Selective Dorsal Rhizotomy

The fancy title of this blog post is the name of a surgical procedure we’re considering for Caleb. Caleb has spastic diplegia cerebral palsy which means that his lower half is constantly in a state of contraction which makes his leg muscles feel tight. Caleb sustained a brain injury, known as periventricular leukomalacia (PVL), sometime before, during or shortly after birth. This injury isn’t progressive so it won’t get worse over time, but that part of the brain is essentially sending the wrong signals to Caleb’s lower half.

This surgery would permanently eliminate Caleb’s spasticity (muscle tightness) issues, which is what is holding him back from being able to stand and walk independently. The truth of the matter is, Caleb’s spasticity is manageable now through stretching and physical therapy, but it’ll never go away and will likely get worse. It’s not uncommon for adults in their 30s and 40s with cerebral palsy to experience premature aging after decades of additional stress and strain this disorder puts on their bodies. There are other more conservative treatment plans like giving oral medication like baclofen (a muscle relaxant) or Botox injections into the affected muscles but neither of these is a permanent solution to his spasticity. As Caleb grows, his bones will grow faster than his muscles, which will likely result in a need for him to have orthopedic surgeries where the surgeon lengthens the hamstring, heel cord, etc. If Caleb were to have the SDR surgery at an early age, it might eliminate the need for these orthopedic surgeries in the future. At least that’s the hope.

Selective Dorsal Rhizotomy (SDR) works like this: At the time of the operation, the neurosurgeon divides each of the spinal nerve roots into 3-5 rootlets and stimulates each rootlet electrically. By examining responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages to the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.

In 2013, SDR was performed at St. Louis Children’s Hospital 237 times and patients came from the US and twenty-seven other countries to have the surgery. This surgery is performed elsewhere in the US and abroad, but the team at St. Louis have performed far more surgeries than any other hospital. There are a plethora of YouTube videos chronicling the success that families have seen after they’ve had SDR. We’ve also met a local family whose daughter underwent the procedure at age 2.5 and has seen great results.

The first step in this journey is to find out if Caleb is a candidate for the surgery. We will be traveling to St. Louis this Sunday in anticipation for his appointment on Monday. We are optimistic that he’ll be a good candidate and are anxious to hear Dr. Park’s prognosis as to what he anticipates Caleb will be able to do in the future if he gets this surgery. This is a major surgery and Shane and I still have lots of questions for Dr. Park before we make our decision. The surgery itself is only a small part of the years that he’ll spend in physical therapy to gain strength and learn how to walk, jump, run, etc. It’s recommended that Caleb undergo 4-5 physical therapy sessions a week post-op for about 6 months. This is a huge undertaking considering we’ll be welcoming a new family member in a few short weeks, but we’re ready for the challenge because Caleb deserves every opportunity to reach his fullest potential and I know he’s destined for amazing things…

So please keep us in your thoughts as we start this journey!

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

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8 comments on “Selective Dorsal Rhizotomy
  1. Gisele says:

    You may think your children are gifts to you, but I think your children have been given the best gift: unbelievably fantastic parents!

    Best wishes as you explore this option. I enjoyed reading the science behind this procedure.

  2. Pat says:

    I concur…you are fantastic parents. I know you and Shane will do what is best for Caleb and the rest of your growing family. Love the name Mac by the way! And love the origin. Will be thinking good thoughts for you all.

  3. Marl says:

    Thoughts and prayers go out to you as you all
    undergo this journey!!

  4. SueLynn says:

    Praying for you and Caleb!

  5. Sharon says:

    You are fantastic parents, and I’m sure you’ve look @ everything over and over a zillion times. You’re on the right track, you will be in my thoughts and prayers. Anxious to hear more.

  6. angie says:

    Sending prayers, and hoping Caleb will be a great canidate if you and Shane so choose this procedure for him. You are great parents!! Keep the faith. Angie

  7. […] Part One of this story can be read HERE. […]

  8. Louise Beaulieu says:

    This little man is lucky to have parents like YOU!!! I support your decision 100%…we also had to make decisions concerning our daughter and we are very happy with the results….best wishes!!!

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