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An Update on My Spinraza Journey
In his latest column, SMA News Today writer, Ryan Berhar, shares an update on his journey with Spinraza:
“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 dealbreaker. As I write this, we are waiting to hear back from the doctor to see if there’s any wiggle room with the fasting.“
Read more here: “An Update on My Spinraza Journey“
Have a question about this treatment? Leave it below.
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1 Reply
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Have they considered the neural foramen approach? That’s how mine is being done. No surgery or fasting required. Mine is done with CT guidance. When there’s no access point due to fusion they can go through the natural openings where your nerves branch out into your legs. It’s more of a side approach. For me the procedure to get the injection takes about 20 minutes, just lidocaine to numb me up.
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