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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 18 replies, 7 voices, and was last updated 1 year, 10 months ago by Kevin Schaefer.

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    • #13827
      DeAnn R
      Keymaster

      An obstacle for many in accessing Spinraza is how the medication is administered.  This article points out a method that has been successful for several patients.  If you get Spinraza what method do you use?  If you have yet to receive Spinraza would you consider this?

      New Method of Spinraza Delivery May Give More SMA Patients Access to Therapy, Study Reports

    • #13829
      Kevin Schaefer
      Keymaster

      Thanks for sharing DeAnn. I read this article this morning and it sounds interesting.

      I get mine through cervical injections, which works great for me. It was intimidating at first to have a needle go through my neck, but it’s actually a pretty smooth process. I’ve avoided the spinal headaches and any other side effects, and I go in for my sixth injection next Thursday.

    • #13842
      Michael Morale
      Keymaster

      This is a fascinating article. Thank you so much for sharing this. I did a quick Flash Briefing over this article and I’m going to give it to Mike to see if he’s wanting to run this as soon as possible. This could be the answer to a lot of people’s problems, especially those who have had problems with doctors finding an opening within the spinal cord to deliver the Spinraza treatments.

    • #13854
      worthywomanLisa
      Participant

      Fascinating article, and very timely for me. My first loading dose was supposed to be yesterday, but wasn’t. Monday, they will be talking to me other options-I’m assuming this is one of them. (I’m twice as old as the oldest patient in this article, so… Who knows.)

       

       

      • #13855
        Kevin Schaefer
        Keymaster

        Hi Lisa, thanks for sharing. Yes, unfortunately it can be more difficult to administer the drug for adults with SMA, but alternative injection methods such as this one are very promising. I get mine through cervical injections, which has worked great for me and several others I know.

        Please let us know how it goes next week, and if there’s anything we can do to help.

      • #13860
        DeAnn R
        Keymaster

        Lisa,

        Sorry to hear the first attempt didn’t work out, but there are so many options available. I’m 39 and get mine through the neural foramen with CT guidance. I think they call it the Transforaminal approach. It’s worked slick for me. They go in from your side to reach your spinal fluid from the natural opening where your nerves branch out into your legs. No surgery or sedation required.  If you have questions for any of us please don’t hesitate to ask. Good luck with your next appointment!

    • #13856
      Michael Morale
      Keymaster

      Hey Lisa. I just turned 53 on August 8. I know I’m probably just a handful of people my age taking the treatment, but it’s nice to know there are others that are going through it. I wouldn’t worry too much about them finding a location to do your injections. Like I told you on my YouTube channel yesterday, they still have the cervical option available, but hopefully they may be able to find a way to do it through the lumbar puncture. Either way, you will get your treatments I’m sure. Let us know if we can help you in any way and welcome to the SMA forum.

    • #13864
      Mike Huddleston
      Participant

      Interesting article DeAnn; thanks for posting.

      Hey Lisa, sorry it didn’t work out for you yesterday.  I’m 55 and have finished the 4 loading doses and first maintenance is late October.  Let me know if you’d like to talk?  Be glad to help assuage or talk through any concerns you may have.

    • #13867
      worthywomanLisa
      Participant

      I’m really doing okay. I was planning on setting aside more time to grieve, but at the moment… I don’t seem to be needing it. I’m also okay with that.

      • #14189
        Kevin Schaefer
        Keymaster

        Hey Lisa, hope you’re doing well. I just wanted to check in and see if there was any update regarding your treatment process. Are you still looking into alternative methods for an injection? Let us know if there’s any advice or support we can provide.

    • #13868
      Michael Morale
      Keymaster

      Lisa – I know that after waiting as long as you did to start your treatments, you are very disappointed. Trust me, I would be disappointed as well. But, take it from someone who almost didn’t get his first injection, keep your head up and keep a positive outlook because they will find a way to get you your treatments. Many patients who have had problems getting their injection under fluoroscopic guidance have found that CT guidance gives the doctors a different view that they may be able to use. You might want to speak to your doctors about this on Monday when you go in. Either way, like Kevin said earlier, he receives his treatments through a cervical injection and I don’t think he’s had too many issues so far with his treatments.

    • #13869
      Ryan Berhar
      Keymaster

      To be honest, I’m opposed to ports in general. I just do not want to add something else to my body. I’m also against it from an infection standpoint. But that’s just me. Maybe it’s a good option. I have yet to receive Spinraza. We’re planning to do the neural foramen approach.

      • #13882
        Kevin Schaefer
        Keymaster

        I was opposed to the port as well, and I totally understand not wanting to have to go through a full surgery. It certainly works for some, but I’m glad the cervical injections have worked out for me. Keep us updated regarding yours.

    • #13903
      Daria Lavrovska
      Participant

      Hi everyone!

      My 12-yaer-old son (SMA type 2) is in need of surgical operation (because of scoliosis).

      As he gets Spinraza, a surgeon advised 2 approaches: either he lefts a “window” in a metal construction, or  he implants additionally this SIC system in order to deliver the drug. Nobody told us about an option with injections in the neck.

      Which drawbacks\side effects do injections in the neck have? Has anyone faced any?

      • #13906
        DeAnn R
        Keymaster

        Daria, as with any medical procedure the cervical injections have their own risks.  It is a delicate area, so the doctor would need to be experienced with this type of injection.  Hopefully Kevin can chime in with risks that were discussed with him.  I know of a few people who get theirs that way.

        Would the doctor consider leaving an opening and implanting the SIC?  That way there would be a backup if one or the other didn’t work.  Just a thought.

      • #13909
        Kevin Schaefer
        Keymaster

        Hi Daria, I’m 24 and receive my injections cervically. I also have type II. I’ve been fortunate not to experience any side effects, but neurologists are required to tell you about potential effects like spinal headaches and blood clots before the procedure. But again, I haven’t dealt with any, and I’m a big proponent of this method.

        My advice would be to consult with a radiologist to see if they’re comfortable with this method, and so they can determine if your son is a good candidate for it. They won’t do it unless they find a solid opening to do the injection.

    • #13913
      Daria Lavrovska
      Participant

      @Kevin, thanks for clarifications.

      This week we have the 6th injection and I’m going to discuss this option with our pediatrician. Just to know, if it could be a case for us in the future.

      • #13915
        Kevin Schaefer
        Keymaster

        Absolutely. Happy to help. Hope the 6th one goes well.

      • #14190
        Kevin Schaefer
        Keymaster

        Hey Daria, hope you’re doing well. Just wanted to see how your son’s 6th injection went. I had mine right around the same time, and it went well.

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