How Surgery Improved my Limb Difference
Lois Corrigan from California sent us her personal account of living with lower limb impairment and how medical intervention has improved her life.
I'm a 56 year old woman living in Southern California (think Disneyland) that was born with Fibular Hemimelia (FH) and Congenital Femoral Deficiency (CFD/PFFD). My leg length discrepancy (LLD) surgery corrections started three years ago.
My parents were from the USA and were missionaries in Zimbabwe, Africa when my mum was pregnant with me. She took thalidomide, a drug that is now known to cause birth defects. Many babies were born without arms: I was born with the remnant of a fibula, short tibia and short femur. My FH foot is small with two bones fused together, my ankle had a golf size ball on it instead of the normal ankle and I walked on the outside of my foot. My knee grew into a painful knock-knee position.
As a baby, my foot was put in a cast to correct what today might be called a club foot. My parents moved back to the USA when I was four years old, and I spent my childhood being watched by orthopaedic doctors who measured my LLD, which became a larger discrepancy as I grew up. I wore a brace on my leg, similar to ankle foot orthosis (AFO). I requested to start wearing a 4-inch built up shoe in middle school, which continued throughout adulthood. I was told as a child that leg lengthening was experimental and if we tried it the result might be so bad I would never walk. So my parents decided not to take the chance. They were told they could stop the growth on my good leg, but they didn't do that. I was glad they didn't since I am only 5'1" - I can barely reach the gas pedal on a car, so I don't need to be any shorter.
As an adult I worked as a secretary at Los Angles County Office of Education, in California. I chose a desk job as I was unable to stand for any length of time. I didn't know of any surgeons who could correct my birth defect, so I didn't pursue it. The only people I heard were doing lengthening were halfway across the United States from me, and I didn't have any money to go outside my geographic area for treatment, especially since I assumed it might still be experimental.
My spine was so painful I couldn't sit at a desk and work an eight hour day, so three years ago I had spinal fusion for Scoliosis. My surgeon encouraged me to pursue leg lengthening so my hip line would be even and hopefully I wouldn't need additional spinal fusion.
As I grew older, my knee started growing into a painful valgus position. I was walking with a knee growing out one way, and I balanced myself with my ankle turning my foot in. A young orthopaedic surgeon said he had never seen a case like mine after reviewing my X-rays, and didn't know any orthopaedic surgeon who could help me. Walking became so painful I knew if I chose to do nothing, within two years I would end up in a wheelchair. On a Saturday afternoon I saw an amazing video of a young man who had his leg lengthened with an internal lengthening rod. It was a patient of Dr. Rozbruch, HSS in New York. I knew immediately it was the 'cure' I had been waiting for all my life. Around this same time, my primary care physician X-rayed my ankle at my request, to see why it was so painful. He shook his head at me and said he had never seen an ankle with bones fused together like mine and didn't know anyone who could help me. It finally prompted me to do an internet search to see if any new surgical corrections were available. The internet search led me to contact Dr. Paley in Florida, Dr. Herzenberg in MD, USA, and Ellipse Technology, the company that created the internal bone lengthening rods.
From reading Dr. Paley's website I realised that the correct diagnosis for my birth defect was Fibular Hemimelia and CFD. I was 53 when my birth defect was finally diagnosed correctly. I realised that I couldn't simply have my bones lengthened, I also needed knee correction and ankle/foot correction. I contacted Dr. Paley and Dr. Herzenberg at the International Center for Limb Lengthening (RIAO) in Maryland. Both surgeons said they had to see me in person to assess my case.
Dr. Herzenberg gave me the name of a local surgeon that specialised in limb lengthening, so I met with Dr. Scott Nelson at Loma Linda Medical Center, in Southern California. Dr. Nelson's first diagnosis for me was amputation - I told him I was not willing to do that, and asked what other options he could recommend. He wrote down a summary of the surgeries I would need. I reviewed the current plan for spinal surgery to correct Scoliosis with him, and he agreed it was needed. I asked my spine surgeon if he thought I would handle bone lengthening well, and he said yes, so I continued my consultations for leg deformity corrections. He assured me I would be healed in time to fly across the US to meet with Dr. Paley. Four months after the spinal fusion surgery, I flew across to Florida to meet with Dr. Paley. He said that if he aligned the whole right side of my body correctly, it would reduce my pain. To him age was not a deterrent to having leg lengthening done, despite that it is usually done on much younger patients, mostly children.
I considered what both surgeons said was needed and decided that most of their diagnoses was similar. I decided to work with Dr. Nelson, since the Loma Linda Medical Center was only an hour away from me. Dr. Nelson usually works with paediatric orthopaedic cases but he agreed to work with me, since my case was within his area of speciality (limb deformity correction). He recommended total knee replacement as the first step. That procedure, which straightened out my bent knee, added an inch to my short leg - a good start to lengthening my short leg.
Then Dr. Nelson performed a combined surgery of ankle fusion and inserted a PRECISE rod into my tibia. While the ankle fusion healed, we lengthened my tibia by 5cm using the magnetic lengthening rod. I had an ankle fusion infection that necessitated me spending a week in the hospital with IV antibiotics. In the middle of the week, Dr. Nelson performed surgical debridement. Once the infection was cleared, my ankle healed and the tibia bone lengthened. After the distraction phase was complete, I was cleared to walk with partial weight bearing. Since my FH leg was still about 3 inches short, that put strain on my other, longer leg. My knee on that leg wasn't in good shape and walking on it was painful, so Dr. Nelson agreed we could add the second PRECISE rod into my femur, which lengthened it by 5 cm. Once the lengthening was complete, the cast was removed. We lengthened my tibia by 5cm and femur by 5cm - 10cm total. I had to relearn how to walk again - the third time in three years. So far I've gone from a walker to a cane, and I'm still in the last stage of learning to walk again.
I currently have an inch left to totally correct the LLD on my short leg. My orthotics provider adds an inch to my shoes and the difference is hardly noticeable. Dr. Nelson and I have talked about reactivating the lengthening rod and lengthening another inch, but currently I'm working on becoming steady as I walk and making sure all the previous surgeries have healed completely.
I can finally put my FH foot flat on the floor. I don't toe walk anymore. My ankle is fused so the pain from rubbing bones together is gone. Both legs look the same length, the difference is barely noticeable. The funny golf ball size lump on the right side of my FH ankle is gone and it looks almost like a normal ankle. My FH leg is straight and I walk much better, no more large 4-inch very noticeable built up shoe. I still have one foot smaller than the other so I still need to buy split size shoes, but my FH leg and foot functions much better after the surgeries.