Has Anyone Here Been Diagnosed with Paraganglioma? Looking for Insights

[Zanzibarz]

Hi everyone,
I’m not looking for medical advice, as I have an appointment with a consultant in a few weeks, but I’m curious about something. Has anyone here been diagnosed with paraganglioma? I recently had an MIBG scan that hinted at this possibility. I'm just trying to gather some insights or experiences you might have had. Thanks in advance!

Hi I had a paraganglioma tumour removed last year. I am happy to answer any questions you might have or help you in any way as its really overwhelming and not a great deal of information out there. Happy to direct message if you prefer to.

@pimmsoclock24 Thanks for you reply, I just PM you I hope you dont mind. Thanks again