Coming to Terms with My Spinraza Setbacks

Coming to Terms with My Spinraza Setbacks

Refined By Fire Ryan Berhar

My Spinraza journey has been a roller coaster ride so far, filled with joyous highs and gut-wrenching lows. I am a person who likes to make a decision and stand (or sit) by it. But with Spinraza (nusinersen), I have found it impossible to make an ultimate decision. There is simply too much uncertainty. This entire process has taught me a lesson: Do not make emotional decisions.

The best way I can describe my journey is through the “one step forward, two steps back” cliche. I get promising news one day, only to have those hopes dashed the next. I have a seemingly never-ending series of hoops to jump through. Three months ago, I had yet another setback, and this one hit harder than all the rest.

Due to my fusion, impenetrable armor surrounds my spine, which makes administering Spinraza in the conventional way impossible. The doctors in my area are averse to any unconventional methods, so I was left with one option: a surgery to drill a hole as an access point. It is important to mention that I was on the fence about whether or not I should go through with the procedure. I was ALREADY exhausted by the journey, and I wasn’t exactly champing at the bit to wake up at 5 a.m. and get a hole drilled in my spine. But with no other options, I decided to go through with it.

I won’t go into great detail, but the surgery fell through. I can’t fast, so the plan was to admit me to the hospital a day early and give me intravenous nutrition to keep my stomach empty while still receiving food. It was a good plan with poor execution. I woke up the morning of the surgery and realized that I hadn’t voided, nor did I need to. Red flag. From experience, I know that being on an IV turns me into Niagara Falls. I looked at the bag and saw that it was still nearly full. This is literally a matter of life and death for me because the last two times I missed my nightly tube feeds, I almost died from metabolic acidosis. Not wanting to increase my risk of another such episode, I decided to resume my tube feeds immediately, therefore foregoing the surgery.

You know the saying “the straw that broke the camel’s back”? Well in this situation, while one more straw would have sufficed, someone threw a log on instead. It was crushing. I put myself through something that I wasn’t even sure I should have done in the first place, only to plunge into another emotional whirlpool.

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After that, with my emotions taking control, I was 100 percent closed off to pursuing Spinraza any further. I thought, “If this isn’t meant to be, I don’t know what is.” A couple of months later I learned that there are doctors in my city who could potentially administer the drug through the neural foramen, bypassing my spinal fusion, but I still didn’t want any part of it.

It wasn’t until I had about three months to reflect on things that I realized I was breaking one of my life rules: no emotional decisions. I have finally concluded that if there are doctors in my backyard who can give me the treatment with no surgery required, it would be foolish to not at least look into it. I was acting out of frustration, which is never a good idea.

That said, I am not willing to put myself through any more emotional trauma. If I could go back to February 2017, before my ordeal, knowing what I know now — the level of physical and emotional agony I would go through with only a chance to still get Spinraza a year and a half later — I wouldn’t do it. However, if another treatment door opens and the path is relatively smooth, I will absolutely go through with it. But I’m not willing to battle any other significant barriers.

Making pragmatic decisions when it comes to something as profound as Spinraza is challenging. But I want to encourage anyone in my position to put your emotions aside and make the most sensible decision for you. For the first time, I feel at peace with my Spinraza journey.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

One comment

  1. EFSBes says:

    While I do understand that the evolution of the disease being what it is, trying to get asap Spinraza is crucial, but this treatment isn’t the be-all and end-all. Multiple others, albeit still under clinical trials, exist. RG7916 from Roche has still 2 years of trials before completion but the preliminary results it shows are incredible, and it is an orally taken drug (syrup). Several clinical centers might still be recruiting for SUNFISH (the name of the clinical trial), it would be worth checking with a local hospital.

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