This happened today in the car on the way to physical therapy. It might seem small to many of you, however, I was never able to sit like this before the operation. I would need to hold my leg with one of my hands.
This past Friday marks 2 weeks since I had the rhizotomy and I have made some significant strides. Saturday, out of nowhere, I stopped using the walker in the house and I have become more comfortable without it over the past 2 days. I will still use the walker when I go out, however, this is great progress.
Over the weekend some friends and family came by for a visit and this was the first time any of them have seen me since the operation. To say that everyone was amazed is an understatement. One of my sisters said the difference was astonishing and a few other people said the change was unbelievable.
Given the speed at which changes seem to be happening so far my physical therapist and I have worked out a schedule to take video every Friday to document my progress. So I have 2 new videos below:
First we have a short video of me walking from a side view:
Note how fluid my gait is and that there has been a dramatic reduction in how much I lean back to balance myself.
The second video is me going up and down some stairs:
The most striking thing here is how much I am able to bend my knees on each step. I did not the flexibility to do that before the operation. I also continue to feel some “new” muscles activate whenever I use stairs. It tends to be at the top of the motion of lifting my leg to go up stairs. I also have more control when going down the stairs. A week ago I had to really focus my mind on not just dropping my leg; that happens more naturally now.
When I compare these 2 videos to the previous videos I took shortly after the surgery the difference is amazing – this is only one week later and with 4 PT sessions.
I am extremely happy with my progress. I was told that I should expect to see major changes during the first 6 months after the rhizotomy and then some more additional gains after that. Thus, I know there are more good developments to come.
A couple of other notes – before I had the rhizotomy my body was extremely stiff when I woke up every morning. All of my muscles felt like they needed to marinate in WD-40 for me to get up and get going. Now, I wake up and can just hop out of bed – no pain, no discomfort! Finally, I tried to ease into doing some light working out by doing push ups on Saturday morning. During the first one I felt some pain around the incision area and that, as they say, was that. I will give it another week or so before I try again.
Yesterday I had my second physical therapy appointment. This was the first “real” session that involved doing some exercises. Over the course of the hour we did the following:
The warmup on the bike was great. I have always enjoyed biking around NYC and Central Park but have never been able to go that fast and would often struggle on hills. I look forward to biking around this spring and taking my riding to the next level.
This next part of PT was the most difficult and frustrating part of the day. My physical therapist (Kristin) noticed my core muscles are very weak and this is affecting my gait. So we started with a core activation exercise followed by side planks. These 2 exercises were not so bad. The next exercise had me flat on my stomach – I had to focus on tightening my core muscles, activating my glutes, and then lifting one of my legs up while holding my abs and glutes tight. Coordinating the activation of 3 muscle groups was very hard and a bit frustrating. I have never been able to isolate the use of any of these muscle groups before. It’s at this point that it dawned on me how challenging this will be. I know that I will succeed in the end, however, my impatient nature is struggling with how hard it is right now. I keep reminding myself of what a friend of mine told me earlier this week:
“It’s not like a movie where things happen overnight. It’s all a slow progression.”
It will take some time rewrite over 30 years of “programming” with respect to how I operate my body and I need to internalize this concept.
Finally, we did some bodyweight squats to close out the PT session. I have been doing squats for years as a part of my workout routine. Never, not once, in years of doing squats, even with heavy weights, have I ever felt my glutes activate the way they did yesterday.
Strengthening exercises are the easy part of rehab in my opinion. It’s a formula – you do the necessary exercises with a high level of discipline and regularity and you will see results. The really tough part is going to be breaking my muscle memory and learning to do things the right way.
This week I noticed that I can know keep my feet flat on the floor when I bend my knees. Something that I could only do intermittently and with assistance before SDR. As inconsequential as this may seem to some of you. It’s all these small little changes that I use to fuel my fire my fire and keep pushing forward.
Yesterday I had my first physical therapy session and I met my new therapist. She is well versed in the operation and made several observations on how we can improve my gait. I was very pleased with her knowledge given the importance of physical therapy in the post rhizotomy process.
The therapist spent the majority of the appointment measuring my range of motion, performing strength tests, and documenting other stats. In general she noticed that I seemed to have a good level of strength but needed to learn how to use some muscles in isolation. That said there are some areas where I will need to increase my strength such as my quads on the left side and my hamstrings in both legs which are very weak. She also tested for spasticity several times and did not detect any! I don’t want to say the spasticity is gone since it has been less than 2 weeks but it looks promising.
