I think going into the unknown, is one of the scariest things in this life. When you think about it though, everyday we don’t know exactly what’s going to happen. I guess when you have to sign consent papers, it’s a little extra scary though haha! Last Tuesday morning, September 26th, I woke up ready to receive Spinraza. I mean really woke up ready since I was pretty much already awake for an hour and overall, got about 4 hours of sleep. Most of the night just consisted of me laying in my bed, thinking. My mind just goes and goes and goes… Anyway, it was time to get ready. I was so excited, but so damn nervous at the same time as I knew going into this, I was going to be given the treatment through my cervical spine. Throughout the morning, I received so many nice messages. It made me smile and feel better about it all. Getting into the van, I felt so many emotions. Sweaty palms, spinning stomach, mind going a mile a minute thinking, “There’s no turning back now.” One of the first full songs on the radio.. “I see that worried look upon your face. You’ve got your troubles, I’ve got mine.” My Mom, Dad and I just start cracking up. I said, “Is this serious?” The radio even knew how I was feeling. As we were driving, I knew this was it. The day that I, we’ve, been waiting for was here, the day that I thought would never come. This day, I was going to be given a treatment for SMA. This thought going through my mind, felt like a dream.
We arrived at the hospital around 10:30am. First, was a strength test scheduled for 11. The strength test started off with a physical therapist asking me questions relating to what I can and can’t do on my own. Followed by her asking me to lift my arms as high as I could, bend them against her resistance, same with hands and so on. Everyone that touched me that day said, “Your hands are so cold!” My reply every time, “I’m super nervous(nervous giggle).” I’m not sure when the next strength test will be given, but they want documented proof that the drug is working. The physical therapist was super sweet, strength test was done and onto admissions I went. Thinking to myself, “Here we go!”
Admissions didn’t take long and before I knew it, I was prepping for the procedure. After feeling my hands, the nurse offered me a warm blanket. Yes! Time to get comfy before I get a needle halfway into my neck haha. I wish I could just relax, but my anxiety was to an extreme, as my Doctor explained to me what was going to happen. Papers were signed and we were waiting on Spinraza to come out on a gold plate(that’s what we joked about, as it’s locked away, since it’s $125,000). Out it came and everyone was ready. My big brother, Kenny, got there just in time to show love, wish me the best and pretty much tell the Dr to take care of me in that protective brother way. I took a deep breath, closed my eyes and back I went.
They prepared me for the procedure(cleaned my neck, placed towels, numbing needle, etc…) My IR Doctor says, “Ok, here comes the needle.” Ok, now there’s really no turning back. Now, let me just say Dr. Neiman is absolutely incredible at what he does. The needle that he works with is super thin and he slowly pushes the needle deeper and deeper, into the side of my neck, about an inch or so below my ear. He uses a fluoroscopy machine as a guide. As he’s doing this, I kept saying in my head, “Please go through, please go through, I hope you don’t hit a nerve or a blood vessel or my spinal cord, please just let it go through smoothly.” It felt like forever, but really it was only about 5 mins in before I hear Dr. Neiman say, “We’re in. Hand me the medicine. Time it for 2 minutes.” He slowly pushes the drug in, with pauses, over these 2 minutes. As the medicine is going into my cervical spine, I feel my throat get warm, ask them if this is normal. They asked if I was ok. I freeze for a minute and then, get out a yes. Before I knew it, it was over. The Dr says, “Ok, we’re done!” To a Dr that just guided a needle into my neck, into my cervical spine, safely and smoothly, to inject a treatment for SMA, what could I ever say to him for him to know how truly grateful I was? I just let out a, “Thank you so much!!!” I then, asked if it was easy or did he have to maneuver around a lot. Dr. Neiman laughed and said, “You have a very normal neck.” I think everyone could just tell I was excited and didn’t know quite what to say. I came back out and my family couldn’t believe how fast it was. I had to lay down for 2 hours to try to prevent any headaches and to be monitored. My heart did spike up to about 140bpm about an hour afterwards and then, stayed around 100-120bpm the rest of the night. I’m not sure if this is something that has happened with anyone else. For me, it’s not something I would think is unexpected since my heart is known to do this(I was diagnosed with Inappropriate Sinus Tachycardia a few years back). Besides that, no side effects. My neck has been sore which is to be expected. Today, that has calmed down so I’m just hoping it stays that way as my next injection is already on Tuesday, October 10th.
A lot of my friends and family are curious to know how this all works. If all goes as planned and as we hope, the next 2 months are pretty intense. The first three injections are given every two weeks. So, I’m scheduled to have my next two injections on October 10th and October 24th. The fourth injection will be given a month after the third injection. That is scheduled for November 21st. After that, I’ll receive the injection every 4 months, from here on out. Since they are going through my cervical spine, I think it’s only normal to be nervous. I’ll be a little less nervous next time just because I know what to expect and know that I’m in good hands. So, have I been seeing any results yet? Yes! That’s why, at the end of the day, I feel like I have to take this risk. I’ve seen strength gains in my legs and arms. This was just 2 days after my initial dose. I was laying in my bed, as my feet started to tingle. I called my mom into my room and said, “I want to try something.” She bent my legs up at the knee. Now, usually when my legs are like this, if one starts to fall to the side, it just falls. I had control of my left leg and was able to pull it back up from about halfway down. I did 3 reps and got my morning workout in ahaha. As far as my arms, I was able to lift them onto my vanity to do my makeup, onto the table to feed myself. The ability to lift my arms onto these things was an ability that I had lost over the last couple of months that my mom would need to assist me with. As time goes on, I am losing the gained strength, though, as this medication needs to build up in my system, and that is why the first initial doses are given more often. I know firsthand now that this medication is truly a miracle and just to feel what I felt, even if it was just for a few days, makes all of this worth it. A huge thank you to everyone involved. Thank you for reading and please don’t hesitate to ask any questions. Much love always!