glomus tumor of middle ear

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hi im wanti g to hear from people who have had or got thses types of tumors. im not sure yet which type i have only found out in december, just got told by ent by looking in my ear that its a vasculare mass behind my eardrum. walked in thinking i needed gromets to walking out stressed and cryi g for months thinking iv got months to live. and tahst beacuse iv googled and thats beacuse the ent didnt tell me anything other than i needed surgery and rushed me out after seeing me for about teo mins i have my next apointment on friday which is over 8 weeks since i last saw the ent which i find personaly discusting if i have a tumor. i got a ct scan apointment in january but chickened out of it as im scared of radiation and opted for mri instead but got a letter sayi g it did t show anytning so im orob going to get told off and told i need a ct scan. im scared but after goigling these masses i now know i have to have it done so tney know how big bad and what its stuck to and what vains and what ever. im such a idiot and wish id not been so scared of ct scan but im just so scared of hospitals and scans.

just wish the dr had sat down and explained things better to me instead she was stood up looked in my ear and walked away sayi g make another apoinment i fohnd that very iignorent.

so as expected iv stressed all xmas and im fedup.just want no tumor and want it out. i. also scared of operations but i no i need to have one. pleade i hope someone else has had this type of tu or and can help me with there experiences.

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18 Replies

  • Posted

    sorry about the mistakes my fingers keep missing the right letters and im on a small pad.
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  • Posted

    i also have constant pulsitile titinitis all the time had it for a few years no e stop geting worse was fobbed of by gps with its infection to stop pocking it to i need grommets which was all wrong. i never pocked it and i got sick of complaining till one da in september i finaly said iv had enough i want to know whats causing the thumping but even thoe the go said theyl send me ent she stil thought it was fluid. since going to drs and hos and having mri ib been so upset that i went back to my gp and he had a good look inside my ear and said as far as he could tell it was about the size of a lossange and he could see above it so it wasnt covering the whole of my eardrum, bu the way its behind my ear drum. and he to,d me results befor ent about mri and said they didnt see anytning. he made me feel a bit better as at least it wasnt so big it did get seen on mri i dont knwow realy. but now im stressing as its friday i go back and i dont know if they even are any good with therse types of tumors or if il have to go further away as they suposed to be a rare thing. and coplicated. even tnoe the ent dr recong

    d when i asked her about the surgery that it was straight faward. duno how if its rae and conected and growing near faciel nerves and others to do with swolowing and what not. just hope some one replyies and knows about theses.

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  • Posted

    A glomus tumour is a benign tumour [ie not cancerous or malignant],but it does need to be removed.      What a shame you didnt have the scan......it would be very efficient at telling your consultant the size and position...essential for it to be removed.         Dont be afraid of hospitals and scans...they are there for your benefit. At your next appointment have a short list of anything that is worrying you to ask the consultant.        Are you in UK?
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  • Posted

    Tinnitus is one of the symptoms of a glomus . It sounds as though its a small tumour so best to get it removed before it becomes more troublesome.    You really need to stop stressing yourself and have some faith in people who are doing their best for you.         A gp would always think 'gromits' at first,but GPs are not experts in everything,thats why you were referred on to an ENT consultant.
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  • Posted

    hi yes im in uk im in rotherham. im scared so much iv stressed all over xmas holidays thinking im going to die and leave my seven yearold twins if the consultant hadnt have been so ignorent and actualy sat down to talk to me i maybe would have had the scan and not felt so scared but instead i googled what she didnt tell me and scared myself more.

    i feel if shes like this again on friday il have to go to my gp and asked to be refered to a hospital in sheffield as i dont want to see a dr who stays stood up wile talking to me then walks off with no proper explanation. ypu cant just go up to a patient look in there ear say you have a vasculare tumor thats why you hear heart beat you need surgery make another apointment and walk off. its left me so scared. iv cryed to my dr since and feel a wreck. i didnt have my ct scan as iv read it causes cancer later i. life and the contrast they was going to give me causes slight malignancy and other side affects that scared me so i wouldnt do it.i just dont scared of hospitals iv had a bad experience with them in past when i had my twins i al ost died at that was at rotherham hospital. dosnt help when that happens to want to get treated there again. plus my freind just had a gall bladder op and died from it theyd nicked her bowel. she was on,y in her thirties. it scares me so much.

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    • Posted

      im going to ask questions and im taking my husband this time as i was on mynown last time thinking i was ok and id be having gromets or somthing. its just such a shocker when your on your own. im hoping theyl be understanding when i go back on friday and il have a scan not long after even thoe im still scared to do it i know i have to. im just hoping that they dont say its to late and carnt have one now as i refused first time. what should i do if teh ent dr is still ignorent with me and i feel im being left to long to get something done should i deff go see my go and get refered to sheffield i just dont know what to do as i do t know what happens in uk with these tumors iv just read about it from american forums and what they do there and all i know is it sound like i should be bei g seen alot faster than i have been.
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  • Posted

