SMA News Forums Forums Treatments and Research Spinraza (nusinersen) “My Spinraza Journey”

  • “My Spinraza Journey”

    Posted by kevin-schaefer on January 4, 2018 at 11:34 am

    Our newest columnist Ryan Berhar posted an article a few weeks ago describing the ups and downs of his trying to receive Spinraza:

    It’s a great column which articulates many of the issues SMA adults face in starting this treatment process. Like Ryan, other SMA adults have been denied the treatment due to factors like having a spinal fusion.

    I’m curious to hear from you all about your experiences with Spinraza. Have any of you had this kind of difficulty as well? Let’s get this discussion going.

    deann-r replied 6 years, 2 months ago 4 Members · 6 Replies
  • 6 Replies
  • deann-r

    January 7, 2018 at 11:18 am

    I was surprised when I was given the go ahead to start treatment since so many are still fighting for approval.  Started treatments in September 2017.  Because of my spinal fusion they do the injections through the neural foramen with ct guidance. It’s gone incredibly smoothly.  I’m 38 type 2.  You can follow my vlog DeAnn’s Daily Adventures on YouTube.

    • kevin-schaefer

      January 7, 2018 at 6:34 pm

      Thanks for sharing! I’ve actually come across your YouTube series. Would you mind posting a link to it in another post here? It’d be great for other users to see.

      Yes I’ve been fortunate as well. I started receiving injections in November 2017, and it’s gone quite well so far. Mine are being administered via neck injections, due to my spinal fusion. My hope is that more neurologists will be willing to try alternative injection methods for SMA adults who have had fusions. Time will tell I guess.

      Thanks for joining the discussion!

    • art-slott

      February 2, 2018 at 1:42 pm

      Biogen reported that 20% of Spinraza patients are over 17. So with those kind of numbers, if the data is positive enough, it makes it harder on the insurance companies and govt entities to deny coverage. I’m hoping we will hear a lot more about this older population at the annual AAN conference in April.

  • federica-borsi

    January 17, 2018 at 10:16 am

    I’m federica, I’m 22, type3. I’m italian. I would like to know if there is any adult among you who received Spinraza even though he has a fixed spine?
    in Italy, due to bureaucracy and politics, doctors administer Spinraza only to children, but spinraza is also approved for adults. Italian doctors are afraid to do Spinraza to adults so I would like some contact of American neurologists to ask more informations.
    I would like to know from the adults who received Spinraza the side effects and the beneficial effects.
    I apologize for my bad english.
    best regards

    • kevin-schaefer

      January 17, 2018 at 10:26 am

      Hi Federica, yes I do know that in other countries Spinraza hasn’t been as widely administered among both children and adults. I live in North Carolina in the U.S. and started receiving the treatment in November 2017. I’m 24 with SMA Type 2, and I have had a spinal fusion. My doctors were unable to find an opening in my spine to do the standard spinal injection, so instead I’ve been receiving mine through a series of neck injections. I’ve written about this in detail in my SMA News Today column “Embracing My Inner Alien.”

      I do know that even here in the U.S., there are still neurologists who don’t feel comfortable trying alternative methods, so there are still plenty of adults who have been unable to receive the treatment. I do hope that you’re able to receive it eventually. I think it’ll still take some time for doctors to be convinced that methods like the neck injections are effective, but until then the best thing to do is keep researching and talking with your doctors.

      Also if you send me a private message I can give you the name of my neurologist. I go to Duke Hospital in Durham, North Carolina for my treatments.

  • deann-r

    February 12, 2018 at 10:30 am


    I know of several adults who are getting Spinraza in the US and have their spine fused, I am among them.  Sometimes a CT scan will show an opening so the injection can be done normally or with fluoroscopy imaging.  My injection is given through the neural foramen using CT guidance because my fusion did not allow traditional access.  With this method they gain access to the spinal fluid from your side through the natural opening where your nerves branch out into your legs.  It’s worked like a charm for me.  Some have gotten a port surgically placed for easier access.  Others get theirs via cervical injection from an experienced doctor.  Some have also had a procedure called a laminectomy to remove a segment of bone to gain access.  Each method has its benefits and drawbacks.  When Spinraza does become available for adults in your country I would recommend discussing your options with your doctor.  I’m hopeful everyone will have access to this treatment.  The sooner the better, so keep fighting for it!

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