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it is so great to find this site and read all these other comments as I have never been able to speak to anyone with this condition before. I actually have bi-lateral glomus jugulare tumours. My symptoms the same as everyone else-was 16 when diagnosed, first op (18 hours long) when I was 18 -had to go to Manchester as didnt do in Northern Ireland back then. Tumour mainly took away-brill doctors by the way. By then I already had the deafness, tinnitinis and hoarseness etc which is how tumour was discovered. The first doctor told me I had a cold!! It took a doctor who specialised in epilepsy who admitted me determined to find out what was wrong who discovered it for me. The surgery left me with a half paralysed face and had to get my jaw , cheekbone broken to get at it but was back to work within 6 weeks. They grafted a nerve for my face which between that and the swelling to go down took about 6 months to work properly. It also affected my swallowing but soon learnt to swallow a different way and dont look any different when eating-though can only chew on the right hand side of my face re broken jaw and wasted tounge on that side.
Then at 21, had to go back again as had been growing back (14 hour surgery this time). When woke up felt great and no changes to my face etc this time. Didnt get it all out so then went for another surgery again very quickly afterwards which didnt happen as the microscope broke down during surgery!! So the option for me was radiotherapy which I had fifteen years ago. I am now nearly 38. I have never had children as they since discovered the genetic part-my whole family had to do blood tests which went to Holland to help discover the gene, which they now have. I know that if I have a son apparently he wont develop it, but he will carry it and if he had a daughter only, it would develop in her. It came from my dads mum to him then I developed it. My younger sister never developed it. For years I went for six monthly checks, then annual checks, but within the last four years, my left hand side (the one I had all the ops on) has really started to prortude on my neck. I wear my hair long but I am very self conscious about it. The trouble being my right hand side has started to grow as I can now feel it-was always there before but could never feel it on my neck but now can. So feeling scared to be honest. The doctors say medicine has advanced so much since I had my ops that they can operate now if they ever have too (was told after my last op when I was 21 that surgery was not an option anymore because they discovered then that the tumours were also in my lungs) so the aneasthetic was too dangerous. The glomus tumours that spread to my lungs by the way have totally remained steady and never gave me any problems at all.
Now the doctors say they can operate if need be but it will only be if they ever have too as is a very dangerous op.
I just wish I could do something to stop them growing as I am used to living with my hearing etc. My hoarseness can be fixed-I had a vocal cord surgery repair but the tumour caused my soft palate on one side to stop working but they want to fix that. I run my own business and was married (now split up) but feeling very alone now as they are definately growing and feel scared.
Sorry to waffle but so good to find this forum
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