glomus jugulare tumour

Hi,

I am the mother of a 15th year girl operated 9month ago from glomus timpanojugular C2 IV grade.Tumor take facial nerve and cranial nervs from VI -IX .We were wery lucky to find the right doctors in hospital in Piacenca where she was operated.Now, after 9 month we made MR and CT with contrast and she is free of tumor at all.

They made at the same time plastic surgery and put the part from her stomach on the place were was tumor .She can not hear on that ear but she is still greate with playing piano in the music school .She has paresis that is almost passing .

So ,the medicine is going on.

Hi

sorry to hear about your daughter. I too was very young when I had my symptoms-usually they develop in people in their forties. YOur story is very similar to mine except they were never able to get my tumour fully out. My same nerves, hearing were affected and I had fat from my stomach put into where my tumour was taken out-and a facial nerve graft re my paralysis.

Im glad they got all the tumour out and I wish yous both well. She will recover very well as she is so young .

NIcky

Thank you

It is so good to find persons who can understand.Till now we were alone like lost on the island in the middle of the ocean.

For now we can live peaceful till nex year and nex MR and CT.

Thank you

No problem. Glad to help. If you ever need any advice I will try to help

Thanks

Nicky

Thank you

I would like to ask you a lot of questions but my English is not so good.Both of us and all our family are still under the stress ....everything heppens so fast .From first simptoms to the diagnosis passed only 15 days .On the other side it was realu good that we didn't lost time .

Just hope that maybe it can happend that the glomus will not come back .We have to hope so, but if he comes back still we will be grateful course it is not malignant.My daughter will live and it is the most important thing .

There are so many people with wors diagnosis .So we feel blessed couse we have a chanse and we will fight together .

Hi there all, I'm a new be, diagnosed by ENT, camera down the ear hole and there it was, had its picture taken and everything!! That was December 15th, 2016, had a CT scan about a month later, now waiting for my next appointment at ENT for treatment plan, feel like I have been left in limbo, glad we have the Internet, it knows more than my GP, any suggestions about the main questions I should ask ENT, was thinking of going to my GP to have the 24 hour. Urine sample done, so I get a head start on proceedings. My symptoms were whooshing sound in my left ear about two years ago, vertigo, palpitations, hot flushes day and night, do have a list of stuff that's wrong with my body, but do not know which are related to this tumour.

hi i had the same with the heart beat sounds in ear for a few years befor it got finaly noticed, i had my operation in the summer and the only thing after was i got a nasty infection in my ear wile recovering and it was terrible. now im due to go back see the dr as i last seen them in august, i dont hesr that well in my ear and latly been getting a funny smell at back of my nose dont know if thats anything.. i only have a scar behind my ear cant see it unless i pull my ear down. my ear is numb in olaces still and i hear a white noise that dosnt bother me as rather have that then a woosh woosh all the time. i dont get palpatations anymore since its gone even thoe dr recond it had notni g to do with it. dont worry about tje operation i did and i was only in over night and then i went home, i thought i was doing well till i got the infection then i thought i was dieing it was so painfull. just think like this your ear drum is very small and so that will be to. mine was behind my eardrum and just starting to curve round or somthing i just didnt understand her that much. my family dr new nothing about them but the ent dr new alot. i just hope it dosnt grow back or i get another one some were else. youl be ok dont worry i did and thought the worst and it wasnt that bad in the end.

 

Thanks for the reply, how big was your tumour, there thinking mine is about 2cms, I Google because I want to know everything, I was the same when my husband had hpv+ tonsil cancer last year, he on the other hand does not want to hear any of it as he says I am scaremongering, I just hate not knowing, I have even looked for a hospital that I want to have surgery at, I want to go to Salford as it has an excellent reputation. I live in North Wales, where are you?

hi i cant remember how big it was i just know it ended up bigger than they thought it was when they went to take it out. but all was fine in the end.

dont bother about wanting to go salford hospital i wanted to aswell but i was fine my ent dr had seen them befor and i trusted her. i live in south yorkshire and had my operation done in doncaster. they wwre great cant fault them at all.everything went ok and just glad its out. just have a chat with your ent ask if they have done operation befor. remember they do alot of ear operations. just that with this its a tumor  full of blood and have to be carfull round nerves and stuff but they  do operations in that area all the time just that glomus tumors are more rare.youl be ok.

