Common Questions about having the SDR Surgery and the Rehab Process

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.

General Questions:

  • 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:

  • 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. 

Rehab Questions:

  • 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.

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6 thoughts on “Common Questions about having the SDR Surgery and the Rehab Process

  1. Hey Frantz – as you know my son is already post op but your honest posts helped in our decision making about surgery. In the UK there is some scepticism about SDR – posts like this will help others come to their own conclusions about whether or not it’s the right thing for them.

    On a lighter note we’ve spent the day in the velodrome at the Paralympics. The sporting performances were brilliant. We’re going back on Wednesday for the swimming. I hope you guys are getting to see some of it in the US.

    • Hey there, I have been following Rhys’s blog and am excited at the progress he is making. As you mentioned in your last post all the little things that are different are amazing and really add up. With respect to the skepticism, I faced the same skepticism here from my doctors. At the end of the day I did my own research and decided to move forward based on what I have learned. I do think we need more information about it though; which is why I am trying to remain diligent about updating the blog.

      The Paralympic coverage in the US is dismal. Had I planned ahead I could have used this as a good excuse to visit London (I love it there).

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  3. Hi frantz,

    I am 36 and I have spastic diplegia and I am having surgery with Dr park in June. Thanks for your posts! When you said, your legs felt like overcooked pasta after surgery do you mean they were really weak? Also, did you have pain when you got up to walk for the first time after surgery? Also were you able to get into your house with just the walker when you got home? I worry that someone will have to carry me in the house…like when I had surgery as a kid.

    Thanks,

    Colleen

    • Hi Colleen,

      My legs were weak but not so weak that I was unable to walk (with a walker). What I was trying to convey with that description is that my legs felt looser than they ever have. When I got up to walk the first time after surgery the most pain I experienced was from the process of getting out of bed (rolling over and sitting up was uncomfortable). But once I was up everything was OK.

      When I got home I was able to get up the stairs (using a railing) OK. Part of the PT in the hospital is having you go up stairs to ensure you’re able to do that.

      Goodluck with the surgery!

      • Thanks frantz. You have made me feel better- just was worried that I will be so weak that I won’t be able to stand …pt says I am pretty strong right now. I have railing on my stairs so happy that hospital pt’s practice that!

        Thanks!

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