    I can understand your feelings. I was told I had a tumour in a very blunt and uncaring way. I thought I was going to discuss my hearing aid. (i lost my hearing with this tumour, because it was not diagnosed for years. No one listened to me when I kept complaining about ear infections, frequent syringing and hearing loss. ) Anyway,  went along on my own, was in and out in 5 minutes, and burst into tears in the street. I was numb. My husband came for me and he was convinced I must have missunderstood. Since then, I have had several MRI scans and a course of radiotherapy. Not pleasant, but I am still here. Like every profession, there are good and bad and since that time, I have had excellent care. Try not to be so scared and ask what your options are and what side effects, if any, you might experience. Good luck and let us know how you get on.
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  • Posted

    hi i went to see ent iv got to have ct scan with contrast. she took a pic of the tumor in my ear with a tiny camara and it covers the whole of my eardrum. its all red. scared me.

    anyways just want to say anyone who has pulse noises in there ear get there dr to refer them to ent to make sure as i went a very long time as my go and most gps havnt a clue about them they so rare. mine just thought id got i fection or fluid or id poked it.. get it checked its more co on in women than men and more comon on left side

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  • Posted

    Well done d     you are sounding more calm.  Hope your treatment goes well.
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    • Posted

      Hi!

      i have a glomus jugulare, in the last seven months I've had two ct scans and three mri's.  I finally get to see the consultant on Friday who I'm hoping will tell me what's going on. It started with Pulsatile tinnitus then vertigo shoulder ache, neck ache, head pressure, hard and rapid heart beat - things that aren't painful but are achy and make me grumpy. I'm dreading Friday in case he tells me there's nothing they can do other than wait and watch. I think I'll scream! I feel Ike everyone thinks I'm a okay and that the Drs don't really think it's that much of a big deal. In the last Sven months I have spoken to two Drs both who could not tell me anything. Now I'm just bored and peed off! Is it normal to take seven months to get a formal diagnosis??

      sorry for my grumpiness!!

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    • Posted

      hi there i had a glomus timor of middle ear 

      i waited six months after seeing consultant to have it operated on

      i had it done in doncaster in june and now feel so much better.

      i did get a ear infection after.

      they told me if it was a jugular glomus one id go sheffield.

      i had one ct scan. im so happy its gone as i just worried all the time about it thinking gosh its cancer its going to come back everything but im just glad its gone.

      were do you live? they are operable as my consultant told me so.

      its just a bit more tricky if its jugluor but i was one who just got the one in middle ear behind ear drum. i hope youl be ok and can get it operated on soon. you must look for a dr who will do it for you as it can be done and waiting and watching is just going to mean its growing . so sooner the better.

       

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    • Posted

      You are sounding so much more confident than when you first posted 6 months ago. Well done you.    Its great to know that in the end you trusted the professionals and now you are able to reassure others in the same position. Fantastic all round. You are a star!!!!
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  • Posted

    Hi!

    I have had the same tumor as you. I had it removed in 2012 and it came back and just had the second one removed last week. I'm unhappy because I still have the annoying pulsing in my ear.

    -- anyway, I just wanted to inform you that these tumors are connected sometimes to genetic mutations and it's good to have a genetic test. Some people with the mutations have many of these tumors and they can happen many places in the body. There is a group on Facebook , if you are on look up pheochromocytoma paraganglioma support -- these tumors have several names .. glomus tympanicum but it's also a paraganglioma, which are related to pheos. It's all kind of complicated.... not trying to scare you.. some people have them bad where it does become malignant , if they spread or come back they say they are malignant rolleyes

    Luckily for us with the glomus tympanicum they rarely spread but it's good to have the test and always get follow up scans. Mine did come back 5 years later.

    Best wishes on your health!

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    • Posted

      I'm sorry -- it's late --

      Sbha ,sbhb, sbhd

      Not the other one!! 😀

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    • Posted

      Hi Tara

      thanks for commenting on the posts 😀 I went for a genetics test a couple of weeks ago and they say they will contact me in about four weeks with the results, I'm fairly sure mine is hereditary as my dad has a carotid tumor in his neck.

      ive been a bit peed off with the whole attitude towards this thing, I've had scans that I didn't need, turned up for appointments where thy don't know why I'm there because there's so little written in my notes, I've been told to google it and attended scans that I've had to tell them where I think they're supposed to be scanning. The final straw was visiting the consultant who really made me feel like I was being a hypochondriac who I then had to chase up two months after the visit to find out what my treatment plan would be.ive got another appointment in a weeks time and they said they're thinking of stereotactic surgery so we'll just have to wait and see what happens. Where are you from?? The consultant I saw in the U.K. Said that in the US they favour removing them but here in the U.K. They are reluctant due to the risks. I'm just bored of mine now and the apathetic attitude everyone has to it. My episodes of vertigo and pressure in my head seem to be cyclical and currently I don't suffer these at the moment I get palpitations and rapid heart beat with the littlest of stress but I don't know if this just me as I don't think paragangliomas of the head are supposed to make you feel this way....but I just don't have anyone to ask so I just plod on trying not to think about it.

      wow having it removed twice must be difficult! How are you coping??

       

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    • Posted

      Me again 😀 Do you know if there's anything they can do about the hearing? I'm guessing I'm slightly deaf because of the pulsing but I wonder if a hearing aid would make it any better? Sometimes being slightly deaf is handy but I'm sick of asking people to repeat themselves 😀

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    • Posted

      omg hope mine dosnt come back i hate operations scars me so much, plus i had a bad infection after so painfull thought i was going to die hurt so much i just sat and cryed none stop for days tears constantly running down my face with pain from my ear gosh never again worse than labor pains.so how did you realise it had come back was it beacuse hospital was monitoring you? or did you start to hear the pulse in your ear.
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