Is there anyone out there who has had surgery for the above? I am particularly interested in hearing from people who like me have had surgery 20+ years ago.
I've had a look using the forum search function and I can see that the term ependymoma has been noted in a few posts however none of them are recent.
I don't know if you may be able to connect with others who have had this diagnosis perhaps through The Brain Tumour Charity forum. I'm unsure from your post how old you are but if you're in your 20s, 30s, or 40s then you may also like to try the Shine Cancer Support forum or possibly the Brain and Spine Foundation.
As ependymoma are rare it may take some time but hopefully, you'll be able to connect with others who have experience with this diagnosis and treatment soon.
Many thanks for your reply Jenn. I am 68 now and had my surgery when I was 43, and am now experiencing increasing problems and want to connect with others who may be in my situation. Unfortunately, as you say, Epenymoma is a rare tumour and it's very difficult to find relevant and up-to date information and help with it. I will try the links you suggest - many thanks indeed.
