Hi everyone.
I was diagnosed with Myxopapilliary Ependemoma. I have one tumour in the spine which is 7cm and one in the ‘horses tail’ of spine. I had an operation in January of this year and they removed most but not all 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 because of my pain (my consultant had lots of holidays/Covid/sickness so it has been impossible to get my results). My GP has put me on morphine patches which are a waste of time.
Has anyone else had or has Myxopapilliary Ependemoma?
Lots of info in relation to rumours in the brain but no so much of rumours in the spine.
Best wishes, Sarah x
Hi SarahLois and a very warm welcome to the online community which i hope you'll find is both an informative and supportive place to be.
I'm sorry to read about your diagnosis and, as I have a different type of cancer, I don't have any experiences to share with you. However, I noticed that your post hadn't had any replies yet so did a search in the group to see if anyone else has mentioned myxopapilliary ependemoma recently. Although this post is 15 months old, it is from a person describing their own experiences with myxopapilliary ependemoma. You could have a read of it and reply to the poster if you wanted to ask any questions.
How did your appointment to get your scan results go?
It would be great if you could pop something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
