A SPINRAZA UPDATE PT. 2

A SPINRAZA UPDATE PT. 2

I have a tendency to overanalyze every little aspect of my life, and as a result, I can sometimes second-guess myself into a fear frenzy. It’s a nasty habit, one I’m not particularly proud of and have been working through for quite some time. I don’t know when this came about or how I manage to create unnecessary chaos in my life, but it’s there. I recognize it. I work through it. But, in my moments of weakness, I let it consume me.

The days leading up to my fifth Spinraza injection were a little nerve-wracking. My vertigo wasn’t subsiding, I still didn’t know what was causing it*, and I managed to get violently ill one night due to stress. At the same time, though, I technically wasn’t sick. I was still going about my daily routine, and I didn’t feel under the weather. I was just having sporadic bouts of lightheadedness at sporadic times. I mastered the triggers and knew how these feelings would run its course, but in those moments, I panicked. With good reason, of course.

So, I tried searching for answers, an obvious sign that would involve flashing lights and flaggers dressed in black and white stripes showing me which direction to take. Should I postpone again? Or should I go?

Eventually, I stopped searching. And, instead, I listened to God, and I listened to my body tell me I’m going to be okay. So, I consulted with my doctor, and we decided to go forth with the procedure the following Monday.

“You don’t think the lumbar puncture will affect whatever is going on with me today, right?” I nervously asked my surgeon while lying in a pre-op stretcher several days later. Deep down, I knew everything would turn out fine, but my fear needed to hear that validation.

“Well, it’s either going to make you better, worse, or you’ll stay the same,” he joked as he gave the most ambiguous answer a doctor could give a patient as to not misinform them. However, knowing that he wouldn’t proceed with the procedure if it seemed risky, his ambiguity somehow comforted me. And, as we were heading to the operating room, he assured me a lumbar puncture shouldn’t affect my other issues.

After about an hour of prep and precise positioning, my surgeon leaned over and said, “anything we can do comfort-wise before we start?” I took a deep breath to release the tension in my body.

“A vodka soda would be great,” I sassily replied as humor is often the path I take when I’m feeling anxious.

Moments later, I felt the needle sting my back, and before I knew it, the procedure was successfully over. The anxiousness I carried with me, the doubt that lingered in my mind in the days prior- everything was over. Everything was okay. Everything was just how it was supposed to be for the first time in a long time. And, as I was wheeled off into the post-op room for my 1-hour recovery, my surgeon advised I hold off on the vodka sodas for a while. I chuckled and reminded him how grateful I am to be the best hands.

I left the hospital that afternoon with a great sense of relief, and that’s when I finally realized: if you allow yourself to listen closely, you will hear your instinct giving you a gentle reminder that you are so much stronger than what you give yourself credit for. Sometimes, it’s okay to let your fear talk the talk, but it’s more important to remember to acknowledge and honor the strength hidden in the depths of your soul. Because, like fear, your strength is always going to be there- no matter how far you’ve been kicked down, no matter how defeated you feel, and no matter how many times you let fear consume you. It’s all up to you to decide which path to follow.

Five treatments down, friends- let’s see what happens next. Want updates? Subscribe below!

*My symptoms are related to a minor concussion, severe seasonal allergies, and/or a vitamin deficiency. They have been lingering on and off for the last six weeks. How’s your spring going? 😉

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*Disclaimer: While my goal is to remain as open and honest with you on this new journey, the opinions expressed here represent my own and not the SMA community as a whole. Should you seek medical advice regarding Spinraza, please consult with a medical professional. Thank you for following along!

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This Post Has 15 Comments

  1. You are so brave and smart, Alyssa. We all could take lessons from your wise perceptions about life. Sending you love and healing

  2. 👍❤️…. lots of prayers coming your way, Alyssa!
    Hugs, Joyce

  3. Yay, Alyssa! I’m so glad to hear that Spinraza #5 went well.

  4. I have really enjoyed reading your journey! As an SMA community friend and speech therapist, I am always eager to hear how things are going. Thank so much for so openly sharing your story!

    1. I’m so glad to hear this. Thank you for all you do!

  5. You have clearly chosen the path of Strength Alyssa! Thank you yet again for your inspiration and for being a role model for Abbey and Max.

    1. Love you all!

  6. Hope you are feeling better!!

  7. Hi honey, hope this finds you less dizzy, keep up the B3, once your levels get higher you will see a difference, I have been there, where they couldn’t find why I was so dizzy, and once I got enough B3 in me, Wow what a difference! Know I love you and am here to help! I wish I had your brave ways! I know bigger and better things are coming your way! MFA

    1. Thanks for the pep talk, MFA. 💕

  8. I hope you recover from your concussion soon. I’m glad you were able to get the Spinraza treatment anyway! I think it’s doing wonders for you. Even subtle wonders are amazing with SMA. *hugs* You go girl!

  9. Thanks for sharing. I just got approved and start treatments soon. A bit scared of the unknown and don’t want to get too excited. Your experience gives me strength. Have you had any issues with post treatment? Is the treatment painful? Any suggestions for post treatment?

  10. Hello Allyssa, excuse me for my english, i am spanish, i hope that you are good, you are very strong and a exemplo for the others people, i have ame too, are you best whith spinraza? Good bye and thanks

  11. Hi Alyssa! I’m Josy from Hong Kong, a strong Type 1 too and I’m now 23!
    I’m very happy to read your journey of Spinraza since we are both Type 1 adults!

    I know you can talk louder and smoother after treatment. May I know if you notice any other improvements apart from better lung function?

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