Myxopapillary Ependymoma L4-L5 grade 1?

[esmee]

Hi there!
My name is Esmee, 25 and I'm from a small town in the netherlands.
A few years back I suffered from back pains and nerve pain through my legs, my doctor thought that it was a hernia or that I kinda overreacted.
But after 2 years of complaints and a new doctor, I finally got an MRI, and turned out I had a Myxopapillary Ependymoma in my spinal cord and my nerves got stuck in the tumor. It is grade 1, so not too bad I think? And also, they got the whole tumor out. They did not gave me radiation because it would do more damage to my body.

Then I had to wait a few months to get the surgery, firstly to know what kind of tumor it was and secondly because it damaged my nerves really bad. 
A few days back I heard what kinda tumor it was, but honestly I can't find anyone in the netherlands who've had this kinda tumor and I'd really love to know some things.

Like, the doctor did not have a lot of information for me as if, what the changes are to getting another tumor like this and what happens then.
Can anyone help me out or tell me stories? 

[Julie1]

Hi,

I had a Myxopapillary Ependymoma in 2009 not a total removal the surgeon had to leave what he called the skin as it was attached to my spinal cord. All good for 10 years until a few months ago my Tumor has started to grow again and I need to have further surgery to remove it. Possible radiotherapy afterwards to just make sure.

Hope your going well!

[audj]

I had my Myxopapillary Ependymoma removed in 2017.

My surgeon was able to remove it all. I was told that when it is completely removed there is slim chance of regrowth. I do have to have annual mri (but there is a 2 year waiting list for the mri!) to check though.

My understanding is that with complete removal the chance of regrowth is slim but if some has been left behind there is a greater chance. But I don't know what the chances are.