Towards the end of the appointment I asked the PT if I could try riding a stationary bike for a few minutes and we gave it a shot. The feeling of pedaling is very different now. I noticed a fluidity and consistency in my pedaling that was not possible before.
One last note – at the end of my appointment I was waiting for my PT to give me something and one of the other therapists saw me and asked what I was doing back (I used to PT at this place last year) and I explained that I had a rhizotomy done. She asked me to walk (with the walker) so she could see the difference. As I started walking I looked at her. She did not say anything but the “oh my god/I can’t believe it” expression on her face said it all as her jaw dropped (it really did) and she whispered something to my therapist.
I hit a small milestone today that made me pretty happy. One of the exercises in the home exercise program is to stand up from sitting 10x with no assistance. I tried to do this on Friday and could barely do it 1x. I am not sure if I was held back by muscle weakness or nerve pain (I get the sense that it was my future archmemesis — The Sciatic Nerve) but I was able to stand up from sitting 11x in a row today.
Another things I have noticed is how much easier stretching has become. Anyone with CP will tell you that stretching is a chore that required a good deal of effort for marginal returns. Now when I stretch it’s effortless and I honestly feel like a kid playing with a shiny new toy – what else can this baby do?!
Not that much excitement over the past couple of days. I have been resting quite a bit and doing my best to do laps from one end of the house to the other.
One realization I have come to is that a sensation I had assumed was muscle weakness is actually sciatic nerve pain. When I do certain motions I feel a pain in my left glute/buttock that runs down my whole leg. When this pain kicks in it is a force to be reckoned with and I feel paralyzed. From talking to other SDR warriors and the staff in St. Louis I have learned that this is part of the process and can happen for the first couple of months post rhizotomy. So I am focusing on learning what motions seem to set it off and what exercises I can do to mitigate the pain.
I want to take this opportunity to talk a little bit more about the “magic elixir” that I had for the first 3 days post op. A couple of weeks before my operation Dr. Park announced that he was using a new pain management protocol post SDR that would dramatically reduce the pain patients experience. As part of the new pain treatment I had an epidural catheter placed at some point during the operation and when I woke up post op I was in no pain and fully alert. In fact when I left the recovery area and was moved to a room my nurse commented that I was not behaving like someone who just had surgery because I was laughing and joking around with my family. This continued for the next couple of days and I did not experience an increase in pain when the medicine (bupivacaine) was discontinued 48 hours post op. Dr. Park mentioned to me that under the old protocol the pain could get to be really intense; thus this sounds like an excellent enhancement to the pain management process for SDR patients.
I have my first physical therapy session on Monday and I am greatly looking forward to it. I cannot wait to start phase 2 of the SDR process.
So my family and I got home late last night. The trip was pretty uneventful and I have to say that Delta’s service was excellent (I was in a wheelchair). I went to bed asap. This morning I woke up for about an hour after having the best sleep I have had in days. After an hour I was still tired so I went back to bed! Tonight I took some time to fix some of the video we took at the hospital. He we go:
Walking Pre Op – Note the trunk extension (leaning back) as I walk as well the very stiff gait pattern.
Walking Day 3 Post Op – I was the first person who had SDR to walk on day 3 post op. As you will see it is not very steady but you can already see a difference from the pre op video. My stride length has increased and I have more knee flexion.
Walking Day 3 Post Op – This video is similar to the previous one but is focused on my legs where the increased knee flexion is more apparent.
Walking Day 4 – Here I am walking without a walker shot from a side view. Even though my stride length is shorter than with the walker I had to remind myself this was only 4 days post op. The big thing to note here is that there is not much trunk extension (leaning back) as I walk. My posture is pretty straight
Walking Up Stairs – what I found remarkable about this video is that for the most part I am able to lift my legs straight up to get to the next step. Before the SDR the only way for me to go up stairs was for me to swing my leg around in a pretty wide arch, particularly with my right leg.
The biggest thing I (and my family who was at the hospital) is that we were all amazed at the changes just 3 -4 days after having the operation. Of course, I still have a long road ahead; but this is very encouraging. I am interested to hear what you think of the videos in the comments.
I got a late start to the day because I was extremely tired. Apologies for the late update.
This session started at noon instead of 10:00 because I was too tired at 10:00. We worked exclusively on log rolling which is how I need to get out of bed because I am not allowed to twist my torso for a few weeks.
