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glomus jugulare tumour

Posted , 15 users are following.

nicgill
nicgill

Hi

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

3 likes, 60 replies

60 Replies

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  • d19606
    d19606 nicgill

    Posted

    hiniv just found out in december i have a similer tumor not sure which kind yet but im waiting to see ent on friday to find out whats what next they saw it by looking in my ear behind my ear drum. i had an mri scan but it showed nothing up so im going to get told off when i go back as i backed out of a ct scan. now i know i should have had it done. im scared. and worried sick. i go to rotherham hospital and iv been told its rubish and that scares me more. feel like im bei g left for to long iv had the pulsating in my ear for more than two years. iv made another pist just now hoping to hear from other people who have same tumor. hope i hear from some one soon.

     

    • nicgill
      nicgill d19606

      Posted

      Hi

      sorry to hear about that. YOU will need to go for the scan-I know you are scared but you need to get it sorted sooner rather than later, 

      There are many different types of tumours so when you have the scan they will be able at least to get it sorted for you.

      PLease dont worry about whet hospital you go to as sometimes that isnt where you would get your treatment-they will probably refer you to wherever would specialise in whatver type of tumour you have. I was sent to Manchester.

      Good luck for tomorrow

       

    • d19606
      d19606 nicgill

      Posted

      hi i went back to hospital and they took a pic of the tumor they put a camara in my ear and they showed me it fills all my eardrum cant see over it. iv got to have a ct scan with contrast got to wait for it to come gosh. then they said if its a small one il have laser at doncatser and if its larger ones il have to go sheffield. i do t know what to expect till iv had the scan. the doctor said from what she can see she thinks its a small one but i do t know how she thinks that. it looks big to me. on the picture she showed me of it. all i want to know is do you die from these tumors do you have a shorter life 
    • nicgill
      nicgill d19606

      Posted

      Hi

      sorry to hear your news. If the doc thinks it looks like a small one it probably is-everything will look big too us and its so unexpected when you hear. Hopefully it is small and you just have to the laser.

      I am not a doctor and dont know what type of tumour this is but I know if it is a glomus tumour they are very slow growing and can be operated on. I am now 41 and had my first op at 18. 

      Have a wee word with your doctor to stop you worrying and hopefully that will put yur mind at rest a bit

      Thanks

    • Kateebr
      Kateebr d19606

      Posted

      Hi!! I can't find my original post and my iPad keeps crashing so before I write more I just wanted to say thank you for replying to me!!

    • Kateebr
      Kateebr d19606

      Posted

      I finally saw the consultant on Friday he said that my tumor is relatively small. They most likely won't operate on it but more likely have radiotherapy. I had a blood test to test for secreting the hormones and will have a pet scan to see how slow/fast it's growing but he doesn't think it's doing either. I however do feel it's secreting these hormones either that or I'm going madder! Even under the slightest bit of stress these days I seem to get really thumping heartbeat and palpitations and my throat seems to kind of tighten insid and i just seem to feel really stressed?? Who knows one things for sure I'm amazed that something so small can be such a pain in the arse! 

      Anyway I really just wanted to say how grateful I was for you replying!

    • d19606
      d19606 Kateebr

      Posted

      hi there iv been to a few different forums about these types of tumors and i have read of alot of peole having it taken out and been fine after and some with big tumours to.

      i think mine must have been secreting hormones as i had palpitations and they have stopped since having tumour taken out

      which is weird as my dr told me mine wasnt. but then i didnt do a blood test only urine test were i had to pee allnight in large bottles for three days.weird.

      anyways there is this sight that i found it has old posts but i posted on it a couple of times but no one seems to go on it any longer but has loads you can read from people who have had glomus tumours of any type to do with same as ours.its 

      http://thephotographerblog.com/an-unexpected-photography-project/

      also another site,http://pheochromocytomasupportboard.yuku.com/forums/9/Paragangliomas/Paragangliomas?page=2#.V8X_j3h4WrV

      go on these sites youl find it very helpfull.

