An Update on My Spinraza Journey

An Update on My Spinraza Journey

Refined By Fire Ryan Berhar

I haven’t updated my Spinraza journey for a while because, well, nothing has happened. But we are getting down to the wire. Something is about to happen — or not happen — by the time this column is published. 

Since there is no access point for the Spinraza (nusinersen) infusion due to my spinal fusion, the only remaining option is a surgery to drill a hole. This procedure is scheduled to take place on Friday. But despite my anticipation of this for the last year and a half, and even though I’ve hung on to the hope of arresting the progress of my disease, I’m currently unsure whether it will happen or not, both for medical and emotional reasons. 

First off, the surgery requires a minimum of eight hours of fasting. For me, anything more than four hours is literally a matter of life and death. A longer fast causes metabolic acidosis, and I have nearly died from that three times. If I have to fast for more than four hours, it’s a deal breaker. As I write this, we are waiting to hear back from the doctor to see if there’s any wiggle room with the fasting.

I’m also hesitant to be operated on by a surgeon who has never even met me. That seems almost irresponsible on my part. I certainly have little reason to distrust him, but I also have not built any level of trust with him, either, which contributes to my overall hesitancy, especially since he’s the only doctor around here who has done this surgery, and he’s only done one.

While there are a plethora of medical reasons, this whole thing is wearing on me emotionally as well. I have probably changed my mind on this a hundred times. After over a year of back and forth, I simply don’t want to think about this anymore. For the first time in years, I’m actually in a good place mentally, spiritually, and by my standards, physically. I’m unsure whether enduring this level of physical trauma will upset the apple cart. There have been numerous times that I’ve said I need to make a final decision and stick to it. I have realized that the only final decision can be “no,” because if I decide “yes,” something will undoubtedly pop up the next day that could change things. 

“No” is such a simple, appealing answer. All I have to do is say it, and I never have to think about any of this ever again. 

At this point, you might be wondering, “What about all the wonderful benefits of Spinraza?” That is what makes this such a difficult decision. Maybe all of these procedures will be an absolute breeze and I’ll gain strength back. It’s also possible it will be a huge nightmare, and the Spinraza won’t help me. The likely outcome is somewhere in the middle. Part three will come soon. Stay tuned. 

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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. Ellyn Kearney says:

    Ryan, I’ve received 5 doses so far and, like you, have a solid fusion with no access points for infusion. Many of us in this predicament have opted for the infusion to be done via a transforamenal approach. It requires no fasting or anesthesia, takes about 30 minutes and isn’t painful. Too many of us are being forced into unnecessary surgeries to receive Spinraza. With this approach, an Interventional Radiologist uses imaging to watch as he passes the needle through the space in the hip bone where the nerve bundle passes through to the leg. Yes, you need a good IR who knows how to avoid the nerve and listens to you during the process. It’s far better than risking surgery for those of us with respiratory and other issues. Blessings on your journey!

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