Karen showed up at 3 for us to give PT a go and I was still tired from the morning session. So she agreed to come back at 4. Today I:
Things one would expect to be easy were very difficult. The log rolling in particular was a real challenge. As I tried to roll I felt my glute muscles trying to fire and they were not helpful at all. This continues to be a challenge for me as the temptation id to use my upper body muscles to cheat.
Walking with the walker is probably the easiest exercise for me as you might have guessed from the distance I was able to travel. Even with the walker it is far from perfect but it’s a great way for me to adjust to my new world order. The main challenge here continues to be coordination and learning how to control my the muscles. My legs feel like uncontrollable noodles.
Standing up using only my leg muscles, versus propping my hands on the chair and pushing up, I realized that for the first time ever I felt all of the muscles in my quads, hip, and hamstrings firing. It is a very foreign sensation and I still have to remind myself to “straighten out” at the end of the motion.
Next I tried the steps and oddly enough going up was easier than coming back down. When I was walking down the steps it took every ounce of mental and physical energy I had to not let my leg drop like a rock. Another important difference is that I am almost able to lift my legs straight when go up stairs. In the past the only way I could go up stairs was to swing my legs over and around each step in a circular motion. It’s still not perfect but the difference is already significant.
Finally, we arrived at the main event and I gave walking with no assistance a shot. I was able to walk a reasonable distance but my balance will need work and my strides were about 1/4 the length of my strides with the walker. The major observation here is that I was able to stay completely straight while walking. In the past I always lurched with each step and my upper body would lean back to keep me from falling over — it was refreshing to note that this issue did not present itself today.
Of all the activities I did today walking with no assistance and stairs were the informative. They were a very powerful signal to me of how much work I have ahead of me. Everyone warned me about this before the surgery, and I didn’t doubt it, but when you realize it yourself via direct experience the message is more powerful.
Some of you have contacted me asking for video. I did video today’s activity and compared it to some pre-op videos and will definitely share those. However, I am too tired to set that up tonight!
This afternoon I my second round of PT and it was a very interesting experience. Here are the activities I did during PT today:
I recorded all of this activity on my camera and reviewed with my family afterwards. I must say I am overwhelmed with emotion at what I experienced today. I feel like I am operating a body that is not my own and experienced a level of fluidity and smoothness that I never dreamed possible. It’s hard to believe that just 3 days ago I had surgery to improve my mobility. I feel the need to stress the fact that I am not being hyperbolic here; the difference was truly seemed amazing compared to what I could do just 4 days ago.
Of course, I did just have major surgery and I have a great deal of rehab ahead of me. My gait was smoother than it has ever been and felt great but my coordination will need work, I have a lot of muscle strengthening to do, and feel like I will need to learn how to walk anew. Also, my legs feel like noodles. While I was doing PT today I noticed I have to deliberately think about standing up straight and when I do that I feel muscles activating that I have never felt before. Finally, my glutei are on fire because they are not used to this level of activity.
I still have some pain around the area of the incision when I move but that is to be expected and I am sure I will experience more pain as discomfort as my rehab continues. Dr. Park just stopped in as I was typing this and reviewed what I did today and he was pleased with my progress. All in all I feel good and am somewhat tired from the PT activity so I will be taking it easy at Chateau Barnes-Jewish for the rest of the night.
This morning we discontinued my use of the magic elixir at around 6:30. This was all in preparation for me to do physical therapy later in the day. I got out of bed for PT at 11:00 this morning. Which felt amazing. You haven’t lived until you have spent 3 days lying completely flat in bed. You just haven’t.
Physical Therapy was great but a little painful. We started off with the therapist doing some simple range of motion and strength tests to assess my abilities. After that, she taught me how I have to sit-up, roll over, and stand. Until the incision site heals I am not allowed to twist my back at all so I have to be very mindful of that.
PT went really well. I practically begged (read implored) the therapist to let me walk but she was having none of it. Instead we practiced sitting up and standing which was an interesting experience. Standing up and straightening my legs felt very odd as I felt some muscles fire that I haven’t before. I was able to do it under my own strength though which the therapist said was pretty good. I stood up from a sitting position 3x. She also tested for extra muscle tone/spasticity and was unable to detect any. So far, so good. I have another PT session at 3 where I will try and walk with either parallel bars or a walker depending on how I do.
I have also noticed that my legs are sensitive and I feel needles when pressure is applied. This is apparently a part of the healing process because of the nerve work during surgery.
Recognize the geeky game reference in the title? Let me know in the comments.