New Here, Newly Diagnosed

[nightswimming]

Hi everyone,

This is my first time posting here. I found out this past week that I have a 4 cm myxopapillary ependymoma from L1 to L2/3. I am 27 years old and this was discovered after two MRIs done on my brain and spine (one with contrast and one without). I was sent for the MRI by my family doctor after I started having abdominal and pelvic pain this past June. The pain then started travelling down both of my legs. I am no longer in pain, but I do get odd tingling sensations. 

I met with a neurosurgeon this week and he wants to have the tumor removed this fall, surgery date TBD. 

As I am so new to this, I am looking for any advice I can get and also to connect with others who have gone through the same thing. How long did it take you to recover from surgery? The neurosurgeon expects it will take 3-4 months. He said I can e-mail/call him and his nurse at any time with questions, which I plan to do this week. What kinds of questions should I be asking?

I appreciate your responses.

Thanks

[Bird]

Welcome, night swimming! Sorry to hear about your diagnosis. There is a Facebook page that is a lot more active than this group, so you might want to try connecting there as well.

www.facebook.com/groups/48390166351/

In the meantime, I would suggest choosing your neurosurgeon carefully and plan on being patient during your recovery! I am 7 months post-surgery and am doing exceptionally well. I do still have odd sensations, but I am fully functional. I walk normally, exercise regularly, can play the piano, etc. So I'm very thankful!

[Bird]

Welcome, night swimming! Sorry to hear about your diagnosis. There is a Facebook page that is a lot more active than this group, so you might want to try connecting there as well.

www.facebook.com/groups/48390166351/

In the meantime, I would suggest choosing your neurosurgeon carefully and plan on being patient during your recovery! I am 7 months post-surgery and am doing exceptionally well. I do still have odd sensations, but I am fully functional. I walk normally, exercise regularly, can play the piano, etc. So I'm very thankful!  It can be tough for a while, but there is life after these tumors!  

[nightswimming]

Thanks for the link to the group, Bird!