New Ependymoma Diagnosis

[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

[nomoremorty]

Hi!
I had a myxopapillary ependymoma removed last October. Recovering from surgery takes time. I went back part time in mid December and then back full time February. The transition going part time to make sure to have time for physical therapy worked for me. My doc sent me a powerpoint about the surgery that I would be happy to share and I also have a list of most questions I asked my doc if you want me to forward it. Only after surgery did they have a specific diagnosis, beforehand they had it narrowed down to 2 or 3 things on me.

Anyhow if other questions feel free to ask. I am not a doctor or anything medical but happy to share my experience as a patient!

[stevieray]

I had the same tumor and same area in 2000. I'd be happy to answer any questions you have.

Steve
[e-mail]