Since launching this blog I have been fielding questions about my experience and the SDR process from people who are thinking of having the surgery. Below you will find a collection of the questions I have been asked and my responses.
What has improved the most? The biggest improvement has been the increase in fluidity and range of motion with the reduction of my spasticity. My legs are generally much less stiff and my movements are easier and more fluid. You can see the difference in the before and after videos on the website. I can run now (I still hope to improve my running skills) and that wasn’t happening before the surgery.
What hasn’t improved that you hoped would? I would say right now I am struggling with range of motion in my hamstrings/active knee flexion and that is pretty frustrating. We are still working on this and I am hopeful that it will get better.
What new achievement are you most excited about? I would say the increases in strength and stability I have seen in areas I could not strengthen before I had the surgery. My core strength has increased quite a bit since the surgery and that has helped me in some amazing ways. I am more stable on my feet and am able to recover from a misstep or stumble without falling. One of the great benefits of this is that I no longer feel as uncomfortable as I used to in crowded areas because I navigate through a crowd in ways I never dreamed of before the surgery. For someone who lives in NYC and takes the subway daily; that’s a pretty big win!
What was the biggest struggle in the recovery? I don’t think I have a single biggest struggle. The only thing I really have to emphasize that is a struggle is that the rehab takes a HUGE commitment and is hard work – mentally, physically, and emotionally. It’s also pretty humbling. Things do not always go too well and I find that I struggle with things that look as though they should be very easy to do.
Any regrets or things you wish you had done differently? I can honestly say I do not have a single regret. The only regret I have is that I did not learn about this procedure or have one of the many doctors that treated me tell about this procedure earlier. As with many people who have CP, I have had several surgeries; some of which could have been avoided if I had the SDR earlier in life.
Did any of the reported side effects stick around for you? (bladder issues, leg and foot sensitivity, etc.) I feel lucky in that I do not seem to have any side effects 5 months post op. Occasionally I have an odd sensation in my legs but it’s temporary and goes away. Recently, I have noticed that as I am doing new things I feel extra soreness and weird sensations but they do not hamper me from doing anything.
Post-op pain is a given, but if you have any tips on how to prepare or deal with it? I did not find the pain to be too unbearable post-op. A few weeks before I had the surgery Dr. Park changed the post-op pain protocol to use an epidural and that managed my pain pretty well. For me the pain level was low enough that I was asking for my phone as soon as I woke up after the operation! Obviously, I do not know what it will be like for others but in my experience it was manageable.
How did you handle the plane ride back home? Were you able to walk at all or at least stand at that point? The plane ride was fine. I flew back on Delta and the staff was extremely helpful. I was in a wheelchair and could stand and walk with a walker or assistance. The only thing to remember is that your legs should not dangle so have something to put under your feet on the plane.
Can you tell me about your rehab schedule immediately post-op? (How many days a week? Hours a day?) Immediately post-op I had physical therapy with a therapist 4x a week and each session was about an hour. In addition to that I did stretching and a home program every day upon waking up which took a bit of time and then I also stretch at night before bed. It is definitely time-consuming and something you need to commit to. I would say about 2-3 hours a day in the period right after post op.
How long was it before you felt confident standing, or walking short distances? Indoors? Out? I was getting around in the house with a walker once I got home from St. Louis. This was about 6 days post op. I did find that I felt tired pretty quickly and it took a couple of weeks to build up my stamina. I stayed with family for about 6 weeks or so after the surgery but I was able to start going for walks outdoors with the walker starting a couple of weeks or so post op.
How long did it take for you to return to work? Driving? Normal life? I think 6 – 8 weeks is a good approximation of when you can go back. As with the pain levels I think this varies from person to person. A return to normal life I think also depends on how your rehab goes. For me I think about 8 weeks out I felt comfortable getting around on my own without any assistance.
- What’s your rehab schedule like now? I am still doing physical therapy with a Physical therapist and in addition to that I have a home program that I follow every morning (exercises and stretching) and a night program (mostly stretching). In addition I also exercise at the gym regularly. I still have some strength building to do in a few areas.
If there is a something you would like to know about my experience so far feel free to email me or to drop me a line in the comments.