       

    • d19606
      d19606 Kateebr

      Posted

      its this site its to slow i have to past a post on to it or it crashes its slow for me anyhow. iv done a post but its waiting for moderation as they have to look at it befor puti g on as iv put some links on it for you. hopfuly it wont be long befor you can read it.
    • Kateebr
      Kateebr d19606

      Posted

      Hi!

      i read those sites and they are good some of it I don't understand 😀 How are you feeling since you had it taken out? They are pretty certain mine is hereditary but the consultant seemed quite complacent about it but it's not him living with it!!! He said the risks of what could happen taking it out far outweigh the symptoms I have now. I suppose you just have to trust their opinion??!! I do feel sometimes though that I'm sat at the bottom of all the filing waiting to be looked at and that they only take a cursory glance at what they're given the five minutes before they see you, but I guess I shouldn't complain because at least I'm not in the states. Anyway will send before this thing crashes 😀😀

    • d19606
      d19606 Kateebr

      Posted

      hi I'm hoping mine isn't inherited

      i go to the hospital on monday so i think they will be telling me then all about it.

      i can hear fine and i feel good exept going through perimeno lol got a whole new set of problems with that, but as far as the tumor goes they did a good job, my scar is so close to my head behind my ear that you cant even see it unless i press my ear forward,the only problem i have is my ear is numb to the touch. my operation only took

      around three hours and then i was back on the ward and up and about i went home the following day. i felt fine till the week after then started with a bad ear infection so bad worse than labor i dont even know how i coped had to take two lots of antibiotics and loads of strong pain killers and i could still feel it but i got over it. hope i never get that ever again. i think people need to find a good dr.i must have mine was burnt out and i had a face moniter but on my nerves to make sure they would not damage them they kept a good eye on me.

      i just felt a bit dizzy for a few weeks.

      i hope it never comes back but i do know they can, but she the dr told me its rare to come back.

      all i know is this time round il know straight away if i get it co ing back as i know the signs now and i didnt befor, so i can get it sorted alot faster. they went behind my eardrum and just laserd it away, it was only about 4mm what you have to remember is the eardrum is tiny so mine was just behind it and beging to curl around and go behind some were else cant remember what she said to me, but she said she got the whole lot of it.

      i was realy scared of the operation and i was realy scared of having a tumor but its gone im still here and everything is still working. i hope you will be fine and can get it all out and it never comes back.mine was the easiest one to take out so i was an easier patient. 

       

  • danni46569
    danni46569 nicgill

    Posted

    I have found out Thursday my new Dr's that not all of these tumors are operatable. It depends on the location and if there is nerves going Thursday it. This is where I stand right now. She explained it will not kill me unless it has cancer cells. Where mine they can not test it. She said the will watch it and be there for me. My advice to anyone with type of tumor is ask questions. Fine out you options . And enjoy yourself. It has been 3 years with my tumor and have adjust to it the best that I can. My prayers are with the both of you.
    • nicgill
      nicgill danni46569

      Posted

      Thank you and yo you also.

      Glomus tumours tend to be in general benign tumours I believe but there are so many types of tumours you can get in that area.

      My nerves were affected in the tumour, facial, eyes, hearing, swallowing. Thats the unfortunate bit about it the location of them.

      Glomus tumours are also slow growing tumours and my doctors just watch mine now and have done for the last twenty years. They might stay steady so as long as they keep an eye on them that is good.

      Sorry to hear of all your problems but the good thing is they know about it and keep an eye on it. Surgery is much more advanced now in the equipment they have compare to when I got my ops 25 years ago.

      All the best!!

  • Gilesdad
    Gilesdad nicgill

    Posted

    I hope you don't mind if I join in this discussion. My name is Paul and I also have a Glomus Jugulare tumor. Mine was diagnosed in January 2015. I am fortunate to have a primary care physician that found it right away. Following a routing physical ( I'm a 53 year old male) my doctor asked if I had any questions or concerns to mention. I told him I had been hearing my heartbeat in my right ear for several months. He checked my ear and noticed the dark discoloration behind the ear drum and sent me to ENT. The ENT said it appeared to be a Glomus Tympanicum tumor pressing up against the ear drum. He ordered MRI and T scans. The results showed the tumor was actually a Glomus Jugulare tumor which as we all know is more difficult to treat than the Tympanicum tumors. The surgeons recommended "wait and see" treatment. They did not want to operate because surgery can cause damage to

    cranial nerves. They just wanted to monitor my progress every six months. Eventually symptoms would deteriorate to a point they would have to do surgery.

