PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 2

“I’m so sorry, Alyssa,” my surgeon said for the umpteenth time. “I’m so sorry that was more difficult than the last time.”

Although my first procedure went incredibly well, that didn’t guarantee the second time around would be the same. Unfortunately, I learned this the hard way, and that there were definitely some pros and cons to a lumbar puncture procedure when you have a ridiculously curved and twisted spine like mine.

pro and conBecause of all the curves and twists and turns and bends, accessing my spinal canal posed a bit of a challenge, even if I had a surgeon who¬†specialized in scoliosis and had already done this procedure once before on me. The fact of the matter was that, in order to have had the procedure flow as smoothly as possible, I needed to be positioned on the operating table in just the right spot– including how much I needed to roll onto my side, where my legs should have rested, how twisted my hips should have been, where my arms should have gone, where on the table should I have been so that the fluoroscopy could take the right images, etc. Positioning meant EVERYTHING, and it was an art that we hadn’t (or still haven’t) quite mastered yet.

Unlike the first procedure, I experienced some pain and emotional stress. (Although I felt that the pain wasn’t unbearable, I have to note that I’ve always had a high tolerance for pain. I’d like to thank living with chronic back pain for that one!) The combination of the pain, pressure, stress, and dizziness I was feeling was enough to overwhelm me in an emotional sense. Physically, I was doing well, but because the surgeon was having a difficult time finding my spinal canal, I was on the verge of falling apart in fear that this procedure would be unsuccessful. In order to divert my thoughts, I closed my eyes and brought myself back to a memory in late April…

“Is there anything at all, Doctor, that could help Alyssa? Even if it’s just a little something to make her stronger, so that she can fight off an infection such as this at home and not in the hospital.”

My father spoke these words to my critical care specialist as I was laying next to him in a hospital bed in the ICU. I was incredibly weak. I had just gotten over a respiratory infection but was fighting a new battle. I was tired, going on ten days of being unable to eat, and was quickly losing my faith. Why ask this when there’s nothing out there for me?

“Well, I can’t be sure and I don’t want to get your hopes up, but we may have something for Alyssa in the fall,” my doctor briefly said before excusing himself to take a call.

I shot a look at my parents and told them not to tell anyone about this information. Despite the greatest intentions and expectations, the doctors had for the SMA community, this was merely hope for the future and nothing more.

I couldn’t have been more wrong.

brother and sister
En route to Boston Children’s Hospital

I snapped back to reality when my surgeon regretfully informed me that he would have to re-enter the spine from another lumbar level. About an hour had passed, and because the surgeon wasn’t successful in navigating the needle into my spinal canal, he’d have to start the procedure over. I continued to hold tight to my brother’s hand as he intently watched the process of a lumbar puncture and kept his sister feeling safe and calm. I took deep breaths and braced myself for more pain, more pressure and more stress when just five minutes later, I heard my doctor speak those two beautiful words.

“We’re in!”*

Painless and with such ease, he found a way into my canal to administer the drug. I did my best to fight back the tears. It wasn’t because it hurt or I was stressed, but because I was blessed to have an incredibly talented surgeon who didn’t give up on me and my, as he affectionately calls it, “non-vanilla” spine. I took another deep breath, but this time it was a sigh of relief.

Although the surgeon apologized profusely, I assured him it wasn’t his fault. My non-vanilla spine has put me through much worse, and now we could take this experience as a lesson learned for a more successful approach the next time. He shook his head with a slight nod and apologized again.

Following the lumbar puncture, he sat with me in recovery for almost an hour as we swapped stories about our travels and how his wife and I share a love for art. That was the moment I realized he’s more than just an extraordinary surgeon who specializes in “non-vanilla” spines. He’s an extraordinary surgeon who deeply cares about his patients and will do whatever it takes to give them the best care possible- even if that includes telling a joke in the operating room to make them feel better.

With two procedures in the books and more procedures to go, I looked at him and said, “Doctor, you and I are going to become the best of friends in no time.”

 

*Although I haven’t felt any difference from receiving Nusinersen, my doctors said if it were to be effective in my body, it would take a couple of months.


*Disclaimer: While my goal is to remain as open and honest with you on this new journey, the opinions expressed here represent my own and not the SMA community as a whole. Should you seek medical advice regarding Spinraza, please consult with a medical professional. Thank you for following along!

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