My First Spinraza Injection Was Like Something Out of a Comic Book

My First Spinraza Injection Was Like Something Out of a Comic Book

Kevin Embracing my inner alien
A few days ago, I found myself strapped to an operating table while a radiologist injected a needle into the side of my neck. From there, I felt a tingling sensation in my body as a specialized spinal fluid flowed throughout my insides. All the while a series of lights and sounds emanated from within the CT (computed tomography) scan room.

All in all, my first Spinraza injection was like something out of a comic book. The whole scene felt just like when Steve Rogers had the super-soldier serum injected into his spine and became Captain America; or when Bruce Banner was infused with gamma radiation and transformed into the Hulk. Technically, I could also compare it to when Wolverine was recruited by the Weapon X program and received his adamantium skeleton, but I’d say that my spinal fusion surgery was more akin to Wolverine’s origin. In that instance, I literally had metallic rods fused into my spine.

I could compare my medical history to superhero origins all day, but  suffice it to say that my Spinraza injections are off to a great start. By the time this column goes online, I’ll be going in for my second loading dose, but I wanted to document the experience of the first one while it’s still fresh.

Though I still had some reservations going in about the whole treatment process, I was nonetheless ready to give it a shot. When I first went in, the doctors took me to an X-ray room and wanted to see if they could do the injection there. Both my parents were present, and my dad transferred me from my chair to the table. This was by far the most uncomfortable part of it all, as it’s difficult for me to lay flat on a hard surface, even with several pillows and pads to support me.

I remained here for a little while as the doctors examined me and talked with each other, but ultimately they decided a CT scan would be a better option for this procedure. I said that was fine, and they then transferred me to a gurney and rolled me into the CT scan room so they could do the spinal injection in there. After I was once more transferred to the operating table there and strapped in, the radiologist came in to say that she had yet another plan in mind.

Do you see now why I was a bit skeptical about all of this in the months leading up to the first injection?

Nevertheless, the radiologist explained to me that because the surgeon who performed my spinal fusion operation in 2005 did such a good job inserting the rods into my back (props Doc), she saw no point in even attempting to do a spinal injection. Instead, she and her colleagues wanted to administer my medication via a neck injection.

Now, my mom and I had done plenty of research in advance, and neither of us were terribly surprised that my doctors wanted to try an alternative method. In fact, I was quite relieved that they didn’t want to waste time poking and prodding my back to try to find an opening.

My dad, however, nearly passed out when he heard the words “neck injection.” I can’t say I wasn’t a little nervous as well, but the doctor assured me that she had a lot of experience with neck injections and that she wouldn’t proceed with mine if she didn’t think it was safe. We talked, and I gave her permission to stick that needle right below my oversized head.

As the lights on the CT scan machine started blinking and the radiologist put some numbing cream on the back of my neck, I closed my eyes and tried to stay as still as possible. By the time the needle went in and the doctors started to remove some of my spinal fluid (to make room for the Spinraza), it felt a little weird — like a bunch of stuff was moving around in my insides. Still, the only pain I felt was a slight burning sensation when the medication went in, but it was pretty brief.

Before I knew it, the procedure was over. I had successfully made it through my first loading dose.

I’m only a few days out at the time of writing this and I’ll have more details about the effects in my next column, but so far I feel confident moving forward. I still made it to NC Comicon the next day, and I haven’t let this process slow me down. Hopefully every injection will go this smoothly, as there are still many more to go.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

One comment

  1. Ayça Şahin says:

    Hello Kevin,

    I’d like to ask some questions to you. My brother and I are also SMA patients, we have type 3 SMA. My brother has scoliosis and we’re concerned about receiving Spinraza. You give us hope. Please text me back via email or you can simply find me from Facebook.

    Sincerely,
    Ayça

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