glomus jugulare tumour

[nh_user_20756]

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

[anon87974465]

I have the same tumor that you have. I have had only gamma knife on it. Since then things have gone down hill. I have now got tn.i have had to quit work. I get confused,facial pain,high blood pressure and the list can go on. None of the dr. Can not really help me as do not know much about this kind of tumor. Just keep giving me meds. Your form gave me more answers than anyone. I now understand why my PCM wants to do a lung scan. He is the only one who really tries too help me. Thank you for the insight on what may come next.

[nh_user_20756]

HI Danni

Glad to help. Forgot I had written that-a few years ago now. Hope you are feeling OK

NIcky

[anon87974465]

How are you doing now? What should I be prepare for? This whole thing is starting to take it's toll on my marriage and me. Where did you get all your information on this tumor? I'm sorry to be so noise but I am so lost and have no one to talk to. I understand if you do not want to answer. 

[nh_user_20756]

Hi Danni.

I am fine and work normally every day-to the extreme actually. The tumours are still there-one very obviously protuding on my neck but I just dont think about it. If I was too think about it thats when it will start to affect your mind. I was married but am now single-nothing top do with my tumours, just his inability to stay away from womens websites lol. 

I have had this illness noticaebly re symproms etc since I was 16. Am now 41 and go for 6 monthly checks. My information I suppose came from doctors but try  not to google as that is not good. I know eventually they will get me but I could go out and get run over tomorrow by a bus so I cant let my mind go there. Also the operations have advanced so much since I first had my ops-they have said if things stop working etc they will operate but only if absolutely necessary as is so dangerous. The way I cope is to keep myself occupied and do not let it get inside me head as that is when the depression etc would set in. 

I dont mind answering at all by the way-anything to help. Where are you from by the way?

NIcky

[anon87974465]

I live in South Carolina in the United States . Everything has happens so fast for me and my family. I was never sick before this. I am afraid it has gotten the better of them. More so than me. LOL. But I am the type of person who wants to know what to expect. My Dr. Has never seen these type of Tumors and is reading up on them for me. We are just playing a waiting game to see what comes next. I already told him I will not go thru Gamma Knife again. It may have been just me as the side effect have not stopped yet. I hate not being able to work. My tumor has not changed at all. And neither has the symptoms. So I am just in limbo. It will be nice to get my life back in controll. I am sorry that your marriage ended like that. You sound like you have yourself together. Sorry to hear about the tumor in your neck. But you sure do have some great Dr. Please take care of yourself.

[nh_user_914347]

Hello nicgill, I just found this forum and like you, I am so happy to find this forum. I was diagnosed with Glomus Jugulare on 21 Dec 2015 which has blown my socks off. I am so sorry to hear about all the difficulties and trauma you have gone through because of the tumours. I do hope things are better for you now. I am not sure myself what to expect as i had never heard of such a tumour until a few days ago and my main symptom was a buzzing in my ear. I haven't spoken very much with my doctor about it as I beleive he was being kindly sensitive to the news he was going to give me and rightly so advised me not to scour the internet. I didn't take that advice. It's all I've been doing in order to prepare myself for my next visit in order to have all questions answered and to undersatnd fully what may lie ahead of me. 

I would be most grateful for any advice you could give me if you don't mind as I still don't know what to make of it all as I'm still processing the news. 

[nh_user_20756]

Hi Christine

Im sorry to hear of you news and certainly will help you in anyway I can. Have to agree with the Dr though about the internet. I do the same and really doesnt help at all lol. My symptoms started with the ear buzzing so the good news being yours has been diagnosed pretty soon. Unfortunatley for me mine wasnt diagnosed until a couple of years after. Give me a shout if you need to ask anything anytime

Thanks

Nic

[nh_user_914347]

Thank you for replying and for your support. Your message brought tears to my eyes as you responded so quickly. I appreciate it so much. I won't bombard you at all with questions as you have enough to deal with. I can't thank you enough as it's so lovely to know someone is there who has been through this & I don't mean to be insensitive at all by saying that. That is the last thing I would ever want to do. It's unfortunate it happened to you also and I'm mindful of that. 

