rehab & recovery FAQ
How long will it take me to get back to baseline?
This is a tricky question to answer because it varies based on age, level of CP/HSP, rehab routine, pre-op strength and flexibility, and other factors. At 23, as a full-time independent walker before surgery, I started taking some wobbly independent steps at about 6 days post-surgery, but my legs felt like jelly for a while. I used a forearm crutch out in public until just under a month post-op and walked mostly independently indoors from day 9 (my first morning home) onward, brushing against walls and furniture for support in case one of my legs collapsed from weakness.
I was told to expect to need a walker for the first 3 or 4 weeks, but I didn’t end up needing it after that first week and was surprised at how quickly I regained my strength. It did take about 8 weeks or so until I felt back to pre-op strength and comfortable being fully independent in public, though. The amazing light and free feeling after SDR was sometimes unsettling when I needed to keep my balance in a crowd, because I didn’t feel “anchored” at all. Sometimes I felt like I was just going to float away. Other people who walked independently before surgery (especially older adults and those with more involved orthopedic issues) reported needing a walker or other assistive device for several weeks or months, so it’s tricky to predict.
It took me about 4 weeks before I could comfortably bend to pick up items off the floor. Carrying things was also tricky for balance reasons.
I started being able to put on shoes and socks after about 2 weeks, but that was after discovering that I could prop my feet up on a coffee table to avoid bending as much. Turning in bed was also tricky at first; I needed help for that until about day 7. Showering fully independently took me about 3 weeks. Again, everyone’s timeline is different though, and age and ability are major factors that determine the speed of recovery. Some people’s progress will be faster than mine and some slower, and it’s just important to remember that SDR recovery is a marathon, not a sprint!
Here’s an SDR journey video posted by Isabelle Dodeman-Lawless, who has mild spastic diplegia and had SDR as an older adult (posted with permission):
Will SDR improve my gait? Can you send me videos of your walking before and after surgery?
For some people, SDR has a very noticeable effect on gait; for others, the effect is more subtle. Young children generally exhibit more noticeable gait changes, as they haven’t had as much time to develop habits and orthopedic issues related to spasticity.
I’ve definitely noticed some improvements in my gait after SDR, but they aren’t completely obvious. Adults who pursue SDR for gait changes alone will likely be disappointed. For me, the greatest gifts of SDR are those that can’t be captured by a video or a photograph: I feel so much better. I can move freely and with less pain. For the first time in my life, I can fully relax my legs. These gifts mean more to me than a smooth gait pattern ever will.
I completely understand why people ask for videos, but I generally choose not to share videos of my walking. I’ve had my fill of people scrutinizing my gait! If you do a search on the SDR St. Louis Facebook group, though, you will find plenty of people who are willing to share clips!
What are the rehab requirements?
The physical therapy routine varies based on each patient’s situation, but it usually involves outpatient physical therapy 4–5 times per week for an hour a day, plus a daily home exercise and stretching program. Many adults change up this routine after their 4-month follow-up appointment (for US adults who go to St. Louis), switching to forms of exercise other than PT. This is especially true if their PT sessions are out-of-pocket.
I started with one hour of PT 5 times per week, then added an hour-long session with a (wonderful!) personal trainer after about a month. I reduced to 4 weekly PT sessions (plus once weekly personal training) after my 4-month follow-up, then 3 weekly sessions (plus personal training and home exercise) after PERCS at 9 months. I continued that routine until just over 2 years post-op, when I transitioned out of PT. At times throughout my recovery, I also substituted in other forms of exercise for PT, like reformer Pilates. But everyone’s schedule is different; it depends on personal, physical, and financial factors, as well as your own exercise preferences and what is available in your area.
Many different forms of exercise are beneficial: walking, jumping, climbing, yoga, horseback riding, swimming, bicycling, and rock-climbing, just to name a few. Integrating these into your rehab program can help prevent PT burnout and boredom, especially for children. (Note that that you will need to wait a couple weeks or more to resume certain activities, such as horseback riding and swimming, for example.)
When can I expect to return to work/school after SDR?
This is another tricky question to answer, as it depends on the severity of your CP/situation, as well as the type of work that you do. Some people return to work after only a few weeks if they have sit-down jobs or can get accommodations to work remotely. (Children often return to school after a few weeks, too—sometimes starting with half days and working their way up as they rebuild stamina.) At the time of my SDR in early July, I was enrolled in an online graduate program at Johns Hopkins and working from home. I took the summer off, and it was a great decision for me; I needed that time to focus on my rehab, rest, and recover. I found that I was tired all the time in the early stages of my recovery, and I had pain when sitting for long periods for the first 5 or 6 weeks. Others with more strenuous jobs or more difficult recoveries have needed to take 4+ months off; it all depends.
Also keep in mind that returning to work or study (if in college) too soon can negatively affect progress if these activities get in the way of the rehab process. To maximize their potential, many people opt to take additional time off work or (if in college) a gap year so they can focus on rehab, even if they’d be physically recovered enough to resume school or work.