Hi there, if anyone would like to share their experience...
Posted , 8 users are following.
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]
0 likes, 9 replies
JEM
Posted
JEM
Guest
Posted
You can contact me anytime.
:arrow: Moderated. Please use this site to comment/communicate.
chicago6344
Posted
Heller
Posted
Mystified
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JEM
Posted
Emis_Moderator
Posted
I have had to remove your email address as we do not publish personal information on the site.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
annav
Posted
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
Alibabes
Posted
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