As it's early days for me, I will be learning as much as I can and if you wouldn't mind it if I could pop back and pick your brains (pardon the pun) if I am stuck on something I would be very grateful.

Thanks a mil again.  

 

[nh_user_20756]

Hi Christine

you can ask away-I honestly don't mind. I never think about my illness  so it honestly doesnt bother me -you ask whatever you want.and I will try to help best as I can (where do you live by the way)

Thanks

Nic :-)

[nh_user_914347]

Hello NIc,

Thank you. I couldn't access the site yesterday to respond. I'm from the Republic of Ireland. I'm a stone throw away from you as they say.

My obsession with the internet is done & my obsessiveness with the news is done and dusted too. Fair play to you for dealing with your illness so well. Thumbs up. I'm accepting every social invite going and not wasting time anymore going over the news. It's too tiring and doesn't serve any purpose at the moment. 

My next step is to present a 24 hour wee sample to the hospital lab to determine if the tumour is a leaky one or not. If I remember correctly, the test will check hormonal levels which will tell if the tumour leaks or not. I didn't catch all of the information given on the day. I remembered enough I think. lol. I wouldn't mind messaging with each step to check the similarities if that is okay with you as there are cancer genes in my family but nothing like this type of non-cancerous tumour. It's a head scratcher for me.

I had other symptoms too in the past such as dizzy spells which are not so frequent now and I was given meds for vertigo which I didn't take as I'm not a meds person. I can suffer with very bad headaches occassionally and mild ones occassionally.

I have other symptoms such as confusion which I don't know are related or not as I didn't discuss this with the doctor. I had a pins and needles down the left side of my body for a spell which have begun to come back. I was tested for those a long time ago by way of an ECG for heart check and elctrode clips attcached to the tips of my fingers to check for Carpel Tunnel Syndrome and  all clear on both counts.

 I have blown off a lot of symptoms, achy body, body joint pains and a heavy head putting them down to getting older or female hormonal stuff as I am almost 48 years old and plus I am a smoker.

 I also have a lump under on one of my feet which may be a veruca (don't know how to spell that or if it's spelt correctly) but I will get that checked out as I didn't think to mention any of what I have written in the last paragraphs to the doctor. In general I wouldn't be a go to the doctor person. I would be very slow to make appoinmtments as I am generally in good health apart from the odd sniffle that lemon and honey would sort. The symptoms I've blown off are turning into a shopping type list as I am not leaving anything to chance now as they may all be connected or not.

Have you had any of the above symptoms? 

 

[nh_user_20756]

HI Christine

Not a problem-glad to help in any way I can.

(I actually had one of my first MRI scans in Blackrock clinic as they didnt even have an MRI scanner in Belfast back then (25 years ago lol).

I forgot about the tumour leaking thing and you have sortve vaguely made me remember that-I just know I have always been advised never to have children re the hormones and I was never allowed to go on the pill or anything like that. 

My tumours are genetic and came from my nannies side but are not cancerous with no link.

AT the very start I had bad dizzy spells-just like vertigo and went to the GP who unfortunately for me gave me a couple of tablets to help my balance and when it went away it was forgotten about-that would have been one of my inital symtoms-was after that my voice got huskey, lost part of my hearing etc. Slowly one by one as even though these are very slow growing tumours mine was basically a wee frigger in that it sortve affected everything one after the other. It had probably been growing for years and years though.

I dont and never did get headaches apart from after the surgery. I knwo it is hard but be careful not to think everything is down to the tumour. I would be the same when I get pins and needles for eg-I automatically think is it something else but then try to be rational about it.

I am 41 now and have known about my tumours since I was 16. Surgery etc is much more advanced now which is good. After my last surgery when I was 21 they tole me they couldnt operate again but now they say if it  they have to they will.

Im glad you wont look at the internet anymore-is hard but can be very depressing-much better talking to other people like me I hope lol

Nic

(cant do the simley faces here lol)

 

[nh_user_914347]

It's fantastic taliking to you. I'm feeling very lucky to have found you. 

