SMA News Forums Forums Treatments and Research Spinraza (nusinersen) Spinraza Dose #8, Stressful and Successful

  • Spinraza Dose #8, Stressful and Successful

    Posted by deann-r on March 25, 2019 at 11:33 am

    As I’ve said before the actual injection for me is the easiest part of “Spinraza Day.”  That held true for dose #8 despite the Interventional Radiologist needing to shift the trajectory of the needle a couple times.  Honestly I thought I might be a little sore the next day because of it, but like the previous injections I could barely tell a 7″ needle penetrated my spine.

    Regardless of my efforts as a type A personality to make the process as easy as possible, it still had it’s stressful moments.  Thankfully it all worked out.  I have to say the Cure SMA care package phone holder came in handy so I could use the phone’s navigation to direct my white knuckled Mom to our destination without worrying about dropping it.  We didn’t even miss any exits.  I’m not sure why they wanted a 10:00 check in for an 11:00 appointment.  Arriving just before 10:30, we got a late start,  we still waited until after 11 to get called back.  After doing the routine vitals, yes my bp was a little elevated, they actually said we need to do labs!  With a confused look on my face I explained that everything should be complete.  For goodness sake I’ve had my blood drawn 3 times within the last week to get the required labs.  After double checking they indeed had them, however they had neglected to do the pregnancy test.  Apparently it’s being required since the procedure is done in radiology.  I was able to refuse that to avoid a fourth blood draw.  I get the reasoning, but if I was pregnant let’s just say it’d be miraculous conception.  Even though the injection took a little bit longer, it still only took about 20-30 minutes.  Having to lay in recovery for an hour is difficult for me, but whatever.

    After that I did my physical therapy assessment and PFT.  I learned this may not be required every 4 months anymore, yay!  My hands were pretty cold, so even though I could tear through two layers of paper unlike last time, I couldn’t get the light on or open the Tupperware container as before.  So, kind of a wash.  My PFT was about the same to slightly better.  My phone battery lasted long enough to get us on the right road headed home.  After a 9 hour day I was glad to be home.

    kevin-schaefer replied 5 years, 3 months ago 2 Members · 1 Reply
  • 1 Reply
  • kevin-schaefer

    Member
    March 25, 2019 at 12:25 pm

    Glad it went well! I think my next one is in May.

    Geez, that’s a full day. I only do the injection, and then my evaluations and PFTs are done on separate days. I see my pulmonologist every four months, and then I do my evaluations at the MD clinic. I’d have a hard time doing anything other than an injection on the same day.

Log in to reply.