Before And After
An Overview Snapshot of My Journey and Why I chose SDR
An Overview Snapshot of My Journey and Why I chose SDR
July 6, 2024
I was born with (right side affected) hemiplegic cerebral palsy. (GMFC level 1). I could talk in full sentences by the age of nine months but wouldn’t learn to walk until I was two years old. I had mostly a regular childhood. My gait was abnormal and people could be cruel but for the most part my life was blessed.
At age 21 I would have traditional heel cord lengthening surgery and Shriner’s hospital would send me on my way. One of the strange things about being an adult with a childhood neurological disorder is how alone you feel in determining the right healthcare. Until recently, life was as if you had been released from swimming lessons because you turned 18, even though you still can’t swim — and now you’re expected to cross the ocean alone.
I would attempt to navigate this ocean independently for about 20 years. At the age of 40, I would experience pain in my non affected ankle. The pain would increase until I needed to seek help.
A friend would introduce me to Dr. Matthew Dobbs, Paley Orthopedic Institute’s leading cerebral palsy expert. Thinking it would be inappropriate for me to have a pediatric doctor, I would ask for a recommendation, He would recommend himself.
On July 6th, 2024 we would meet Dr. Dobbs for the first time. After some discussion, we realized my body had been failing me for a while. I had stopped being able to get up and down off the floor. I was taking breaks during tasks, needing to sit and rest. I’d been in pain but pushing through because that’s what I had always done.
September 17, 2024
The night before I met with Dr. Dobbs, the nurse emailed me to ask if I had previously undergone SDR. You can imagine my fright when, having never heard (let alone undergone) this procedure, I was being asked about it. I called my mom and told her, “That kind of procedure is something only God should mess with. There was no way I am going to allow the doctor to play God.” So, it should be no surprise, when towards the end of that first doctor’s visit, Dr. Dobbs would explain that if I didn’t have SDR, it was very likely that I'd be in a wheelchair by 50 years old and could very well be dead by 60 years old.
We would learn that the spasticity in my body if not treated would lead to atrophy of muscles, stiffness and could eventually lead to organ failure (Not on its own but rather as painful domino effects).
We met with Dr. Asadi (the neurosurgeon) to discuss the procedure. He was upfront, honest and patient. The visit took 90 minutes as he answered all of my questions. We left with a promise to talk again soon. But, the only reason I was even considering it was Dr. Asadi's honesty and confidence that I could benefit. One of the questions he asked during the visit was, "What's the last difficult experience you struggled to do that now seems impossible?" My answer, climbing a volcano. He told me that wasn't out of the realm of posibility anymore. I honestly didn't believe him.
There was a lot of fear behind my reluctance as well. The typical overall worry about this surgery’s process, the fact that I was considered obese, over the typical childhood age and even outside the age range of adults who have the procedure done. Was I really a good candidate? I would also be Dr. Asadi’s oldest patient and couldn’t really find information from other patients of his except for two young children who could not give me any personal feedback. On top of all that, most comments from adults in social media groups mentioned lots of nerve pain. I wasn't ready to swap the pain I knew and pushed through for the unknown pain on the horizon.
So, in the midst of all that doubt and worry, there was lots of prayer as I attempted to make my decision. And then a friend told me something I will never forget. “Sarah, I know you're scared. But, God made surgeons too”. She was right. I had researched far and wide. Despite the lack of adult patients for me to talk to, I found the best surgeon and if I truly believed that God would provide, I'd have to deal with the choice no matter what trials came my way. It was then that my mind was made up. I would have to defend my decision to so many people as we waited for surgery. I can still give you many reasons why this was a risk. So, conversations with others were often discouraging. But, I had faith and peace. It would be the best decision. Because, on May 14th, 2025, Dr. Kaveh Asadi would save my life. And I, would never be the same.
You can find a list of my final researched reasons for selecting Dr. Kaveh Asadi, here.
Day Zero:
The Day Everything Changed
May 14, 2025
“We can still change our minds. I can cancel surgery and we can just go back home. Nothing has to change.”
I say this to mom as I’m lying in bed this morning, filled with fear.
She says, “lie still and listen….