Now for a smiley face lesson (ha,ha) Press shift key and then the colon key just above the question mark symbol from the bottom of the keyboard. Next press the shift key and press the left bracket symbol on the top numbers row and you're sorted.

That's unreal there was no scanner for you back in the day and at 16 too. You've had a right run of it. 

I am taking your advice about not linking everything to the tumour as I probably should have a full health check at this point instead of the drips and drab visits over the years for this and that. I should probably give up the cigs too but sure, Rome wasn't built in a day. It's on my to do list.

I reckon this thing has been growing for years too as the doc did say the scarring on my ears goes way back and like you I never suffered from earaches. I figure as well when the specialist took a look inside the ear canal and saw the bulge and in fairness to him, he sent me for 3 CT scans and 1 MRI. He was in my opinion very thorough. I took no notice of 3 scan visits but the 4th one made me sit up and think something is going on here.

I didn't realise you couldn't go on to have children. That's dreadful. I am so sorry to hear that especially given you were so young  when you were diagnosed. You were hit a double whammy. You sound amazingly strong. You are now my inspiration. Hugs to you.

I must hand in my wee wee sample next Monday so it will take a few weeks to come back as the doc mentioned it will go to Beaumont and London or maybe one of the two places. I can't remember if I heard him correctly but I know he did say both places. I will see him in March so maybe other tests will be performed before March by way of letter notification in the post as he did say my organs would be checked as well and I would need close monitoring. 

Got to run. My son is begging for a lift to the town. Catch up with you later. Incoming smiley faces  

 

[nh_user_20756]

Lol. Hi CHristine. Can do those-its the wee proper faces and I am such an eejet as just found them here on this page!! Only me lol!!

Thats very nice to say and you are welcome any time. 

Your specilaist sounds great-I had brilliant doctors when diagnosed-in fact the one that got me diagnosed was an Dr who dealt in epliepsy and he wouldnt let me leave hospital without finding what was wrong with me. My initial visit to an ENT specialist-he told me I had a cold!! Think someone needed retrained lol.

These tumours in my case are genetic-i think but Im not sure if that is always the case. Me , my nanny and my sister had to give blood say 20 years ago and they went to a lab in Holland(along with many others Im sure)  and about 5 years after that they had found the faulty gene. So my nanny passed it to my dad but it is only if he has a daughter that they develop it, hence me! My sister is fine but gets scanned every now and then-better it was me as she could never have coped. I think might have been the first in the family it ever developed in?

Now if dad had had a son he would carry it but not develop it. Complicated lol. So as they werent sure what would happen to me if I got pregnant they always told me it was too dangerous to have a baby. I had met my husband then (now ex-long story) and he had 3 kids from his first marriage so had plenty of them running around anyway over the years.

I now have my big Golden Retriever Ozzy who is my big baby boy and give me him anyday of the week lol.

I think Christine its just I have always had to be strong as no matter how much I wish it hadnt happened etc it has and I just knew I had to get on with it. Thats just what I have done. I run my own business and just get on with everything really. 

The doctors will want to check your organs as my were and are also on my lungs-again never bothered me and my scans havent changed in 20 years when back then that is what the doctors thought would get me first when they discovered them after my neck ops.

Hope your son appreciates his lift-my car is basically a dog taxi !! Lol

Nic 

[nh_user_914347]

Right. I'm back. The bacon, cabbage and turnip is on. Lovely. I'm starving.

As for my son, well the lift did me a good turn. He wanted to put his xmas money into my bank account as he then wants me to buy him something from Ebay as he's too young to have a bank account & bank card but old enough to lodge. Lol So I had a brainwave & caught him to put extra money from me in to pay the bills to be debitied while he was going to the bank as I'm too mean to park the car and pay 1 hour street parking rates for a 5 minute task. It was a win win spin. 

