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  • This topic has 6 replies, 3 voices, and was last updated 1 year, 9 months ago by Kevin Schaefer.

    • Author
      Posts
      • #11803
        Kevin Schaefer
        Keymaster

        Hey everyone, so I was just talking with a forum user over email about my Spinraza experiences, and specifically how I’ve dealt with cervical injections. I know many doctors are opposed to any method other than spinal injections, but I’ve had success in this area.

        This was my response to this person’s questions about the procedure, side effects, etc. Feel free to share your own experiences or ask questions.

        “As far as the risks, the only kind of horror stories I’ve heard are from people who underwent the surgery and experienced complications. So, nothing to do with the actual drug, but that the operation hasn’t always gone smooth for everyone. I was very anxious about this as well going in, given that I’ve had spinal fusion and wasn’t sure what they would do.

        With the cervical injections however, they’ve gone extremely well. At first I wasn’t exactly keen on the idea of getting a shot through my neck, but once they did it I experienced hardly any pain. It was more of an awkward, tingling sensation as the drug entered my system. And then it was over before I knew it.
        Some doctors are fully opposed to anything other than a spinal injection, but I’ve found that the cervical method works great for me. I didn’t experience any side effects, which I’m quite glad of because I had heard about the nightmarish headache others have dealt with. It really does vary on a person-to-person basis, so I can’t promise anything. But speaking from my own experience, the cervical injections have been successful and devoid of any side effects.
        As far as the results, I haven’t seen anything major, but I’ve had some boosts in energy and my speech has improved a bit. Now that I’m not constantly running out of breath, my speech is less slurred. I didn’t really go in with any expectations, and I’d be perfectly content with the progression of my SMA stopping. But I’ll take any other results.”
      • #11818
        DeAnn R
        Keymaster

        Thanks for sharing Kevin.  I’ve been seeing a lot of questions regarding this way of getting injections.  Do you have a port where they do the injections, or is it a direct injection?  Do they do the injection in fluoroscopy?  I get mine done via the neural foramen approach with CT guidance.  Some docs are against this method as well, so it’s nice to let everyone know options to present to their medical teams.

        • #11819
          Kevin Schaefer
          Keymaster

          Absolutely. And I understand that many medical professionals have reservations toward it and do the methods that they’re comfortable with. Still, the cervical injections work for a lot of people, including myself.

          Mine are direct injections, no port or anything. And I think it’s fluoroscopy, but I’m not positive. I’m kind of dumb when it comes to the terminology lol, but they do the injections in a CT room. They scan me first to get a look inside and then stick the needle in. I usually just daydream while they’re doing all that and it’s over in a few minutes.

      • #11894
        David Z
        Participant

        Thanks for the info! What position do you have to be in for the cervical injection? On your side? Do you have to hold your neck a certain way?

        • #11904
          Kevin Schaefer
          Keymaster

          They put me on my side and strap me in. It sounds uncomfortable, but they put plenty of pillows and pads to support me. As far as how my neck is positioned, I mainly just have to stay still during the procedure. It’s not a terribly uncomfortable position. The hard part is transferring me to the table and getting me on my side, but all the doctors and assistants have been good about listening to me.

          • #11931
            David Z
            Participant

            Ha, I know what you mean about the importance of doctors/nurses/etc listening. It’s so easy for things to get out of control at the hospital. “No, don’t move my leg that way!”

          • #11936
            Kevin Schaefer
            Keymaster

            Right! For these injections they’ve been good about listening to me, but I’ve had plenty of times where the opposite is true. Some people just don’t understand how delicate our bodies are. Sometimes you really have to advocate for yourself.

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