Adulthood with Cerebral Palsy: Discovering SDR at 32

When I entered my 30’s I thought I had reached a level of maturity and wisdom that far surpassed that of my earlier years. I felt educated, informed and more confident in who I am than ever before. No sooner than I felt this wave of wisdom and self awareness did I learn something that would rock my world to its core. (Not in an earthquake kind of way…much more like an all night dance party.) All it took was a rough day, a loving Mom and a late night Google search that led me to an article on the Internet that would change my life…permanently.

See, one day earlier I had a meltdown. I don’t remember what happened, or if anything in particular happened at all. But, I do remember exactly how I felt because it is a feeling that had plagued me many times before. I was tired. As a mom of 3 young children, that is to be expected. What brought me to the point of hysteria was the unexpected. At 32 I didn’t expect to be in so much pain. My body ached in a way that left me panicked. I wondered if this is what my life would look like but deep down I knew the truth. I was only going to get worse. I knew what it was. I knew why it was. What I didn’t know was how or if I could change it.

At one year old I was diagnosed with cerebral palsy (CP). The type of CP I have is spastic diplegia, and only my legs are affected. Cerebral palsy causes intense muscle stiffness due to spasticity. For me, this spasticity affects my balance and the way I walk. My movements are awkward, sometimes difficult and I walk with a pronounced limp. Because of muscle weakness and the energy required to move, I tire very easily.

Throughout my life my parents and I were told that cerebral palsy is not progressive. However, I can attest to the fact that this isn’t true. As a child I ran through the yard with my brother and sister. As an adolescent I remember getting into a fight with my girlfriends and walking a few blocks by myself, unaided, to get home. I knew it would be hard but I was stubborn and I was sure I could do it.

As the years went on, whenever someone was kind enough to offer me a hand, my stock answer became, “I think I’ve got it.” The truth was, I wasn’t so sure anymore. My 20’s felt like a slow decline in my mobility. Soon having a hand to hold once in a while wasn’t enough. I needed a cane to navigate the world outside the house.

I hoped exercise would help me regain my strength and independence but was met with pain that far outlasted my workout sessions. By the time I was 30, I would often lay my head down at night and cry in pain and complete exhaustion. From the moment my feet hit the floor in the morning I am stiff, and hurting. The weight of the weakness in my legs and the rubber band like tightness are a harsh reminder of what is. Those first few steps are brutal until I find the momentum to carry me throughout my day. I thought this wasn’t supposed to happen? But it was, and it is.

So, on one rainy September morning, I had a meltdown. I couldn’t keep in the pain, fear and frustration any longer and I let it all out. I vented to my mother and she held me as I wept. Just getting out all of those emotions was cathartic. I said my piece. The day went on and it was back to taking care of my babies, just as my mom had taken care of me.

The next day when I saw my mother, she was beaming. She sat me down and with a stack of papers in her hand; she told me she found answers. She proceeded to hand me an article titled, “SDR: Life-Changing Surgery for Cerebral Palsy.” The author, Nicole Luongo described a life I knew all too well; a life with cerebral palsy. Although having CP can mean very different things for those affected, in that moment, Nicole’s story spoke to me. As I read on I was enthralled to learn that at age 40, Nicole underwent surgery to remove the spasticity from her legs…permanently.

This surgery is called selective dorsal rhizotomy or SDR. SDR is a surgical procedure in which spasticity is addressed at the neuromuscular root. During the procedure, rootlets within the spine are tested and those that are “misfiring” and causing spasticity within certain muscles are cut. The outcome is permanent and if all goes well there is the potential for spasticity to be completely eliminated.

It was as if I was floating outside my body. I read and was overjoyed with the possibility of this becoming my reality. Could this be the key to keeping me mobile and active? Could this help relieve some of the painful stiffness that I have always known? Why wasn’t I ever told about this? Is this even real? It was almost too good to be true. By the end of the day I had reached out to the author of that article and she assured me just as she stated in her article, SDR changes lives for people with CP. She answered my many questions and directed me to information on Dr. TS Park and the St. Louis Children’s Hospital.

By the next day I had read and reread all about Dr. Park, SDR and all it entails. I learned that Dr. Park is one of the the only neurosurgeons in the United States that is willing and experienced in performing SDR on adults my age. As such, he has strict requirements that must be met for adults to be considered for this procedure. It is a 3-step process, the first of which initial, basic criteria must be met. Subsequently, a physical therapist must work with you to complete documentation for step-2, which must be sent to Dr. Park along with x-rays and more detailed personal information. Lastly, either a video or in person physical assessment must be completed before it can be determined as to whether or not you are a candidate for the surgery.

Step one was a breeze. Step two was extremely nerve wracking. At the urging of my husband, we agreed that due to the nature of the surgery and to truly feel comfortable with the outcome, whether it was a yes or no, we needed to go to St. Louis and meet Dr. Park in person.

In March, six months after learning about SDR, my husband and I flew from NY to St. Louis for my consultation with Dr. Park. Being in his office was my equivalent to waiting backstage to meet NSYNC circa 1998. I was so anxious to meet the man who dedicated his entire life to helping people like me with CP. Unlike the many neurosurgeons who perform SDR on young children, Dr. Park is rare as he saw the need for care within the forgotten adult CP community. That makes him a hero in my book! Whether he approved me for SDR or not, I was truly awestruck to have the opportunity to meet him. I knew whole-heartedly that whatever Dr. Park’s decision, it would be the right one for me.

As it turned out, thanks to God, my Mom, author Nicole Luongo, and the best husband on Earth, I was approved for SDR surgery! Dr. Park said the surgery would help me “tremendously” as far as my ease of movement, transitional movement, ability to be active and exercise, and overall comfort. Most importantly, I would in essence be given new legs. Dr. Park confirmed what I feared for years. Without SDR I would eventually loose my ability to walk. Thanks to this incredible opportunity, that is a fear I can now put to rest.

I know I will have to work harder than I ever have to retrain my body to walk. I will be given access to muscles I’ve never used before, as the spasticity that restricted them will be eliminated. The post-op protocol for SDR is just as, if not more important than the surgery itself. Dr. Park will give me the tools to make the most out of this body of mine. Then, it’s all on me to keep myself strong, healthy and active. I am so incredibly grateful for this opportunity and ready to work and earn my new legs.

I have such comfort in knowing that the anguish of the unknown is no more. I am stepping off that downhill slope and starting anew on a much more promising path. It may not be easy, but i’m strong, capable and ready. In the summer of 2017 I will undergo life changing SDR surgery. All it took to get me to get here was 32 years, a rough day, a loving Mom and a late night Google search.

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