Quadzilla vs The Syrinx Round 2: Surgically untethering the cord
"Another surgery? Oh, hell no." — Tony Schmiesing, on numerous occasions.
In my defense, I always included the caveat; "that's how I feel today. Tomorrow, who knows?" And up until about three months ago that "tomorrow" never came.
For close to seven years I felt very strongly about not going under the knife again.
And while I think the video here pretty much sums up my reasoning and addresses why I changed my mind, I do want to revisit something I dropped rather matter-of-factly and may have come off to some as sounding a bit macabre; the whole suffocating to death thing.
The thing is, I don't know the future. Duh. 1,000,001 things could happen before the syrinx reached a point where suffocation became my fate. But just the thought of it (if I ran things out to their uninterrupted conclusion) didn't sit with me (understatement of the year), and consequently this became the catalyst for my decision. I like breathing.
For all the reasons I didn't want to have surgery again — I've had an amazing life, I don't want to miss another ski season, I'm healthy (you know, aside from the unpleasant symptoms of syringomyelia), recovery is a bitch, yada yada yada, blah blah blah — those same reasons (the first three anyway) apply to deciding to have it.
It’s time to roll the dice again. Plain and simple. Full stop.
Before I sign off, however, I want to reiterate what I said in the video and perhaps elsewhere in this blog; I never had any intention of writing about this part of my life as I tend to be hypersensitive about being identified with any circumstance. But because I couldn't find anything out there anecdotally when I was diagnosed and did my research, I felt it was probably something I should do (that, and I think any light that's shined on this rare condition is probably a good thing).
*I'm glad I did.
Over the years, I've received numerous emails and comments from folks around the world who've reached out, told me their story, and thanked me for sharing mine because it helped them in their situation; with decisions about surgeries, what they might expect as things progressed, relate-ability, etc.
Many of the stories broke my heart, but all of them were filled with hope. These are folks of all ages, at different stages of their lives, making the best of a situation they never imagined or asked for, but navigating it all as best they can. So in no small way they've become true inspirations to me.For all of you, I am grateful. Mahalo. Keep on keeping on and big love!
New Mobility article Untethering the Invisible Knot
*The following "timeline" is intended for those who are dealing with syringomyelia or know somebody who is. It's simply me attempting to be more specific for the sake of possible useful anecdotal information.
2009 First shunt surgery at UCLA.
2010 MRI reveals the shunt is not draining the syrinx. Doctors tell me the only way to find out why is to open me up again. I decline.
2013 MRI reveals the syrinx is continuing to grow. I continue to lose both sensation and mobility in all my extremities. The left side seems most affected. My left deltoid in particular has lost a dramatic amount of function. The pain in my neck and shoulders continues to escalate as well.
2013/14 I notice a pronounced change in the way my body sends me messages. My dysreflexia has changed to the point where I can no longer tell how full my bladder is. This is especially disconcerting since I live independently and catheterize intermittently. The implications of this could be critical. I take it seriously. Dysreflexia for a quadriplegic is no joke.
2016 The syrinx is larger still and all of the above symptoms are more pronounced. Two surgeries are scheduled for the end of September at Craig/Swedish Hospital in Colorado. The hope is the first surgery — a different technique of shunting — will drain the syrinx and arrest my symptoms. If this doesn't work, a second surgery is scheduled for the following week to untether my spinal cord from the scar tissue at my level of injury. The theory here is that my spinal cord floating freely within my spinal cavity will allow the cerebrospinal fluid to flow normally. Of course, this second surgery is more involved and risky as it's at my level of injury. Recovery from this surgery would be quite protracted as well.
2016.2 Presurgery haircut. Ready to rumble.
Click here for previous blog posts about my adventures with syringomyelia
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