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Cyberknife Treatment for Glomus Tumor Jugulare - Middle Ear

Posted , 3 users are following.

karen01069
karen01069

Hi

I was diagnosed with this tumor 3 years ago and haven't had any treatment as yet.

Has anyone had the Cyberknife treatment for this tumor in the UK and if so where did you have it and were the results good.

Many thanks.

0 likes, 11 replies

11 Replies

  • d19606
    d19606 karen01069

    Posted

    hi i noticed you havnt been on for a very long time, and i hope you are doing ok and had something done about your tumor.

    i also have a glmus tumor i found out in December but i havnt had anything done yet. i started with pulsitile titinitis over two years ago and was fobed off all the time by gos sayi g i had i fection to im poking it.

     finaly i went to see ent i had a picture taken of it with a small camara in my ear last friday and she showed me the pic my tumor covers all my ear drum its al red i was shocked as i was expecting it to be a bit smaller and would at lease see a normal eardrum with my be a tiny redness maybe at bottom.

    anyways im having a ct scan soon with contrast and i had an mri scan in january. the weird thing is it didnt show up in the mri scan.

    im worried about whats going to happen next and i cant find anyone with what iv got its so hard, most have either wrote on forums and then no ones been on them again for years or i dont get an answer.

    im hoping youl get an email that you have got an answer on this post as i do on other posts. hope you can let me know how you got on.

    • karen01069
      karen01069 d19606

      Posted

      Hi thanks for your message and sorry to hear you have this tumor too. I haven't had treatment yet but hoping to have either cyberknife or gamma knife as full surgery is too dangerous from my research. I am having another MRi soon in cyprus finally with results in English so I can send to different neurosurgeons in several countries for advice. Ct scans are not usually as clear as an MRI with contrast. It's hard researching treatment as this tumor is so rare the reason I have done lots of research worldwide. My symptoms are much worse now and I take steroids to help. My first indication of this tumor was an ear infection in 2005! Please don't worry the main thing is that it's slow growing and treatments are better now than previously. Do let me know how you get on 😊
    • d19606
      d19606 karen01069

      Posted

      you need to see an ent in england. iv been told i can either have surgery depending on how big it is or laser. im havi g a ct scan with contrast to see how big it is. i had an mri scan and it didnt show anything up so the mri scan cant be that good for them as the dr can clearly see it just by looking in my ear and iv seen it on pic so its deff there and big enough to cover the who,e eardrum and still the mri didnt show it up. so i asked the dr why this was and she said that mri isnt good at looking in middle ear. that what she told me anyways.

      shes told me iv got to have ct scan with contrast.

      to see it clearly and to see how big it is. she said if my tumor is small il just need laser but if its biger il have surgery. iv read of others having surgery and they were ok. i went on a forum with people with titinitis problems and one women came on and told me her son got his first at seven then again at 16 then again now hes hqving a ct scan hes 21. no one else on the forums had one but shes helpfull as in hes had small ones and they have been removed. iv read of a man who had a large one and he had his removed by surgery and hes doing ok. all i know is wether surgery or no surgery youl end up havi g the problems the same. if i was going to end up eventualy deaf with paralised face  not be able to swolow and god knows what else from not havi g surgery then id rather have it and at least just have less syptoms that will get better. as if you do notni g itl get alot worse. i read radiation dosnt do much to it so thats rubish iv read  a post of a woman whos old who had it and it did nothing, i dont know much about whats going to happen with this tumor only that my ent dr said il either have surgery or laser. the surgery would be in sheffield the laser in doncaster. all i know is i want it out i dont want a tumor that keeps growing i do t care how slow it is. i want it out. il just have to deal with what happens. im more scared of the ct scan with contrast than i am the surgery. i trust the drs to do whats best. i dont trust that ct scans are good for us. with all the radiation that is sent through them in to us plus the contrast. iv had the pulse in my ears for more than two and a half years as i can remember but it could have been longer i just havnt kept dates iv been going drs since 2014 conplaining plus it takes years for them to grow and get noticed. well they recon they cant see mine on mri so i dont know why other than it must be small. my dr just said i have to have ct so iv given in and said on as i was suposed to have ot in january and chickend out of it.

