Myxopapilliary ependymoma

Hi Mossmama and a very warm welcome to the online community

I don't have the experience you're looking for but I noticed that you hadn't had any replies yet.

I typed 'myxopapillary ependymoma' into the search bar but unfortunately didn't find anyone else who has posted about this type of tumour. However, replying to you will 'bump' your post back to the top of the discussions list where it'll be more easily seen by anyone who does have experience with this type of tumour but just hasn't posted about it before.

Wishing you all the best with your surgery and do come back and let us all know how you get on.

x

Thank you! Much appreciated x 

Hi Mossmama,

I had the same diagnosis 7 years ago and have been through several surgeries and some radiotherapy. Happy to answer any questions you might have 

Hello Mossmama

I know you posted this a year ago but i too have Myxopapilliary Ependemoma. I have one tumour in the spine which was 7cm and one in the ‘horses tail’ of spine. I had an operation in January of this year and they removed most of the 7cm tumour. The tumour in the horses tail is inoperable as they cannot get to it for the nerves surrounding it. I am 8 months post op and still in pain. Today I find out if the tumour has grown since an ‘urgent’ MRI was done in June (my consultant had lots of holidays/Covid/sickness so it has been impossible to get my results). 

How are you doing? Have you had surgery. Would love to chat with you as I cannot find anyone else with this diagnosis and while there is information out there, it is more to do with the brain rather than spine. 

best wishes, Sarah