A Passion for Design:
How Charlotte's journey with her leg became the catalyst for No Guts No Glory
I, Charlotte Robinson started No Guts No Glory in order to provide fashionable clothing for individuals with a Taylor Spatial Frame, and to share my story from a patients perspective. After living with a Taylor Spatial Frame on my leg for 13 months, I discovered how hard it is to fit clothes over the frame. Going through this process inspired me to create my own clothes. Having a frame on has its own challenges that one should not have to worry about the difficulty of clothes. That is why I have started my own clothing line that makes changing easy. Snap on underwear makes putting on and taking off undies effortless.
From the beginning:
I was born with vascular tumors that damaged a good portion of my right tibia. These vascular anomalies were discovered when I was three years old after I took a fall, that caused a fracture. The scans revealed that I had a hole the size of a golfball at the top, and the remaining half of my bone was honeycombed. At that point the vascular activity was quiet and no more damage was being done. However, when I was around 8 years old I had a growth spurt and the vascular tumors flared up again and ate through my growth plate. Over the next two years my leg began to turn in different directions because of the damage to the growth plate. My tibia rotated 50 degrees out and my femur turned 30 degrees in. Walking became problematic, and by the time I was 10 I couldn't balance myself any longer. I underwent a surgery where they broke and reset everything in my right leg. They had to put in a lot of metal hardware into my leg. In my tibia they put in a metal rod and a metal plate, and in my femur they put in a metal plate. The surgery took about 7 hours and it took me months to recover.
About 3 months later, my surgeon put metal plates over the growth plates in my left knee in an effort to keep my 2 legs similar in length. It took me 9 months until I could walk with lots of physical therapy 3 times a week. However a few weeks later in September I was in an accident and my right ankle was crushed in. So back to the operating room I went and I wasn’t back on my feet again until January of the following year.
How I lived with a 2 1/2 inch leg discrepancy:
During the next 2 years I had another growth spurt, but this time I only grew on the left side. Initially the difference was minor but it developed into a 2 and a half inch leg discrepancy. Then other problems including back pain started to develop and walking became difficult. We built up my right shoes until it looked like a platform shoe. The difference in length kept causing problems and I had also fractured the bone again and this time the metal rod got pushed back behind my knee. So I asked my doctor, Dr. Feldman about leg lengthening. He hesitated because my situation was a little different than the majority of people undergoing a Taylor Spatial Frame (TSF). My bone was frail and at a much greater risk of breaking. He was concerned about the risks of lengthening the bone and told me there was nothing he could do. Hearing those words crushed both me and my parents. Up to this point in my life there was always a way of fixing my leg, but knowing there was nothing to be done was heartbreaking. After going through so much in my life I wasn’t going to give up at that moment. Instead, I exercised my leg everyday and worked to make it stronger. At age 13 I saw Dr. Feldman again and his response was different. He had seen how well my bone mended after every break and I had pretty much finished growing. So Dr. Feldman decided to take the risk and do the surgery.
Surgically Attaching the Taylor Spatial Frame:
That June after my 8th grade graduation I was scheduled to have the surgery. I will never forget the day beforehand. It was Father's day and we spent the whole day doing what I love most, playing tennis. I played family doubles for 3 hours with a 2.5 inch heel on my right leg. In my mind this was my last day of freedom. I knew I would be spending my days in bed and getting around on crutches so I seized the day and made the most out of it. There were a lot of risks going into this surgery and I was told from the beginning that there was a chance this wasn't going to work, but I never let this thought cross my mind. Instead I had the attitude that this was going to work because, as my grandfather said to me "80% of the success of a surgery is the patient. Attitude is everything".
So finally, on June 20, 2011 I went in for surgery to have the Taylor Spatial Frame put on my leg. It was a complicated surgery because my surgeon had to remove all existing hardware in my leg, including the metal rod that had been twisted backwards in the previous years. Dr. Feldman persisted and after 7 long hours he was successful in attaching the frame! They were able to get out all the hardware, but then the big question became would my bone be strong enough to hold the weight of the frame, or would it shatter.
I spent close to a week in the hospital and it wasn't until I arrived home that I actually began lengthening my leg. My mom did the turning of the struts while I tried to distract myself. The only thing I accomplished the first day home was a shower. The Summer of my surgery was mostly spent sleeping. I slept till 12 almost every single day in the Summer because my body needed it, and all the medications added to my fatigue.
My 13 Months with the Frame:
I had to carry the Taylor Spatial Frame on my leg for 13 months exactly. From June 20, 2011 - July 20, 2012. The frame felt a little big at first but after carrying it around for a while it grew to become apart of me. (only 4 pounds heavier). For a whole entire year I carried this weight everywhere I went. It can be tough at times with everyone always staring at your frame but what I came to learn is that people are intrigued by the frame. I had more guys coming up to me and asking me all about it because they thought it was "so cool". I get to tell my story to many people and in return hear theirs. I quickly learned that everyone has a story to tell. I met many interesting individuals who had faced all kinds of challenges in the past but you would never know it. I met an outstanding baker with only three fingers, a woman who had a tree fall on her in a storm and many others. Everywhere I went I heard incredible stories, and every person gave me the same advice which was to not give up because it gets easier and life goes on. And just maybe you will be sharing war wounds with the 56th U.S. Secretary of State Henry Kissinger, who pulled up his pant leg to show me his leg after seeing my frame! There also happens to be many perks to having this frame on. I got to cut all the lines not only at the airport, but at Universal Studios theme park. The frame was actually pretty amazing because in the end I got my 2 and a half inches of growth. That in itself is a miracle!
Growing bone in my leg was definitely the slowest part in my case. My leg was lengthened 2 and a half inches for a while before the frame came off. The problem was the gap that was created from lengthening. My leg wasn't filling in with bone as quickly as we all had hoped. Along the way I used an ultrasound bone healing system which helped to stimulate bone growth, but that wasn't enough. I had to have a stem cell transplant where red bone marrow stem cells were taken from the iliac crest (bottom of my spine) and layered into the gap. Then it became a waiting game. I was told going into this surgery that tumored bone can eat up this material, so it all came down to if my body would reject or accept the bone. It took 8 long weeks but slowly you could see the bone starting to consolidate, and slowly I was on the road to success.
The process felt slow at times and one of the worst parts for me was the physical therapy. I had to do a lot of physical therapy after every surgery. I have always hated Physical therapy because the idea of working out has never been too appealing to me, and the idea of working out with a frame on had zero appeal. After getting the okay from my doctor I was told to start weight bearing and slowly I was able to put more and more weight on my leg. I never got to the point of actually being able to walk without my crutches, but I lived my life as I would without the frame. I played tennis, went swimming and didn't let the frame hold me back.
Removal of the frame:
When I finally was ready to have the TSF removed, I had the choice to have it either taken off in the doctors office or the operating room. I opted to have it taken off while in the operating room so I wasn't conscious. The removal of the frame was very straightforward and for me at least, not too painful. The procedure only took about half an hour and when I woke up in the recovery room, I felt great. I didn't have to stay overnight and was sent home a few hours later. My leg was wrapped up in a cast and I was shocked how light it was. (4 pounds lighter to be exact)
I decided to make this website so others can learn a little about what to expect before surgery. Just like everyone else I had access to the internet and some of the photos of Taylor Spatial Frames and ilizarov frames but that did not help in calming my nerves before surgery. I was given very little information about what to expect and the people informing me about the operation were all doctors who clearly hadn't ever experienced a frame themselves. I hope that this website will help others to at least understand what to expect and give you a sense of what it is like from the perspective of a patient.