Hi there.
I was diagnosed with a stage 2 intermedulary ependymoma in jan of this year so certainly not the worst. I had surgery last december to remove as much as they could of the tumour. Some has been left but my prognosis is that I won't require further treatment until the tumour re-grows at which point I will have surgery again. I feel very lucky in that respect and it could be years away. My issue is that I was never given any expectations of how I will be. I went into surgery being told it was a biopsy and would return to work within 6 to 8 weeks. It was only through chance that a nurse told me they were going for removal a couple of days before. I came out of surgery with no feeling from the chest down. Everything worked I just couldn't feel it. Over the past nine months I have progressed well and can walk short distances. I still have limited feeling in a lot of my body. I have extreme pain all the time and am only able to function with massive amounts of medication. I have been told so many different things from people I have met along the way. I was completely unprepared as to what would happen and how I would recover. Thankfully my work have been wonderful and I am still employed just now - without pay - however that may change depending on the company stance of my likelihood to return to work. I know we are all different but can anyone tell me if they have the same condition and what has your recovery been like. Did you ever get back to normal? If so how long did it take? If not what did your new normal become? I can cope with anything if I know what to expect but no one seems to be able to give me any information. I have a very physical job. I want to know if the reality is I won't be able to go back. I just want to prepare myself but just can't find anyone in my situation who can tell me their experience so am hoping there is someone out there that can help.
It would be great to hear from you if you have experienced similar circumstances and can answer some questions if possible. Many thanks.
Hi and a very warm welcome to the online community
I'm sorry that I can't answer your questions but I noticed that your post hadn't had any replies.
I typed 'ependymoma' into the search bar in this group but didn't find any previous posts mentioning this. However, if you alter the search filter to 'in anywhere' rather than just 'in spinal cord tumours' you will find a few posts on this subject. I'm not sure if they'll help you or not but you could take a look through them.
Wishing you all the best
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
