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  • The injection was the easy part

    Posted by deann-r on March 17, 2018 at 8:31 am

    As I’m trying to follow doctors’ orders to take it easy after my 5th dose of Spinraza, it just allows me time to reflect on the whirlwind of a day.  Today didn’t start off on a good note.  I found out my new hoyer sling pushes my head forward far enough to block my airway.  Thankfully it was only momentarily, but let me tell you not being able to breathe is SCARY!  I had to push that moment to the back of my mind, it’s Spinraza day after all.  Medi-Van arrives and we head two hours to the appointment.  After getting checked in we use their sling and hoyer to transfer to the bed.  My guess is that their sling is made for a 300 lb person because I’m practically falling out of it.  At least I don’t have to change and am able to wear my own sweats.  Once I’m on the bed they wheel me to the CT room. Hold on, they scheduled me in the X-Ray room?  Now I have to wait while they cancel those orders and schedule me in the CT.  At least I got a warm blanket while I waited.  Once I’m in the CT room they use a transfer board to get me over to the table.  Since they go through the neural foramen I’m on my side.  A guide sticker is placed on my exposed side and I’m scanned to find the sweet spot.  I’m swabbed with orange stuff and numbed with something that sounds like they’re opening a pop can.  The doc gradually inserts the needle and takes a few hazy scans along the way.  When I did feel a pinch I got more lidocaine.  Barely felt a thing. He’s at his target, collects the required amount of spinal fluid and injects the liquid gold.  Okay, not liquid gold, Spinraza, but might as well be gold. Hardly felt a thing and Mom didn’t even get a chapter read in her book.  After that I was required to lie flat for…one hour!  Last time it was 30 minutes, but I guess protocol changed.  Back to my chair with discharge papers, and headed back home.  As with everything when you have a disability getting Spinraza is a process.  A worthwhile process to be able to hit pause on SMA in my opinion.  Just can’t believe the 7″ needle into my spine was the easy part.  What’s your process like?

    kevin-schaefer replied 6 years ago 2 Members · 3 Replies
  • 3 Replies
  • kevin-schaefer

    Member
    March 18, 2018 at 5:37 pm

    Sorry for the whirlwind of a day DeAnn! I totally understand the difficulty with transfers. My second injection took longer because the hospital didn’t have a hoyer lift ready when I showed up, even though I specifically requested one in advance. That put us behind, because I needed one to be transferred to the operating table.

    Fortunately that only happened during that injection, but I’ve had plenty of other hassles like that for other medical visits. I can’t tell you how many times a doctor or nurse has insisted on just picking me up and helping me out of my chair. I’m like “I can’t walk, my bones are fragile, I weigh 130 pounds and I have contractures. You’re not picking me up.”

    How did the actual injection go this time once all that was through? And how have you been feeling since?

  • deann-r

    Member
    March 19, 2018 at 9:32 am

    My dentist and Mom transfer me into the dentist chair and I HATE it.  Gotta do what you gotta do though.  At least I get by with a once a year dentist visit.

    The Spinraza injection was easy peasy. That part only took 10-15 minutes.  They actually tried using a smaller needle to cut down on headaches, but since they have a longer distance to go with the side approach it wouldn’t cooperate.  I’ve never had a headache though, and still haven’t even when he went back to the larger needle.  The one hour wait is also to cut down on headache rates.  Headaches have occurred in 15% of their patients I guess.  Not a high rate in my view, but it’s nice they’re doing what they can to bring those numbers down further, even if it means I have to be uncomfortable for an hour.

    When do you go for your next injection?  Have you had any headaches?

    • kevin-schaefer

      Member
      March 19, 2018 at 1:36 pm

      Fortunately I’ve been able to avoid the headaches, and I’ve heard they’re pretty brutal. My next injection is in early May, so not too far off. I’m glad the procedure for you went well, despite the hassle with transferring and all.

      And yeah for dental appointments, we were able to find an office about 45 minutes from where I live that allows me to stay in my chair and that accepts Medicaid. It wasn’t easy to find back when we were searching for an adult dentist, but I’m glad we did. It’s definitely worth the drive. Ugh, yeah that sounds like a rough transfer. My Mom hasn’t been able to lift me since I was in high school, so if I know I need to be transferred at an appointment I make sure there’s a hoyer lift. Since my Dad works during the week and my caregiver just works with me at home, my Mom is usually with me at appointments.

      I’m glad we can vent about this stuff haha. Even some of my closest friends don’t understand how complex transferring me can be.

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