1.26.18: New Year, New Legs
It’s here. It’s official. It’s happening. On January 26th I will have Selective Dorsal Rhizotomy surgery with the world famous Dr. Park at St. Louis Children’s Hospital. Dr. Park saw a need in the under-served adult CP community, and gives adults with Spastic CP the opportunity to have a potentially life-changing operation. I never knew it was possible to feel so many conflicting emotions at once. All at once I feel terror and pure joy. I feel both doubt and absolute certainty. I have faith and I have fear. This is something I have researched endlessly, prayed for religiously, and tirelessly advocated for. Despite all the pre-surgery jitters, I know that this is the right thing for me at exactly the right time. With such a big announcement, I figured my family and friends may have questions, so I put together a short FAQ. Please read and share, and feel free to comment any additional questions!
What is Selective Dorsal Rhizotomy?
Science isn’t my thing, but here goes. Think of the brain as a light switch that allows the muscles to contract and relax. . It receives messages from the muscles via the spinal cord. In people with CP, damaged communication between the brain and muscles causes the muscles to constantly contract causing spasticity. The result is painful muscle rigidity which greatly limits movement. During SDR, Dr. Park will section off nerves in the spinal cord and assess them with an electrical stimulator. The nerve that come back positive for spasticity will then be destroyed. The goal is to leave me with normal muscle tone, and essentially new legs.
Whoa! Seems drastic. Have you tried Baclofen/Botox/Acupuncture/Massage/Eating Gluten Free/ Stretching/ Praying???
With the exception of eating gluten free (because god I love bread) I have tried EVERYTHING out there with very limited, temporary success. I would feel the relief of these treatments for a very short period of time, only to have spasticity return. Baclofen and botox both came with potentially dangerous side effects. Holistic measures, like acupuncture, stretching, and massage are things I will continue doing to improve my results after surgery. SDR is the only solution that can provide permanent relief from spasticity- and I’m ready to get rid of this for good!
What are your goals after surgery?
My main, broad goal after surgery is preservation of my health and mobility. It’s my hope that after surgery, I will have much less stress on my body, allowing me to do more for longer periods of time. Though I think it would be cool to run and jump, what I’m really after is a pain free life. I think realistic expectations are everything, and they will probably grow and change as my recovery progresses.
What is the recovery like?
Unlike the orthopedic surgeries I’ve had in the past, this time I won’t be in bed for a two- month long Netflix binge. This is an active recovery, and my results will be dependent on how hard I am willing after surgery. The therapy requirements are intense, but as an adult, I feel ready and willing to commit to a rigorous PT regimen in hopes of the best results.
I have CP. Am I a candidate for SDR?
I encourage everyone with spastic CP to explore their candidacy by reviewing the criteria and submitting the patient information form found here.
It is my goal to be as candid as possible through this entire progress in hopes of helping others who may be interested in learning more about the surgery. This is an opportunity of a lifetime, and I’m ready to dive in.
New Year, New Legs.