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.
A quick site update: I have created a new page on the blog call “Videos.” You can see the link to the Videos page in the main navigation above. This page includes all videos posted to date and will include all videos I post going forward.
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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.
I continue to go to physical therapy 3x/week and do my home program every morning and still feel like I am making progress. I often forget how weak my legs still are and do something that I really shouldn’t. There have also been a few days when I pushed my body to the extreme limit ended up completely exhausted. That said, it feels great when I can pull something off that I was unable to do before – this past week I gained the ability to stand up from a half kneel without using my arms to pull myself up. It’s not the smoothest motion but at least it’s happening.
Last week we started to use Electrical Muscle Stimulation (EMS) on some of my muscles to push along the strengthening process. EMS involves sending electrical impulses to certain muscles to stimulate them. The muscle receives a current for an interval, say 15 seconds, and while the current is on I perform as many reps as I can of specific exercise. The current then turns off for 10 seconds so that I can rest and the process repeats for 5 minutes. For example, when we use EMS on my quads I do leg extensions. We are using EMS on my hamstrings, quads, and glutes. There is a noticeable difference in the motion of my legs when the EMS is active so I am hopeful that using this technique will produce some long-term improvements.
One thing I have noticed is that if I do not stretch in the morning for some reason I can notice a difference in my flexibility throughout the day. So if I ever think about getting lazy with regards to the stretching I have a powerful reminder on how important it is.
Today I have a short video of me doing some box jumps at the gym. In this video I am jumping on to a platform that is 13 inches high. I was able to do this before the surgery after months of training and 13 inches was my plateau. This past Sunday was my first time doing box jumps since the operation and I was able to do jump onto the 13 inch platform with ease! So I think it will only get better from here. That said, I showed my physical therapist the video today and she gently suggested (read – told me) that I slow down and not do the box jumps again for a while.
I am happy to say that I am continuing to make progress. Last Friday marked my 4th week of physical therapy so my therapist did a one-month assessment to document how I was doing. We saw significant improvement in my range of motion and strength in almost every measurement. I was particularly happy that my hips are getting stronger since that seemed to be my weakest area coming out of surgery.
Last week I started working out at the gym again and doing therapy in the pool. Doing exercise in the pool is great because I have much more range of motion than normal so it allows me to properly perform the exercises I have a hard time doing. Working out at the gym has been interesting because there are some things I used to do easily in the gym that are now quite challenging. I never realized how much the extra tone from the spasticity was helping me to do certain exercises such as squats and leg extensions. Needless to say I have months of strength training ahead of me. On the flip side, there are exercises that I have unsuccessfully tried to do in the past (such as using the rowing machine) that I can do! I also feel muscle soreness in some new areas while I am exercising.
Yesterday I picked up my new shoe inserts to correct for my leg length difference and the second I put on the new orthotic and started walking I felt very awkward. Apparently it will take me a few weeks to adjust since the insert has an arch support and I am flat-footed. So I am going through the experience of adjusting to a new feeling when I walk again
I was hanging out with some friends this past weekend and walking around the city. As we walked one of my friends mentioned to me that he always used to have to walk slowly when he was with me before I had the operation. However, he mentioned that I am now able to keep pace with him. I believe this is from a combination of increased stride length and my ability to walk more quickly.
I have a new video this week of me walking 5 weeks post op; for comparison I am also including a video of me walking before the operation as well.
5 weeks post op:
Before the operation:
Last Friday marked 4 weeks since the operation. Thus far everything is still going well. It’s very rewarding to continually notice gains in strength and flexibility; these rewards serve as my fuel to keep working hard. Even as I make this progress I have to say – I find the mental aspect of trying to activate/isolate certain muscles to be very difficult. Not being able to directly control certain muscles is very frustrating. In spite of the mental challenges; I am still amazed at how quickly things have been changing.
Beginning next week I am going to drop down to physical therapy 3x a week and start working out at the gym again. I am very happy about this since I have been dying to return to the gym. It will also give me the opportunity to start rehab in the pool which should be beneficial.
Since the last update I feel more confident on my feet and no longer use a walker. I have been going for walks almost daily and my gait feels more fluid and smoother than it has ever been. Tomorrow, my therapist will have me practice walking with a cane to see if it makes a difference.
This week I woke up one morning and noticed that my legs were even more loose than before which was a bit of an odd sensation. After consulting with my friend Todd who had the same operation a few months before me he told me that this will continue to happen over the next few months. It’s great to hear that I can expect this but it also means I have to adjust a bit each time it happens.
Finally, I have two new videos this week:
The first is a short video of me walking at physical therapy. One thing I noticed, and my therapist Kristin confirmed, is that I do not bend my left leg when I am walking. Kristin believes this is to due to hip weakness.
The second video is me going up and down stairs. I get more comfortable tackling stairs a daily basis and see continued improvement in the level of control I have going down stairs.
It’s really nice out today so I went for a walk (with walker). I tried to jog a couple of times – my stride length decreased significantly and my feet barely left the ground…too soon.
Physical therapy was great last week. There is a noticeable increase in my strength. The big achievement is that I am now able to do straight leg raises, which I was unable to do just a week before. Since things are going well my therapist (Kristin) has given me a new home program and we will move on to more ‘advanced’ stuff in PT.
There are a few things that have become apparent in PT that need work:
- My hamstrings are very weak. The right leg in particular. I cannot perform hamstring curls with the right leg
- Core strength
- I do not shift my weight to my left leg when walking
Yesterday I went out for a long walk. Since I love tracking results I downloaded RunKeeper for my phone to track the distance. I walked 1.8 miles (with the walker). I have nothing to benchmark that against but I am happy with these results. I woke up this morning expecting my muscles to be a little achy today since that is the most exercise I have done since the operation but everything was fine and I did my home therapy program this morning with no issues.
Like many people who have Cerebral Palsy I have one leg that is slightly longer than the other. This can be an expensive to contend with — you either have a shoe maker build a lift into the sole of each pair of shoes or sneakers that you own ($60 per shoe) or have an insert ($75) made that you slide into your footwear. The downside of the latter option is that I have to buy shoes that are too big for me in order for the insert to fit. My leg length difference is about 1 cm (there is some controversy on the exact measurement) and I am going to an orthotist today to get fitted for a custom shoe insert. The hope is that the custom insert will balance out my legs and have a noticeable impact on my gait.
I am now a little over 3 weeks post op and so far I have absolutely no regrets. I am progressing faster than we projected and any pain or discomfort I have experienced is far outweighed by the gains I have experienced so far. This makes me feel great because all of my doctors strongly advised me against having the rhizotomy.
I took some video on Friday but it’s messed up and I cannot upload it. In lieu of video of me check out this video I found on YouTube that gives you a glimpse of the how Dr. Park performs the operation. Jump to the 3:10 marker in the video for the relevant segment. When you see how the nerve testing is performed it’s pretty amazing.