FAQ

Common Questions About My Experience With Selective Dorsal Rhizotomy for Spastic Diplegia Cerebral Palsy

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s