    I live in the USA and decided to get a second opinion at a larger

    hospital in St. Louis that has doctors that specialize in this type of

    tumor. They confirmed the diagnosis, but said do not wait. It was only about 2cm in size and they recommended taking care of it right away. After they reviewed the scans they decided open surgery would be

    too risky since the 9th facial nerve was already entangled in the tumor. We opted for Gamma Knife Surgery to radiate the tumor to stop its

    growth.

    I had the GKS (Gamma Knife Surgery) June 11, 2015 and after about six weeks my symptoms had nearly all disappeared. My symptoms

    included the pulsatile tinnitus, mild ear aches, general aches that

    moved around my right facial area. Sometimes behind the eye,

    sometimes in the jaw, sometimes in the cheek area. Mild waves of dizziness. I was pretty much symptom free from July through the end of 2015 but the pulsing started coming back again. Then I had my 6 month MRI to follow-up. That scan showed no growth in the tumor. I am scheduled to return again in December for a 12 month MRI. My symptoms over the past three months have regressed back to how they were prior to GKS. Which is fine with me. I have no swallowing issues, no shoulder pain or numbness, no problems with facial palsy, no droopy eye. I can deal with mild aches and a constant feeling that someone has stuffed a wad of paper in my ear. I have come to terms with the fact that I will always have the tumor and that there will be good days and less than good days. But I'm mobile, eating, talking, running, and appear quite normal. In the back of my mind though I wonder if these are "the good old days" and that someday I will have much worse symptoms due to the tumor. I have had a couple hearing tests and next week will begin the process of getting a hearing aid. The tumor has eroded some structure within my right middle ear and has caused hearing loss. I have to ask people to repeat themselves quite often. Thanks for listening. If anyone has questions about GKS or anything you want to ask or compare please reply. I'm thrilled to find a group of folks who share the same experiences this has brought me.

    • nicgill
      nicgill Gilesdad

      Posted

      HI Paul. Lovely to hear from you and you are grand to join in. The more the merrier I say.

      I was very interested to hear your story actually as I know America is more more advanced than the UK in your medical stuff.

      YOUr sympoms are all my very early ones but I ended up with a very large tumour which needed the surgery therefore I ended up with facial nerve damage and things-at that time anyway. They implanted a nerve and it took six months to kick in and now I look like everyone else-I hope lol.

      Lovely to hear your story anyway and all the best (from sunny-for once-Belfast) lol

      NIcky

    • Gilesdad
      Gilesdad nicgill

      Posted

      I do have one question Nicky. I read a lot of patients with glomus jugulare tumors have swallowing difficulty. You also mention it is one of your symptoms. I have noticed a difficulty getting food to pass easily down my esophagus, but the actual swallowing through the throat seems fine. Sometimes I have to sit and wait a few moments for the food to pass. I have so many little things going on that I don't really know what might be a symptom of the tumor, and what is due to something completely different. So I guess I'm wondering how you would describe your difficulty swallowing. I suppose it's more to do with the actual motion of tongue and throat, and not so much to do with the passage of food once it's been swallowed.

      I understand if you prefer not to answer.

    • nicgill
      nicgill Gilesdad

      Posted

      Hi

      I honestly don't mind answering at all so don't worry!

      When I woke up after my first op they gave me a cup of tea and when I tried to swallow it came straight down my nose!! Lol

      I think maybe a nerve was damaged in the op? I do know I have trouble swallowing . I think it's to do with a variety of things but with me it is actually the muscle I think that pushes the food down. I always get a glass of wAter when I eat and basically force it down. I tend to choose softer foods just to make my life easier as I would be hours trying to eat a big burger lol. Don't get me wrong, I have a massive appetite ,my ex husbAnd used to call me a gannet, I just try to make it easier by choosing softer foods. So my problem is the swallowing . Not the food going down.

      Nic

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