More resources… CERN Foundation

Today I would like to share another resource for everyone out there trying to understand spinal cord tumors – CERN Foundation

I first learned about the CERN Foundation because some of the other folks on the SCTA Facebook page mentioned it. The CERN Foundation focuses on one particular type of spinal tumor – ependymomas. Their site has a wealth of information about these tumors. They provide links to support and resources for people coping with ependymomas. They also help to put people in touch with research centers if they are interested in taking part in clinical trials.

 

 

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3 thoughts on “More resources… CERN Foundation

  1. Hi

    Thanks for sharing.

    Has your biopsy results come back now? My tumour was an Ependymoma a grade 1 which is slow growing.

    They are rare.

    Hope your ok and that your Neurosurgeon is doing the surgery soon as advised.

    Take care
    Angie x

  2. Xi Mena says:

    Angie,

    Thanks for asking! Got the results on Friday. Biopsy indicates that it is a schwannoma which is good news because it is a tumor of the nerve sheath and not the actual nerve. That said, it still needs to come out and still causes many of the same problems as an ependymoma… Trying to get the surgery scheduled. They had told me I was tentatively down for December 13, but now it seems they may have double booked. Hoping to get something firm tomorrow. In the meantime, I am trying to prep things at home/work for the pending surgery/recovery.

    As for this post, actually, I posted it specifically because I read on your page that you had an ependymoma and knew that this resource might be of interest to you. Hope it helps. The book that I mentioned in the previous post also deals specifically with ependymomas, so you might want to check it out. Dawn, the author, is pretty amazing (and accessible).

    Hoping you got to enjoy a walk today – and that your pain is fading.

    All the best to you as you continue to recover!

    • Hiya
      Ah good news then, absolutely the back pain is the worse and that will be the same for both of us.
      I recommend lots of pillows, its nice to have one behind your back one in front of you and however many you like underneath your head. If you have wood flooring a tall dust pan and brush so you don’t have to bend down, maybe a walking stick for balance and some lady panty liners, as you do loose feeling and cannot unfortunately always tell when you need the bathroom, this said we are not talking huge amounts so maybe mini size.
      Good luck and I will be there with you spurring you along as you were me.
      Thank you for yous support and best wishes
      Angie

      ps I walked 10,000 steps yesterday over all day but not bad!

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