Physical Therapy Kickoff

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?!

One Week Later

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.

Post Op Walking Videos!

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.

Post Op Day 4

I got a late start to the day because I was extremely tired.  Apologies for the late update.

Morning PT

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.

Afternoon PT

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:

  • Walked about 1450 feet with the rolling walker
  • Walked another 1450 feet with the rolling walker after a bit of rest
  • Stood up using only my leg muscles
  • Walked up and then down 5 steps
  • Walked without a walker for 70 feet

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!

Walking Post SDR

This afternoon I my second round of PT and it was a very interesting experience. Here are the activities I did during PT today:

  • Practiced standing up and sitting down 2x
  • Walked out of my hospital room, using a 2 wheeled walker
  • Walked up a hallway with a 2 wheeled walker
  • Walked back up the same hallway with a 2 wheeled walker
  • Walked the same hallway a 3rd time with a 4 wheeled walker (much less stability than the 2 wheeled walker)
  • Swung my legs at knee back and forth

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.

Rise From Your Grave Bed

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.

Rough Night

Last night was pretty rough. Out of nowhere I got what I will call a flash fever. I was shivering for a while and had a temperature of 102. I was covered in sweat. 3 hours later the fever had come down quite a bit and I was feeling much better. The nursing staff here is phenomenal and they were all over me while I was sick. I also developed a headache and had trouble sleeping.

Other than that I have been noticing daily changes in my strength level and seem to be able to do more with my legs each day. Tomorrow morning they will transition me off of the magic elixir (Bupivacaine) and on to oral pain meds so I can get out of bed. I am really looking forward to it.

Post Op Day 2

Dr. Park just came by to see me and reiterated that he thinks the surgery went really well. He is very optimistic that I will have no residual spasticity!

Yesterday I was a little worried because I could not lift my legs at all so I asked to see the surgical resident. He pretty much told me to ‘pump my breaks’ and reminded me that I was not even out of surgery for 10 hours at that point. Fast forward to this morning – I was able to lift my legs up a bit, hold them in the air, and bend them. I cannot wait until Monday when I will have the chance to stand-up and maybe give walking a go.

A few of you have asked if I noticed any increase in control and flexibility. I don’t know yet because the “magic elixir” is still doing its thing so my legs are pretty numb. I am the first adult they are using an epidural on post op and Dr. Park just told me that with the old meds that they used post-op I would be in excruciating pain right now.

So far so good. The only frustrating thing is being stuck in bed and laying flat. But it’s not that big of a deal in the grand scheme of things.


Hi Everyone,

I am setup in a room now. The surgeon says everything went well. I am not sure what magic elixir they have in the pain meds but I am virtually no pain! Awesome.

I will keep this brief as I am posting from my phone. Which is now back where back where it belongs – right at my side!