Learning To Walk All Over Again for the 3rd Time: Part Two
At 8:30 am, my Aunt Mary and I started our 14 hour drive down to St. Louis, Missouri. I couldn't help but note the irony of the day, as October 21st was the date of our Federal Election here in Canada. (Don't worry -- we both took advantage of advance polling to ensure we could still cast our votes!)
It felt a bit strange traveling down to the USA on election day, to pursue medical care that adults with Cerebral Palsy STILL can't access here in Canada. (But...that's another blog/rant to write about, for another time!)
Before long, we reached the border crossing and soon found ourselves State-Side.
From there, the time flew (at least for me, having taken on this trek once before!). We stopped in Stevensville, Michigan overnight for our half-way point and enjoyed a tasty meal with a home-cooked feel, at Cracker Barrel. (For my US friends, how have you not told me about this place, before?! lol. My Aunt and I loved it!)
The next morning, we began the second leg of our trip, which again seemed quite quick. We had a lot of laughs, several pit stops, and plenty of good chats on the drive down, and soon I found myself back in the beautiful Forest Park area of St. Louis that I love. Once unpacked and settled in at our home away from home for the next week, we soon called it a night and got some rest. I smiled before falling asleep, knowing that exactly to the day, I would start my 7th month spasticity-free back in the place where it all began.
The next day (Wednesday) was packed full of appointments back-to-back-to-back. While we were on our way over to the Children's Hospital for them, I ran into my favourite person of all time in St. Louis. I had barely come around the corner before John's face erupted into a giant smile, and he gave me the biggest hug! He had no idea we were coming and I doubted he'd remember me from 7 months ago since he sees literally thousands of guests every year. And yet....
I simply adore this man with a giant heart, a humble spirit and a zest for life that I've never sensed in anyone else. He was the bright light during my SDR stay especially on the days that were most difficult. He works as a security guard and is a man of many talents; the biggest one of which is bringing pure joy to the kids and families he greets. Each day of the week, John has a new theme to delight the kids, and this day just happened to be "Giraffe Wednesday!" lol. (I didn't get them in the pic, but imagine a LONG ledge lined up with every giraffe figurine, in every size you can imagine, waiting for the kids to see and play with. It's adorable!
After a big hug and quick photo and a speedy reunion with John, we were on our way to see Dr. Park for my 6 month review and progress check.
Our visit was brief and to the point - Dr. Park wastes little time and speaks his mind, which I've grown accustomed to now having met with him on four separate occasions. Before we had even greeted each other, or had a chance to sit down, he took one serious look at me and commented that my left knee was "much worse," "very bad" and "very bent". (Not exactly the happy opening I'd hoped for since I've worked my butt off in PT and in the gym for the last 6 months now after having SDR at the age of 37! But hey.) It shook me and crushed my spirits a little to hear this right off the top (and especially to see the concern or disappointment on his face --I couldn't quite discern which it was, or perhaps it might've been a combination of both), but for as much as those words stung, he wasn't wrong and he only confirmed what I had been experiencing - and explaining to his team - for months. From there, the discussion quickly turned to PERCS (muscle and tendon lengthening to relieve contractures and ease/improve my joint range of motion). It was his opinion that I needed my hamstrings lengthened on both legs without delay, in order to relieve the strain on my knees. With that, he consented to proceeding with PERCS, offered some new suggestions to work with for the tightness and high tone I still have in my feet, answered the questions I had, and then sent us on our way. It was a bit of a whirlwind and I barely had time to process it all, before it was over.
Next up, I had my physical therapy evaluation with the lovely Miss Jackie. While most post-op adults are required to run through a series of movements to track their progress since SDR, Jackie opted to not have me do that because she knew that it would undoubtedly flare up my joint pain. So instead, she was much more interested in using this time to help get to the root of my knee pain.
It was hard to talk about my struggles and I teared up before I even got a few words out, but she was incredibly kind and understanding. We talked in depth about how and when the knee flares up, and what happens when it does. She had me do a few movements and some walking with and without my cane. Before long, it was clear to her that my Illiotibial Band (ITB) was the likely culprit of my pain. At first, this made my heart sink because PERCS doesn't address the ITB and it's typically not something that can be corrected by surgery. But as she went on to discover, I've also developed a significant functional leg length discrepancy since SDR and to compensate, I have been shifting weight poorly from side-to-side which was further straining my bad knee.
With that, she stepped out briefly and soon returned with a heel lift to place in my right shoe. After a few modifications, we found the right size and fit. As soon as I put my shoe on and took a few steps, I was flabbergasted! My right leg immediately straightened out, I could feel my calf muscles activate in that leg for the first time (ever!) and this made it a million times easier to pick up my feet! If that wasn't enough, with the lift, my left knee also stopped collapsing in nearly as badly! I cried again but from relief, this time.