Update – There has been a great response to this post and many people have found it helpful. To make it easily accessible for new visitors to the site I have added a separate FAQ to the main navigation.
Everything is still going pretty well with physical therapy although progress is now much slower. I am still struggling with my hamstrings particularly as it relates to bending my knees. We are trying a variety of things and hopefully they will help. At this point I think the limited range of motion on my right leg is holding me back from improving my gait as I do not bend my right leg enough when walking.
Since the last update I have noticed several things that are easier. I spend a lot of time walking on the treadmill and ever since the surgery I have needed to hold on to the rails for stability. As of a couple of weeks ago I am now able to use the treadmill hands free which is a hump I have been wanting to get over a for a while. I have also noticed that my strength is increasing as well as my endurance. This has all translated to easier movements and being able to engage in exercise for longer periods of time.
Finally, my running is much improved. I feel as though I have much more control of my movements when running now and it looks and feels more fluid. It’s hard to believe that this was not possible 6 months ago! I took a short video of me running over the weekend and have included it below.
In the last update I posted a series of goals that I hope to achieve. I have not done an assessment since then so I will provide an update on how that is going once my physical therapist and I do the necessary tests.
Last week I flew to St. Louis to meet with Dr. Park and the physical therapy team for a 4 month post op checkup. Generally the team in St. Louis thinks I am doing pretty well and they provided some great feedback on new things I should be doing in physical therapy. The main thing that Dr. Park pointed out is that I need to stretch more to improve my flexibility so I have started varying the types of stretches I do and trying to do more stretching each day.
I am still working on improving my running powers. It is slowly getting better but I think it’s going to take quite a bit of work to get all my “systems” working in tandem to achieve a good running pattern. The main issue is that my right leg is notably more stiff than my left leg and my right toes sometimes catch when I run. I will address how we plan to attack this problem below.
My balance continues to improve and this week I was able to stand on my left leg for 16 seconds on my left leg and 12 seconds on my right leg, without falling over. Before the surgery I was not able to achieve 10 seconds on either leg. Of all of the improvements I have seen so far the improvement in balance definitely ranks as one of the most beneficial. The improved balance has affected so many different aspects of my mobility. I now feel much more comfortable navigating through crowded spaces; something I used to hate to do before. I never felt quite safe in crowded area and the slightest bump could lead to me falling over. I still have work to do in this space but it’s great to see all the crazy core exercises are working.
Based on the feedback from Dr. Park and the physical therapy team in St. Louis my physical therapist and I setup some new goals for the next 8 weeks.
- Strengthen my calf muscles, particularly the soleus. This should increase my step length, reduce the toe catching on my right foot, and help me achieve a smoother gait.
- Increase dorsiflexion range of motion to 20 degrees. I am currently at about 15 degrees.
- Increase hamstring strength and range of motion (this was on the last set of goals, let’s call it an oldie but goody) to assist with foot clearance in the swing phase of walking.
- Consistently run for 15 feet without right toe catching.
- Stand on either leg for 20 seconds without losing my balance.
Now that I am 4 months out some friends have asked me if I think I made the right decision by having this surgery. There has not been one moment when I questioned my decision to go forward and so far I have no regrets. If you have been following this blog you know it’s a lot of work but I want to explicitly state that benefits I have seen far outweigh all the work I have been putting in and I have no indication that this will change. During the visit I asked Dr. Park how long does it take for the average adult patient to plateau and he told me a year so I am planning on firing on all cylinders for at least 8 more months.
Last week marked about 12 weeks of physical therapy since the surgery so my therapist took me through the Gross Motor Function Measure test to see how I am progressing. If you have been following this blog since the beginning you may recall that I took the same test the day before the surgery. My score went from an 86 (pre-op) to a 98 (now). Seeing this improvement in an objective measurement of my progress is encouraging but what’s important is how my life has improved as a result of the surgery and physical therapy.
Things that are awesome:
- I can run now – It’s not the most graceful running you will see and I have a lot of work to do so that I can learn to run in a controlled fashion but I can run now and that’s a big deal! No more just barely missing the subway for this guy.
- Dramatically improved balance – Before the surgery I would often trip while walking and the story always ended with me on the floor. I have plenty of bruises on my legs as reminders. I still trip sometimes while I am walking, but I am continually amazed that I now instinctively rebalance myself and resume a normal gait.
