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 whoΒ 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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Chronicling my journey while teaching the world that I have SMA, but it will NEVER have me. Life's what you make it, dare to make it a remarkable one✨

29 thoughts on “PLEASANTLY ANTICIPATING THE HANDS OF FATE: MY SPINRAZA JOURNEY – PT. 2

  1. You, my dear Alyssa, give me hope for the world. Hope that people will one day be as generous and giving as you, as positive as you are, as unassuming as you are…I don’t think you realize the positive impact you have on so many people. You have brightened my day once again. Hugs…..Miss Claire.

  2. Alyssa you are so brave. I pray that the pain and anguish you are going through will make the difference in the lives of others with SMA and that someday that will read about their hero Alyssa Silva who underwent extreme circumstances to give them a fighting chance.

  3. If there was a dictionary with pictures by the words : brave, incredible, remarkable, loveable , kind , beautiful and inspirational there would be a picture of you my sweet dear Alyssa. I think you are the strongest person that I’m fortunate to know . You are blazing new trails into the future , stay strong my hero .
    Your True North .

  4. I’m so glad I got to meet you at Camp while you and my Amanda were getting new service dogs.
    I have learned in the year plus what a strong and determined young lady you are!
    Prayers are being said to get you through this next stage of your life.

  5. I am so impressed with your courage and bravery as you cope with such a physically debillitating condition and so impressed with your intellect and wit that allows you to educate us as you share your journey. Wishing you success with this treatment and Happy New Year.
    Donna Barboza

  6. You are my Hero, for never giving up and being so brave! I love how you, can let this doctor know that you will be back for more and you will become friends! Your optimism is incredible! Maybe that’s what makes me love you so much! The glass is always half full! I feel in my heart that this will be our miracle! Love you, MFA and MFT

  7. Dear Alyssa,
    My name is Brianna Salo and I also have Type I SMA. I am 17. I am extremely weak but I can still breath on my own without a trach yet. I have been researching this experimental drug that just came out and some of the side effects scare me, as I have kidney problems. I admire your bravery in trying this drug when we have no idea if it will help adults such as ourselves. Thank you for sharing your experience with this, as this will probably help me make this personal decision of whether or not to try Nusinersen!

    1. Hi Brianna! The side effects are a little intimidating for sure, but I’m hoping the benefits will outweigh any potential risks. Our doctors (and the FDA) wouldn’t proceed in moving forward with this drug if they felt as though it was unsafe. πŸ™‚ Thank you for being so sweet- keep fighting, girl. ❀️

  8. Good job, young warrior! I’m so very happy that you have a marvelous doctor who’s IN the battle right alongside of you! What an awesome TEAM! πŸ™‚

  9. We’re so happy to hear about this next step, Alyssa! Thank you so much for sharing your story in your own words. You are helping so many people. Many blessings to you in 2017.

  10. Hi Allyssa, Just watched your story on T. V. with my wife and really admire and respect your attitude towards life. You are and encouragement to me and your Spirit is wonderful. I hope and pray for you as you continue to journey through this life. I am a fellow traveler through this journey of life and have seen a great deal of pain and misfortune. Some I was born into and later I created a great deal of my own making. God has been good to me and I am grateful for the fact that I have been reconciled to Him through His Son Jesus. God Bless you and your loved ones’.
    Resting in Christ’s Redemption,
    Paul Capozzoli, Sr.

  11. Alyssa,
    Thank you so much for sharing your experience! I have SMA1, as well, and am 52 years old. Every birthday is a gift because it means I have continued to beat this disease. On January 10, I’ve got an appointment with my neurologist to begin the process of getting Spinraza. There are too many emotions to name but at least now there is one thing we have that is new – hope. Look forward to learning more about your journey and sharing mine.
    Blessings, Ellyn

  12. Hi there, I really enjoy reading your posts and am hoping you *might* have access to some information on this new drug that I seem unable to find through my lackluster and poorly-informed neuromuscular specialist. I am 39 and was diagnosed with Type 2 SMA when I was roughly 18 months old. I’ve used an electric wheelchair since shortly before I turned 6 and have lived (most of the time) alone and on my own since becoming an emancipated minor at age 15.

    So without boring you with a complete and unabridged autobiography, I’ll move onto my query. With no family and no current significant other, each year with the decrease in strength I am reminded that inevitably, I may end up living in a home/institution of some sort. Eventually, the cost of caregivers, hours needed each day, and time that I can spend alone/independently will create a set of circumstances and situation that makes bachelorhood and autonomous living an impossibility. I’m stating all this just as a way to express the immense impact and ramifications that the drug could potentially have on my life.

    My question is this: I know the drug has been approved by the FDA in Trumpmerica (lol, sorry) but I can find no information regarding if or when we Trudeau-adians up north might have access to the drug. I live in a major city of more than a million people so if it does become available I will be able to acquire the surgeon and facilities needed for the injections. I was just hoping that your neurologist or someone you know could give me a heads up and spark of hope that it will arrive here in Canada at some point, eh. So if you have any information I thank you in advance.

    In the meantime and regardless of your answer, I wish you the best of both luck and scientific progression. I appreciate your courage and willingness to partake in this monumental advancement for people with SMA and admire your ability and excellent grammar while chronicling your journey. Thank you again, and best wishes for you in the new year. Stay strong and, hopefully, with time, get the physical strength to match your spirit and mentality. Take care.

    1. Hey Jeremy, I wish I had an answer to your question, but unfortunately I do not. 😦 However, I have heard it will be cheaper in Canada! Best wishes to you in 2017. Thank you for the support and words of encouragement- except for that Trump remark…not cool. πŸ˜‰

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