Thank you, my ENT said that if I was having radiation I would be having treatment at Glanclwyd, if I was having surgery it would be Liverpool, we are so lucky to have the NHS.

hi why do you have to go liverpool? my local ent department at rotherham did mine it was just that i had to go doncaster to have the operation and i wouel have gone sheffield if it was a jugular tumor is yours a tipenicum ir a jugular? so no one in your area can do the op if thats so its terrible. mine was done by a dr called susan douglas and she did great so if she can do it and she was young to look her up. she just said she wouldnt do it if it was jugular and sheffield would be the place id have gone.

Mine is a jugular, that's as much as they told me, I have to wait and see what the treatment plan is when I see them a week today, will let you know the outcome. Liverpool is about 80 minutes drive away for us. It definitely puts a different perspective on life when you get something like this happen to you.

hi mine was tipenicum i think its spelled that way. so smaller higher up than yours ypurs will be coming up to there ear from jugular vain. i would have had to go sheffield if i had that one.

i just hope i dont get it back or get a jugular one. ypur is a bit more complicated but iv read alot on it and read alot of storys of people who had the op for it they came out other end ok bit had a bigger scar than i had theres a website i used to read il go look for it and il post it if i can for you.

Well its been while since I reported in, ENT surgeon wants me to have my Glomus Jugulare tumour removed surgically, I am yet to speak to an onocologist re rads, still in two minds which treatment to go for??

hi go for the op i would have gone for op if id have had the one you have, get it all out. as going for rad can make it turn cancerus later thast what i read some were anyways. just ask the dr whos doing it how many ops they have done and what the outcome was for the other patients.

let me know how you get on.

i think knowing its all out is much better thought. I hope mine never grows back  and dosnt grow back were yours is.  just hope mines gone for good.

up till now i feel pk exept  i keep getting a drip in to my windpipe thats anoying and teyi g to cough it up all time, im thinking its because of the operation but i dont know i mentioned it last time i saw my ent dr but she said it wouldnt be the op that did it but i think it prob is as i never had the problem befor that.

Hi, can I ask did you have the op to remove the tumor? 

Hi ,Sarah,

Yes.

I had one operation 3 years ago + again last December.

If you need more information let me know

Hi, 

Was this the first options the specialist offered you? 

How long did the op take?

What was the recovery period?

Hope I haven’t imposed with too many questions 

Thanks 

Hi Sarah,

You are not imposing at all + i'll be happy to answer any questions.

I was very fortunate to be diagnosed in the very first stages when my tumour was less than 1 cm.

Yes the specialist asked me to get rid of it before it gets bigger and troublesome .

I spent one night in the hospital +slowly started daily work the day after.

it was the only option that the specialist gave me without giving any choices with respect to Gamma knife + radiation.(having taken into consideration my age + my condition)

If not diagnosed ,it may involve the facial nerves +face deformities.

The first time it took 90 minutes + the second time it took 4 hours.

The same procedure takes much much longer in Canada+America

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Hi, 

Thank you for your reply. 

My tumor is currently 25mm x 17mm so I’m hoping they offer the surgery asap.

I have a meeting with the specialist on 21/2.

 

Sarah,

good luck with the operation +let us know of the outcome.

God Bless

Sarah,

Soon i'll  UN SUBSCRIBE  to this site,as they tend to delete +moderate comments by people in health issues which is totally ridiculous.

Their terms and policy are very unhelpful for users who are in need.

I'll remain subscribed until your meeting with the specialist