- Increased flexibility – The impact of this increased flexibility and range of motion is great. For example, In the past when I went out to a place that had bench style seating I always had to make sure to sit at the end because I could not easily lift my legs (if at all) to get over the bench. If I didn’t get that end seat and needed to get up at any point it became a whole production. This is no longer an issue. This example might seem silly but this happened enough for me to notice it as an issue.
- Less pain – I never realized how much pain the spasticity caused. As far as I knew all of the “uncomfortable” feelings I had throughout the day were normal. Apparently, the act of walking should not feel like dragging my body through a giant tub of molasses with bowling balls tethered to each leg and my joints should not feel like they need a bath in WD-40 when I get up in the morning! I never knew how easy and effortless it should feel.
Things that are not awesome but part of the process:
- Frustration – there have been days when things just do not go right in physical therapy and I get pissed off and come home and don’t want to do anything else. I know it sounds whiny but I want to be completely honest for readers that may stumble upon the blog and are considering having the surgery. Obviously, I get over it, but it happens.
- Testing Limits – more than a few times I have gone completely overboard with exercise and PT, which leads to an uncomfortable level of soreness that lasts for days. The only way to learn my limits is to keep pushing as hard as I can.
- Learning muscle control and coordination – This is a biggie and is still a work in progress. Phrases I constantly hear in PT:
- Abs tight
- Squeeze your glutes
- Activate your hamstrings
I barely have number 1 down and I can intermittently achieve 2 and 3.
- This is hard work – physical and mental.
In just 3 months I am achieving things that I was repeatedly told would never be possible. I don’t think there are words that exist in the English language that can express how amazing it all feels.
Just a quick note to say that yesterday, approximately 12 weeks post op I RAN for the first time, ever. I was at the gym working out and decided to give it a shot. After that, I ran (har har) to the locker room and grabbed my phone to capture a video. Not the best quality video ever — I had to prop my phone on some equipment at the gym to record this; but I really wanted to document this.
A great start! It felt really odd since my foot did not clear the ground a couple of times and I have not experienced the sensations associated with running before. I showed this video to my therapist this morning and asked me to keep practicing so that I can get to the point where I can run on the treadmill.
It’s been about 10 weeks since I have had the surgery and everything is still going well. I am still making progress but have shifted gears from rapid change/rapid results to a more slow and steady pace. Let’s just say at this point the rehab process is also a great lesson in patience.
My hamstrings are lagging behind the rest of my muscles and my physical therapist and I suspect that it may be mental as well as physical. I rely on my quads to do a lot movement that should be driven by my hamstrings. The electrical muscle stimulation is helping but I still find that I fall back to the old pattern of relying on my quads. I like to think that I can overcome this eventually but only time will tell. Apparently, it’s not that easy to reprogram decades of muscle memory!
I am still working on increasing my endurance so that I can walk for longer distances without my feet starting to drag (this happens when I get tired). Another thing I have noticed as I have become more active is that I sometimes have muscle spasms at night while I am sleeping. The muscle spasms are brief but they are strong enough to wake me up. I thought I was going to get away without having to deal with the muscle spasms but they caught up with me in the end.
For the next 4 weeks my PT and I have set the following goals:
1. Increase my hamstring strength to assist with clearance during the swing phase of walking.
2. Increase hip strength to try and balance out my gait on both sides
3. Increase my endurance so that I can maintain a fluid gait.
Obviously, I still have a lot of work to do but I do not want to leave with the impression that I feel as though things are not going well. The change in my quality of life has been great and my footwear will have a much longer lifespan, which is great for my wallet. Below is a picture of a pair of sneakers I wore before the SDR that were about 8 weeks old – I had to stop wearing them for obvious reasons. On the right are the sneakers I wore for a couple of weeks before the operation and everyday since then – about 12 weeks total. The difference speaks for itself!
Today marks 8 weeks since the surgery and 7 weeks of physical therapy. I will have a more substantive update later; for now I wanted to post a short video of me on stairs. While there is still room for improvement the difference between this and before the surgery is amazing. I was at the point where stairs were very difficult for me and I could not lift my legs in front of me — I had to swing my legs in a circular motion up and around each step.