It starts in the pit of my stomach; every time I have tinnitus, every time I lose my balance, every time my eye twitches. And when my headache starts to feel a little bit worse, it’s like I can picture the tumors growing. Or even worse, what if there’s a new one??

The feeling intensifies while I’m in the MRI machine; ear plugs inserted, pads on either side of my head, an IV in my arm, and a cage over my face to hold me perfectly still while unnaturally loud sounds bang obnoxiously around me.

It heightens every passing day after the appointment; constantly checking my phone, waiting for the news with curiosity of the images that were formed, and anxiety of the story they will tell.


Those of us with brain tumors live on the ever present edge, hoping, praying and waiting to hear the words “I have good news,” and powerfully fearful of getting a phone call that says otherwise.

Thankfully, this time, all of my specialists were in agreement; first my spinal specialist, then radiology, and finally my ENT; “no growth,” “stable” and “good news!”

Every time we hear the words we are hoping for, relief and gratitude flood my body. I think, “Safe (for now)!”

Although it is a huge success, we know it’s not permanent.

In 3 short months I will repeat the MRI process, hoping and praying for the exact same results.

In the meantime, I’m making the most of the next 3 months, because every victory is worth celebrating, no matter how small, for as long as we possibly can!!

This is my story, and it is not over yet.

8 thoughts on “Scanxiety”

  1. This is so true, even as a parent. Thanks for putting this into words.

    Dee Ann

    Sent from my iPhone



  2. I have had 2 MRIs a year for 32 years. The best tech I ever had played music for me throughout the scan. My choice–80s pop.Hard to be upset/anxious in that scenario.


  3. This is so true….no matter how many of these we do per year, it is anxiety and fear inducing every single time.
    I also have NF2 and am in Co! Small world. I’d love to connect with you and hear more about your story. Hope you can see my email address in the reply.


  4. Find a hospital which will book your neurooncologist appt the same day as your scans. My daughter has been seen at UCLA, Hopkins , and NYU. All of them do this. It is not right that you have to wait in anxiety for days.


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