But now, this is what the Lord says— he who created you, Jacob, he who formed you, Israel: “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior.” (Isaiah 43:1-3)
I took a deep breath and immediately got out of bed.
We signed in and then I was taken back. I was told to dress in my surgical gown and everyone on the surgerical team came by for a visit. Dr Asadi couldn’t find my bed, so when he found me, he said, “There’s my girl”. He asked what I’d like to listen to during surgery and I was so stressed about what was coming, I couldn’t give an answer. I needn’t have worried at all.
Hours later I’d wake to Dr. Aasdi handing me a popsicle letting me know he was happy with the outcome of the procedure.. I had a previous notion that I’d sleep on and off the next 24 hours as every other adult I had talked to had to lay flat for three days. But, that wasn’t needed. So, while I was drowsy and the pain meds greatly helped, I’d be awake for most of the next 24 hours. I’d stand and walk to the bathroom 2 hrs after waking from surgery. It was sketchy at best, but, I’d learn soon enough there were things you don’t understand until you live them.
May - October
Proprioception: the awareness of the position and movement of the body. This word had been thrown around before surgery. But, for someone who had walked for 41 years with some idea of my body's location in space, therapists would label me as “stubborn” and “easily sidetracked”. While I am stubborn, I am not easily side tracked. I just didn't know that I didn't know.
I’’d go on to almost fall during that first night. The next day the physical therapist would remind me to repeatedly look down, learn where my body was in space and then attempt steps.
Day 1:
Even though I spent that first night in ICU, I didn't sleep much. I was glad mom was back at 6am to help me get to the bathroom. We were almost set to go "home" The doctor had been by and all was well. Dr. Asadi was happy with my progress. I was headed to PT. The problem was my heart rate dropped and they were worried about my discharge. Dr. Asadi to the rescue. He could tell I could be set me free and I'd be fine. So, he did just that. I'd go on to have my first PT session. Katie would tell me I had no idea where my foot was, and she was right. The struggle would be real for days to come.
After the First Week (written by mom)
One week since surgery. Productive day at PT. Saw our favorite surgeon and he was impressed with how well she’s doing. The PT today was the same one as day two from last week and she said if she didn’t know better, she wouldn’t believe Sarah is the same person.
Would covet your prayers for the best outcome with the insurance issues. We’ve been told these 1st few weeks of PT are the most important and we want her to get the care she needs!
The Next Two and a Half Weeks
I would spend the next two and a half weeks in physical therapy at Paley. Every day without fail. Monday through Friday for two hours (one hour through insurance, the other $300 private pay). We would also do many hours at the hotel to stay as sharp as I could be.
While Dr. Asadi warned it may take me a month to learn to walk independently, I ditched the walker in a week. I’d use a cane for a weekend and then, it was back to independence with my AFOs. But, the work wasn’t done.
I would spend the rest of my time at Paley learning how to get stronger, how to use the vibration plate and how to use the ESTIM.
Headed Home
I thought I’d be ready to be home, but I wasn’t. I gained the ability to drive at week 3 which meant I had independence to drive myself to PT and wherever I needed to go. At physical therapy we had worked on getting in and out of the shower, so I didn't even need help for that. All this independence meant that mom could return to her home. She only came over a few days a week for stretching and to help with exercises I couldn’t do alone. It was some of the most lonely times I’ve ever lived because at the end of the day, I was the one who had to choose to push through pain and hours of PT. While people would call and text, send me encouraging voice messages, I was the one who decided it was worth it. And it was. But, this is the part that I think is the hardest about having SDR as an adult. You have no choice but to do the work or the results won't come.
Summer
I spent my summer going to (in clinic) PT three times a week. I would then come home and do more PT exercises in the pool, ESTIM to stimulate nerves and muscle growth, and the vibration plate. I also pushed myself to walk 10-12,000 steps a day. It was a long summer.
School Starts
School started in August. I had to try to balance PT and work load. It was not easy.
October
Dr. Williams (Pediatric Foot and Ankle Specialist) would explain why my body needed another surgery. This time it would be Gastroc PERCs. Recovery in a way would start over in November. But, I constantly remind myself that life after SDR is a marathon, not a sprint.
You can read a more indepth version of my journey here.