       

  • d19606
    d19606 karen01069

    Posted

    is cyber knike the laser? its just my ent dr said i may have the laser and theyl just open up my ear srum and just burn it away.
  • d19606
    d19606 karen01069

    Posted

    sorry about the mistakes my ipad is messed up plus i have dislexia sorry.
  • karen01069
    karen01069

    Posted

    Hello again

    Its sounds like you have a different Glomas tumor so you will be able to have the laser surgery through the ear and the CT will show it better for you. Don't be nervous about the CT, the contrast only makes you feel warm and also I found it less stressful than an MRI scan as its not as noisy and I didn't feel as 'trapped' in the machine either. Do brave it and have your CT scan it will be worth it to get your treatment started.

    There are several different types of this tumor (5 I think in total) and I have a Glomus tumor 'JUGULARE'  (paragangliomas) which is attached to the jugulare vein which has affected my facial nerves, balance, dizziness, whooshing tinnitus and I am completely deaf in my left ear etc. and it can't treated with Laser. I had several CT Scans before my first ear operation in 2010 and they thought it was a polyps and an ENT surgeon tried to remove during surgery as they went in through my ear and then realised it wasn't a polyps at all and the operation was stopped straight away otherwise I would not be here now to tell the tale smile My tumor is seen better on an MRI with contrast but it was the biopsy they took during the ear surgery that gave the true results. My tumor requires three surgeons including a neurosurgeon (about 11 - 15 hours operation which can take a year or so to get over) and I am too old for this surgery. They rarely remove this particular type of tumor fully - only the top surgeons are capable (in the USA they have stopped doing the full surgery) and usually have to leave some in so as not to damage and cut too many nerves and it often grows back unless you have the steriostatic radio surgery ie Gamma Knife or Cyberknife (this is not the same as the old radiation) So I am hoping to go for the 'steriostatic' radio surgery as it kills the tumor and stops the growth and then with many it reduces in size over about 2 - 6 years. I want the right treatment and only 'once' if you know what I mean rather than becoming even more disabled.

    You are lucky being based in the UK as there are many more treatment options, there were no treatment options here in Cyprus when I was first diagnosed. I am hoping to go to either Germany, Manchester or Bristol in the UK so once I have my MRI in Engish (all my scans been in Greek so far). ENT are no help with my tumor - I have seen several already here in Cyprus. The Neurosurgeons seem to know much more.

    I wish you well and please go for the CT scan. Maybe ask them for a sedative or something to relax you first which I am sure will help you get through.

    Cyberknife looks amazing! The next thing that looks good is Pro ton Beam therapy but its only available from end of 2016 in Cardiff Wales for private patients.

    Best regards

    Karen

    Emis Moderator comment: I have removed the link as users can easily find the information using a search engine rather than linking to a specific website. If users want the specific link use the Private Message service to exchange.

  • d19606
    d19606 karen01069

    Posted

    hi my ent dr isnt sure waht tupe my tumor is but she said by the look of it in my ear she thinks its a small one, but if its teh jugular one like yous she said im havi g surgery to remove it in a hospital in sheffield. im thinking it may be like yours as i get pain in my neck and shoulder sometimes and my ear feels full and i cant hear right in it, its my left ear.

    im 47 in july so i dont know if thats young for this tumor.

    i get tierd all the time to been like this since last spring now. and i get dizzy to, but when i mentioned this to the ent she said it wont be becouse of the tumor i have.

    iv just had to do a round of urine samples in large containers night time and morning for tests for a homone. the pulsing i get i can even feel it not just hear it.

    could i ask do you have a lump in ypur neck from ypur tumor? or anythi g else besides what you mentioned. i dont have a lump thats noticable but for a few years sometimes when i swollow i can feel a lump on that side.

    i get heart palpatations to.

    i cant aford to go private or id have the pro ton beam to iv heard of that.

    im scared to death of surgery iv had a few and i almost died several years ago from blood loss from having twins by c section scared me so much that im now so scared itl happen again.

    dredd going back after scans. im hoping its small and not so much trouble.

    i hate all the long wait for everything but compared to you i havnt waited as long.

