glomus jugulare tumour

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

I just raed your comment on patient over a year ago, my mother was diagnosed with this type of tumor in south carolina currently so can you recommend us doctors who best can help us with this tumor .... hoping they helped you with your case, did radiation help you at all?

Were in a very stressed moment need your opinion and experience in sc pls.

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

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.  

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 :-)

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? 

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)

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  

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 

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

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  

Nighty night.

Christine

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

NIc

Hi Christine,

You can sse my comment in this page which i've recently posted.

Tell me more of the lump under your foot.

i seem to have something similar on the arch of my sole.

Thanks