As Jackie went on to explain, it was her thought that with getting my hamstrings lengthened to take the pressure off my IT band (which by her description was likely "screaming at this stage"), using the heel lift to facilitate better weight transfer, and then also continuing to work on building hip strength after surgery, that this combination would all likely make a significant difference in my knee pain. She couldn't say with certainty if it would fully resolve post-PERCS, but she believed that surgery wouldn't make it worse, and that this was my best shot at improvement. I can't describe how important it felt to truly be heard and have my concerns be so fully understood, but I am so grateful that I requested my PT visit with her directly because she definitely knows adult CP inside and out!
From there, she checked my overall range of motion in my lower body and found that every marker had slightly improved since SDR, except for my grumpy old knee which had become tighter and lost range. I was happy for the improvements - knowing that they come slowly for adults my age - and I was pleased that my left knee would finally get the help it needed.
We also talked about some troubles I'm having with my right ankle and within moments, she gave me some new exercises to incorporate into my program back home that should help. Lastly, we chatted about the possibility of having PERCS on my hip adductors at the same time as the hamstrings, since they too desperately need lengthening, but it was her opinion that I'd have a much better outcome rehabbing those areas separately, a year or so apart.
After our appointment came to a close and I gave her a big, teary, grateful hug, we took a picture together. I thanked her as best as I could in the moment for taking the time to really hear me and my concerns. (I also asked if she could just come back with us to Canada forever....but unfortunately she said that wouldn't quite work out!)
From there, I had my consultation with Dr. Dobbs (the orthopedic surgeon who created this PERCS technique, which is considered to be less invasive and more successful than traditional lengthening approaches I had as a child.) His friendly and kind demeanor put me at ease right away, and it was a relief to finally talk with him in person after having exchanged so many emails!
He noted immediately that my hamstrings were exceptionally tight, and that my left one in particular was especially problematic. He was quick too, to spot that my adductors were also very tight, short and in need of a surgical release since they too were pulling on the knee. We talked over my options (which also meant that he patiently allowed me to ask every single question I had on my LONG list of queries that had been prepared ahead of time!). I was grateful once more to fully be heard and understood. In the end, he reiterated what Jackie had said --that he couldn't be certain that hamstring PERCS would cure my knee pain 100%...but he believed that it was my best option - that we needed to pursue in short order - because leaving the knee as is, would only result in a quick, irreversible future decline.
From there, we talked about my rogue right foot that struggles to pull up its toes, and while we have our theories on why this is, it was his opinion that we first deal with the knee since not everything could be done at once anyway, given my age. He also suspected that my right foot simply needed more targeted strengthening work, and not necessarily further surgical intervention, so that was a welcome relief.
So we settled on lengthening just my hamstrings -- with an intention to address my adductors down the road as my healing continues and I regain hamstring strength. With that, consents were signed, and my PERCS surgery was set...for THAT FRIDAY afternoon!!! (It's a bit surreal how quickly things move in St. Louis, compared to back home.)
One more time, I was so grateful that I could move forward with this on the spot, thanks to the fundraising support we had received to cover both SDR and one PERCS surgery. Without it, there's no way this all could've happened on the schedule it would need to. In the whirlwind that was that visit, I forgot to ask for a picture with Dr. Dobbs, but I'll be sure to request one when I return next year for a progress check!
That night, my Aunt and I made our way over to the St. Louis version of Little Italy, and had an amazing dinner at "Mama's on the Hill". It was delicious and a place that I would enthusiastically recommend time and time again! The owner, Michael was welcoming and hilarious (he snapped a pic with us as soon as he learned we came all the way from Canada to enjoy his restaurant!), and as it turns out, their bartender was also originally from Canada, specifically the Scarborough area! We chatted for a bit, and laughed at just how small and connected this big world can feel sometimes. We had a great time!
The following morning, I had several pre-op appointments over the "CAM" (Center for Advanced Medicine) at Barnes Jewish Hospital and then from there, all that was left to do was wait until my surgery the following afternoon.
Even though Dr. Park, Jackie and Dr. Dobbs each seemed certain in their recommendations, I'll be honest in saying that I still felt terrified to take this next step. Not in terms of the surgery and the painful, tough recovery that lie ahead (because as Dr. Park warned me repeatedly, hamstring release as an adult is very hard and not for the faint of heart!)... but scared that it wouldn't help... that I'd still have this knee pain afterward, which would then lead me to be out of options.
It was an emotional day for me with a lot of tears shed in private, as I tried to otherwise keep it together. To those who helped me through it (you know who you are...special shout-out to my two beautiful nieces who are wonderfully wise beyond their years!), "Thank You" will never, ever be thanks enough.
In the end, I knew in my heart I had to proceed, and had to take that leap of faith because this was the best chance I had at that independent future I continue to fight for. I would have to trust in the medical team that got me this far, and trust in my resilience to move forward no matter the outcome....and somehow make peace with however it turned out. This was by far the hardest decision I've ever had to make --much more so even than SDR, which some may find surprising. The decision was a heavy one for me, full of uncertainty, lacking a guarantee, and it was a big reminder that no matter how hard I try, there will always be some outcomes beyond my control that I still have to roll the dice on.
Never, ever did I imagine that after all I'd been through, my mobility would ultimately be that thing I'd be forced to gamble on, in the end.
Click here to read Part 3
Go back to read Part 1