     

    • karen01069
      karen01069 d19606

      Posted

      Hi

      I so understand your worries regarding surgery. I had an emergency C section and was scared to death - the reason I only have one daughter. I also had a gall bladder removed a few years later, but after the C section scare i took my time researching the surgeons and waited an extra 9 months to have the surgery once I had found a surgeon I felt confident of.

      Your age is about average for this tumor and also its usually females and the left ear too. I have high blood pressure with it but no lump as yet, but do get palpatations but this can be due to changes in hormones in your 40's not the tumor itself.

      I am surprised your ent says being dizzy isn't part of it as any fullness in your ear will cause balance and dizzy problems. Some days I am not as bad but other days when my ear seems fuller it gets worse. I use ear drops regularly but my bad ear doesn't product much wax now or I should say it can't get out because the tumor is in the way smile

      I think everyones symptoms vary depending on the size and type of glomus tumor and thats why treatment is individual to you. I hate scans of any kind and waiting for results. The CT scans I had I waited about a week here for them as it was the general hospital (like an NHS one) but I am going private for my next MRI and the results will be given to me within a couple of hours which I prefer rather than the dreaded waiting time.  I see you are from the Yorkshire region - I used to live in Warrington. 

      I think the main thing is to get your CT scan done and have something to relax you before hand. Then at least you will know. It doesn't sound very big if you have some hearing. Its hard with this tumor like you said before as its so rare. About 1 in 1.3 million have it in the UK which is such a small number which is the reason I started researching around the world to larger countries like the USA to find more people with it. Do keep in touch and let me know how you get on. 

  • d19606
    d19606 karen01069

    Posted

    hi yes il let you know how i get on maybe il end up with same as you, and if i get something done and im ok then you know you could use the same dr.

    i just think that the doctors would send me to the best hospital and not just send me anywere. i think il be ok im going to have to trust the drs. iv got no other choice .so you used to live in uk, hope you find a dr and get things done. why havnt you had something done yet if you have had it so long?

    must be hard being in a country who isnt very good at this tumor surgery .

    so were do you think youl end up going for yours? id have thought that a consultant who deals with brain tumers and what not would be a good dr for you in your country as they take tumers from the head. and still have to watch for critical nerves and stuff. maybe you should look for best surgeon  in your country your in that deals with brain tumor. i get pains behind my eyes to and in my cheek and nose. i dont know if its the tumor or somthing else. hope things go ok for you.

     

    • d19606
      d19606

      Posted

      hi i haad my tumor taken out on the 27th of june, it is a paraganglioma its been sent to sheffield for testing, and what not,

      im deaf at moment and iv just got over having a terrible ear infection so painfull worse than labor pains.

      but they got it out and iv got no problems exept ,y left tonsil is painfull when i  swollow dont know why. got no pulse sound anymore but cant hear as yet dr said my ear canal closed cos of infection. they did a good job and i had it done at doncaster uk.

    • karen01069
      karen01069 d19606

      Posted

      Hi 

      So pleased to hear you have had it removed ok smile and I wish you a speedy recovery. It takes time to get over full surgery and you must be relieved its now gone. 

      I am having stereotactic radio surgery (non invasive) in November for mine here in Cyprus. 10 minutes a day for 30 days. Its 4 hours travel time but worth it I think. It will stop it growing and eventually shrink it so reduce my symptoms. Not going for full surgery as been advised I am not suitable for many reasons and I can have this done here.

      Do keep in touch and let me know how you get on with your recovery.

      Very best wishes to you.

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