Spinal Cord Tumor Association

Since receiving my diagnosis, I have been desperate for information. Spinal cord tumors are rare, so there are not a lot of people to turn to for first hand information. Fortunately, I found the Facebook page of the Spinal Cord Tumor Association. This is an active group of around 2,000 supportive survivors and caregivers.

While some of the stories that people share scare me to death, I have also found some inspiration and solid advice. Right now that is what I need more than anything else.

 

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6 Comments

  1. Hi I have just come across your blog. I too have a spinal cord tumour. Have you had your operation yet? I am having mine next Wednesday

    • I am still in the processing/planning phase. My doctor wants a biopsy before scheduling surgery. I will have that on November 22, and then we will schedule surgery. Best of luck to you on your journey. If you are not already connected with the SCTA on facebook, I highly recommend it! What kind of spinal cord tumor do you have?

      • Ah good luck to you. I have an intradural tumour , dr thinks it is benign a harmless lump in a dangerous place. Thank you

      • Intradural intermedullary or extramedullary? Mine is intradural extramedullary at T12-L1.

  2. Mine is intradural L1/L2 but for the op they are doing a laminectomy t12 L1 and cutting through spinal cord skin where the tumour is beneath

    • Best of luck! Hope to hear back from you as you recover. As I read your blog, it is interesting to see how different the approach is in the UK and US. I’ve had MRIs of my entire CNS, but haven’t had all of the extensive pre-op you are having. Maybe I am just not as far along in the process. Will be interesting to see as things progress.

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