm worried because I feel seem pain on the had and atrofia tongue on the right side, I am Fearing I had either another tumour in the right side or symptoms are nerve base (stress)  Now in November I should have Magnetic Resonance. Can you help  about  my symptoms before tretman and after for glomus jugulare tumor and how is life with this tumor.

  • Guest Guest

    Hello Caroline. I was several years older than you are now when my tumor was diagnosed in 1996. I was fifty-one. My tumor is inoperable, but I did have radiation. My tumor hasn't slowed me down a bit. You get used to the symptoms and they become the new \"normal.\" I work full time as a financial analyst. I tire more easily than I used to, but I'll be sixty-two in a couple weeks and I'm overweight! I do whatever I want to do. I still canoe with my family, enjoy vacations in Branson, Missouri, go to my grandchildrens' ball games, and enjoy my flower garden. If you are going to have a tumor in your head, this is the one to have.

    Good luck with your treatment! I look forward to hearing how well you get along.

  • saddy saddy

    hi there

    im 19 years old and I was diagnosed glomus jugulare tumour at the age of 17(eppii broke ur record:lol). Nyways the symptoms occured soon after I had a TB at the age of 15. my guess is i got the tumour from my father. my fore fathers survived to the average age of 32 yrs. The only ones to survive long is my dad and grandpa. i'm not sure about my grandpa since he passed away at the age of 71(i was young)but my dad was diagnosed tumour(prob same) few weeks ago!!

    your statement gave me a relief because I have had 2 embolisation till now but I have to say that my condition is getting worse compared to yours, all the \"might\"occur symptoms has happened to me

    -i cant blink my left eye, tears coming down from it

    -when i smile only my left side of lip move and it moves all the way to my ear (scarry my mates say:lol)

    -swelling at the left side of face which has changed my face structure

    -surprisingly no dizzyness or blackouts

    -sound in my left ear (i think its my heartbeat i'm listening to)

    -rarely some pain

    -sometimes i feel that my left part of body is a bit weak.

    did these happen to you and whats the best way to deal with them??

    esp, did you have problem with your eye?? because it is troubling me and yes of course my facial structure due to the swelling. my doctor suggested that i have a surgery of my eye if sth was to be done.

    felt really nice to know that i am not the only one with this problem.

    gud luck for future smile

  • GlomusJugulare GlomusJugulare Guest

    I am 32 years old and I have Glomus Jugulare Tumor. My tumor was diagnosed October 2016 and I have had Gamma Knife Radiation in Turkey on October 2016.I have tumor on left side. I have pain on left side sometimes , atrofia on tongue left side, balance difficulties sometimes, tinnitus,  and  vertigo before tree years not now.But now If feel arm pain, weakness and limited movement.  I work full time,do whatever I want to do  but now I'm worried because I feel seem pain on the had and atrofia tongue on the right side, I am Fearing I had either another tumour in the right side or symptoms are nerve base (stress)  Now in November I should have Magnetic Resonance. Can you help my about symptoms before tretman and after for glomus jugulare tumor and how is life with this tumor.

    Good luck for the all of you.

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