You shock me every time with what you say. It was the ENT specialist who found this and yeah, definitely, the ENT you saw could serioulsy have done with re-training. But in saying that also, this thing isn't that common and yours was so long ago that I could understand how it was missed. I went looking for cases in Ireand and only found you. There seems to be a higher number in the states. Maybe I haven't looked in all the right places or put in the right search criteria but I can't be bothered now. I got you babe. They say we're young and we don't know....tra la la. Sorry. I couldn't resist. If you don't know the song I'm singing then......AWKWARD. Lol. I'm sure you know it (hopefully anyway).

On a more serious note, I love the sound of the epilesy doctor that you saw. He sounded very passionate about his work and thankfully he found the cause. Brilliant. I know the news wasn't good but all the trouble he went to and with the tests going to Holland and finding the gene is amazing. Again I was shocked at the time span it took to find the faulty gene after the tests went to Holland but it is incredible given the year you were diagnosed and here you are running your own business and getting on with things. Girl, a pat on the back is soooo deserved. And your ex husband situation also. That bump in the road needed more than a stiff drink I'd say. Break ups are never easy. Again, I am sorry to hear that.

I had a job lined up to start next week and I have put it on the long finger. I was disappointed to have to make the call. I couldn't take a job knowing I would be out of work on a regular basis. I would feel bad more for the employer more than for myself as I would have to be reliable for the job. Se la vie.

I've learnt loads from you already what with the passing on of the genes through generations from males but turning up in females. It has me thinking now about two particular aunties of mine, one living and one gone yonder, if they could possibly have been passed on the gene as my case is the first in the family to be diagnosed and both aunties suffered with head problems. I must look into that. 

I think after reading your message, I will have my children tested. I never thought of that until now or that it could be genetic. Thank you for that information.

When your family members went for tests to find the gene, was it only blood they gave?  If that's all it is, I might ask my siblings to get checked out as well as they have families of their own and their children now have children too. It's like a hornets nest. 

I had to smile when I read that your sister couldn't have coped if she had discovered she was the carrier. Isn't it funny how the copers of this world get the crap and manage the crap very well. In fairness you've carried a cart load to date.  I wouldn't be religious but sometimes I do think that unavoidable life mapping has been planned  for each person from the day they are born as you couldn't make this stuff up or plan for it. 

As for the smiley faces, I've just seen this very second that there is a feature in the message box to add them. . Lots of them apparently. Time for a smiley party. 

Before I go, I am really am just delighted to be messaging with you. The feeling of pressure in my head is gone since chatting with you as I was fairly stressed out with the news. I can't thank you enough. I feel normal again. A big high five to you. 

Christine

 

[nh_user_20756]

I know the song!!! lol!!

Im just glad to help . There wont be many cases as although more common now it is still a rare thing-me especially as I have them on both sides-typical!! That's even rarer.Only me!! America there would be more cases because of the size of it too but not too many at home I think.

Deffo get all your family checked -remember from a mother to a son who then has a daughter in which it can develop-and your aunties might be linked in some way as the ones to develop it. Does no problem to get it all checked. And yes we all just had blood tests-for the lab as thats all they needed-though my sis gets the scans every 2 years or something now.

Sorry about your job-when I was getting my ops, radiotherapy etc I was in and out of hospital all the time. Touch wood I only go now for the odd scan or to see my oncologist every 6 months. They are still there but sortve seem steady (again touch wood) . You can see my neck but If people dont like me the way I am they can turn on their heels and walk the opposite way-to be honest it doesnt bother anyone!!

As for my ex husband-well rid of him I say-was too fond of a certain plenty of fish website behind my back without telling me. Loser!! lol

And like you I also believe your life is planned out. Im not religiouseither in that I go to Church etc but God really got me through that time as I just knew I was going to be OK and felt it. 

Im glad you feel better !! I have my uses then lol 

Nic

I must scan the genetic letter thing from the lab in Holland and email it to you sometime as it will tell you exactly about this faulty gene

Nic  

[nh_user_914347]

I have sent you a private message. I'm letting you know here as I'm not sure if you will recieve a notification directly to your own email address.

Nighty night.

Christine

[nh_user_20756]

Thanks Christine

got it-will reply now-sorry only getting to a PC

NIc

[nh_user_897755]

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.

 

[nh_user_20756]

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