Hi there, if anyone would like to share their experience...

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Hi there, if anyone would like to share their experiences with me about glomus/paragangliomas i would love to hear from you. Im 39, living in the UK, and have had several glomus tumours removed, and it's still ongoing. I also feel quite knowledgeable about these weird things, i dont know if thats a good thing! So anyone wanting answers please feel free to contact me.

Corrina :lol:

[i:bc452b4bce]This message was automatically imported from the original Patient Experience[/i:bc452b4bce]

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  • Posted

    Hi Corrina, My name is June, I'm 46 and living in the UK too. I'd love to hear from you. I've had 2 tumours removed, the 2nd this year and it wasn't all excised as it was in too deep so radiotherapy was also used. No idea yet what that has done. According to my consultant, I probably won't know for 10 years which I think is a little excessive as the duration between the two I've already had is only 4 years. All I can do is hope and pray. Did any of your tumours affect either hearing, eyes, balance, arm or throat? or have I just been very unlucky?

    JEM

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  • Posted

    Hi all, I had a Glomus Jugulare removed in January 1999. I was only 18 years old at the time so as u can imagine it was a very scary experience. These tumors are very rare but even rare in my profile. I'll give you a brief history of my case and maybe it can help you. In July 1998 i became hoarse and gradually became worse, I just put it down to shouting too much. but after a few visit to my GP I was sent to the local ENT clinic here in Dublin, Ireland. They were completely puzzled and called me back for tests over the next few months. In the interim period i got like a buzzing in my right ear (which i now know is tinnitus), when i went back to the hospital for further tests i told this to the nurse who quickly organized a hearing test. I found out that my hearing was almost gone in my right ear. I was rushed to another major hospital for a MRI. The initial diagnose was of an acoustic neroma but later followed that it was a Glomus Jugulare. I had surgery on Jan 19 1999 by a great team of ENT and neurosurgeons. It was a massive operation 14.5hrs a week in ICU week in HDU and 4 weeks admitted. I did not eat for 5 weeks I was on a tube with pretty serve palsy. I have recovered pretty well you would hardly notice anything now unless i pointed it out. The only thing that i have lost is my hearing on the right side which is a small price to pay. I go for regular check-ups and scans. In 2005 there was some growth happening again so my consultant started me on this drug sandostatin Lar 20 mg which is to slow the growth in my 2006 scan it had slowed it down but in my 2007 scan it had grown again. I was wondering if there is anyone out there in a similar situation or has any further knowledge that we could share. It is so difficult to get information about this rare tumor.

    You can contact me anytime.

    :arrow: Moderated. Please use this site to comment/communicate.

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  • Posted

    I am interested in speaking with you. My husband is 43 and was just diagnosed with a 5 cm glomus jugulare tumor, very near his carotid artery. Dont know if we should have the surgery or the gamma knife surgery. We have heard that **** in Los Angeles, CA is the best.
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  • Posted

    Hi would love to talk to you about my experience, have had two tumours removed one still left in skull base an had radiotherapy for this but my treatment is still ongoing..... look forward to hearing from you x
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  • Posted

    Hello Heller I too have an inoperable glomus jugulare tumour and I'd like to know more about your experience of radiotherapy please.
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  • Posted

    Hi. I had my second tumour removed at Charing Cross Hospital in 2007. As they couldn't remove all of it, it went too deep, they used radiotherapy on what was left. The therapy made me as feel very sick whilst going through with it, I felt worse whan I was told more than once they didn't know why it was affecting me so as it wasn't cancer. I had an MRI again recently which didn't show any growth. So the radiotherapy was definately worth going through. If I can be of any help to you, please contact me.
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  • Posted

    Hi JEM,

    I have had to remove your email address as we do not publish personal information on the site. There will be a private messaging service introduced soon which you can then use to contact other users directly or vice versa.

    Regards,

    Emis Moderator

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  • Posted

    Hi It is really nice to be able to listen to others experiences. It is my dad that has been diagnosed, we are waiting to find out what treatment will be recommended. Although it has been suggested that it will be stereotactic radiotherapy. Has anyone had the gamma knife and been treated in the uk?

    I am trying to find out who would be the best neurosurgeon and which hospital has the best experience with this tumor?

    Any info from others would be so useful, bad or good

    Thanks

    Anna

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  • Posted

    I had my tumour removed in 2007, mostly the same situation as the rest of you. I still have a piece of tumour wrapped around my carotid artery but it's too dangerous to remove. As it is growing very slowly, it may take another few years before they give me gamma knife radio therapy.

    I am actually trying to research more into early symptoms, other than the pulsatilla tinnitus.

    Did anyone find that prior to diagnosis that they were having vivid or violent nightmares ? I was told that due to secretions from the tumour that's why I got the nightmares and also did your personality change in any way, for example... Did you become more irritable or difficult to get along with ? I sensed that for a while that my day to day actions were out of character !

    I would be so grateful if as many of you could answer this as is possible .... Please 😀

    Oh and yes, I live in Northern Ireland and also had to travel to Manchester for both my embolistation and subsequent tumour ( partial ) removal. I also have the facial paralysis and palate/ vocal chord damage, and nerve damage to my right shoulder.

    I just would really appreciate anyone getting back to me with their rarer symptoms.

    Alison

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