Wrapping Up 6 Months Post-SDR: Choosing Hope Over Fear (Part 1)
Learning To Walk All Over Again for the 3rd Time: Part One.
I've blogged often here, about my post-SDR "highlight reel" since coming home from St. Louis --old skills regained, new movements experienced and a steady stream of exciting progress made. These 'feel good' moments are easy to write about... and fun to celebrate as they keep my spirits bright on this long rehab journey.
Yet, underneath it all, there have been significant setbacks to manage, too. I've struggled quietly with how to put them into words. For months, I couldn't find the clarity needed to write those blogs to share with you. So...I didn't, because simply... I couldn't.
Instead, I pushed my worries deep, deep down, and just kept showing up to PT 4 days a week, putting in the time. I tried to outwork my roadblocks. I tried to out-walk them on the treadmill, out-stretch them at home and out-exercise them in the gym.
Anyone who has ever tried to ignore their fears will know, though, that eventually we run out of ways to distract ourselves from the realness of the reality we're facing. That's what happened for me, to end August.
Before going any further though, I want to be clear: SDR has given me SO much. Pain relief from indescribably sore muscles and daily migraines. Fluidity and control over my legs that I could never have known to imagine. Greater flexibility and an ease to stretch my body that still surprises me to this day! Relief from stiffness, rigidity and tightness that I'll forever be grateful for. MASSIVE gains in strength and endurance which feels like we've turned the clock back 20 years! And... for a brief window of time...SDR also gave me relief from severe joint pain in my left knee and right foot that had previously pushed me to my breaking point. For 7 glorious weeks after SDR, I thought I was completely pain free from CP. I was overjoyed and relieved about this in ways that defy description.
But as my activity increased in volume and intensity over the last several months, that nasty joint pain in my knee and ankle crept back in, returning just the same. This shouldn't have been a surprise, since 30+ years of spasticity had taken its toll: leaving me with shortened tendons and muscles that have caused my tibia, femur and knee all to internally rotate, in each leg. Even after SDR, these bony deformities and soft tissue contractures continue to put tremendous strain on my joints...so it seemed logical that this collection of damage could be the cause of my recurring pain. Yet, I was still heartbroken to be dealing with it again. Not so much because the pain resurfaced...but rather, because I got to experience how wonderfully freeing it was for that pain to truly be GONE FOR GOOD... until...well... it wasn't. Once it came back, without wanting to be, I was plunged right back into uncertainty and fear of the unknown because left untreated, this joint pain is severe enough to make me want to stop walking. Considering that my mobility is something I have fought for my entire life, and continued to cherish most against all odds, that's saying something.
When that pain returned, I can't describe the sadness I felt. All I knew is that I had worked so hard to get to this point, and so many people had helped give me my shot at SDR. So I felt like a failure. Like I had let everyone down...all because of this joint pain that had come back.
A logical mind knows better, however...
There is a heavy weight of expectation we feel as adult SDR patients to only ever talk about the "wins" from SDR. Especially when we've flipped our lives upside down and fundraised to make the surgery happen. So, a dark cloud of fear and disappointment silently hung over me for much of these last 3 months. The return of that joint pain stole all of my joy and made every other giant win I accomplished feel small... which is crazy considering hard we've worked and how far I've come. But, that's what fear will do when left to run wild with an anxious mind at the helm.
Looking back, I wish I could've just walked out from underneath that cloud. Despite the lengthy list of positives from SDR which are still such blessings that have made this journey 100% worth it and then some such that I'd still do it all over again if I needed to ... I somehow let one incredibly grouchy knee and an exceptionally cranky foot keep me stuck in sadness and anger. Even as new victories kept coming in PT, and even though I recently got my indoor independent walking back which was SO HUGE for me, I couldn't fully bring myself to celebrate these accomplishments. All that spun in my mind, was that damn joint pain and what it would mean for my mobility, my independence and my future. I was scared and didn't know how to process or talk about the heaviness I felt. So I didn't -- except to my closest friends. Even still, those conversations were HARD. Many SDR adults and families experience these same ups and downs -- and struggle to talk about them openly. I really wish that would change, because this journey isn't a linear path to progress and perfection for any of us. But, I digress...
So in early September, I nervously reached out to the team in St. Louis. Since it was always Dr. Park's preference from the start to have me travel down to see him in October for my 6 month check up...I knew that if there was help to be found, it would be with this group who truly understands CP inside and out. So I began opening up to them about the nuances of this joint pain. My therapists wrote detailed letters to Dr. Park explaining our roadblocks. I corresponded extensively with Dr. Dobbs - the gifted orthopedic surgeon who is an integral part of the SDR CP care team - in detail. I also gathered x-rays and medical reports to share with them in hopes that we could shed as much light on this pain as we possibly could, in order to find a solution.
In many ways, SDR is known as "Phase One" of the process in St. Louis. It gets rid of spasticity, allowing muscles a chance to relax and gain true strength for the first time. SDR can't however, address the damage already accrued from spasticity, such as joint deformities and muscle/tendon contractures. This is where "Phase Two" comes in, which involves orthopedic intervention to surgically correct the damage. While most adults are required to wait at least one year after SDR before they can move to phase two, Dr. Park was clear with me from the start that I'd need to move along earlier than that. It was his hope that I could make it to the 6 month mark before hitting too many roadblocks. As it turns out, his predictions were virtually spot on yet again.
Soon, my follow up appointments were booked for the last week in October, and we had a tentative plan in place. Though I felt a bit of relief, I was also consumed with worry as the date of my departure drew near. In travelling down to St. Louis, my options would likely unfold as follows:
Meet with the team and face the possibility of hearing that there isn't anything else to be done about my pain, and return home to live with it, while still trying to make the most of my SDR rehab.
Meet with the team and discuss the option of scheduling PERCS (muscle and tendon lengthening) in the future, to address the contractures in my Achilles, gastrocs, hamstrings and adductors, which could all be a likely source of my pain.
Or, meet with the team and delay PERCS for at least a year, if they felt I hadn't gained sufficient strength, before we could proceed with orthopedic intervention. This would ultimately mean a wasted trip down south, and a return home, still stuck with unresolved pain, while trying to build strength even though we were finding it hard to make gains in rehab.
These three options all had an equal probability of happening, so it was hard to prepare for the impending unknown as I made arrangements for the trip. Eventually though, appointments were scheduled, accommodations were secured and thanks yet again to those who so kindly donated to get me to St. Louis, payment was made to the hospital once more. All the while, we continued on with my rehab.
My last week at the clinic was tough. I tried to keep it together emotionally, but often couldn't. The weight of my situation was really heavy. I didn't feel equipped to make a good decision. I wished that my therapists could tell me what choice to make, if I'd be so fortunate to be given one. The planner, researcher and information-seeker in me wished that I could have certainty in my heart about the options I would face regarding this joint pain and my next best steps to take in order to deal with it. Most of all, I hoped with every ounce of my being that I wouldn't be looking at the end of my ability to walk when coming home from St. Louis, after just 6 months post-SDR.
In my mind after all, I hadn't come this far, to ONLY come this far! So, summoning my courage, and holding on tightly to that tiny glimmer of hope I had, my Aunt and I packed up and hit the road for St. Louis on October 21st.
I had no way of knowing what would transpire in the days ahead. Yet, I knew I would never want to look back later on in my life, wondering what might've been if I hadn't taken this step one more time, to give myself my best chance at preserving the mobility that still means everything to me.
How ever things would turn out, we were on our way to St, Louis once again... hope, tightly in hand.