"asked her surgeon to amputate her whole foot because she couldn't cope with the pain"
I was born with Macrodactyly and Syndactyly of my right foot. In layman's terms, two of my toes were fused together and the front third of my foot was growing aggressively. By the age of 4 I could no longer fit into a shoe and had surgery to fuse one growth plate, partially amputate one toe and reduce the width of my foot. My mother tells me that I recovered from this procedure relatively quickly. By the age of 10, due to the excessive growth, further surgery was required. I had all the growth plates in the front third of my foot destroyed, two bones removed from my toes, the remaining bones pinned and further debulking of the width.
As well as post-operative pain and sensitivity to extreme temperatures, which is part of the condition, I developed Morton's neuromas as a result of the surgery. When I was 12, my surgeon, re-operated to bury the neuromas into muscles in my foot, in an attempt to reduce the pain. Unfortunately, the procedure exacerbated the condition and I was given the choice of a further operation to bury the neuromas in bone or use Gabapentin and Lidocaine patches indefinitely
At this stage I couldn't walk for more than 10 minutes without needing to take the weight off my foot and was only managing a few hours in school every day. I can only describe the pain as hot nails driving through my foot and this could strike randomly and last for hours. My skin was so sensitive, that even a light touch would feel like boiling water so neither shoes nor socks could be worn when the pain was at its peak.
At this point my surgeon told us she had heard of a new, totally non-invasive treatment, that was "worth a try". We travelled to Chelmsford burns unit and were seen by Mr Sood, a burns specialist who had been using external neuromodulation with success. I had 5 sessions, each lasting 5 minutes. At the end of these sessions, I was able to reduce my medication and was able to spend a whole day at school. Due to the travel times from Wales to Chelmsford, my mother hired a machine to use at home and over the following months, with a 5 minute session once a week, I was able to reduce the discomfort to the point where I could walk the mile to school, wear shoes all day and begin to socialise for longer periods. I was also able to stop all my medication. Two years on, I keep a Stimpod at home and use it probably once every three months for 5 minutes. You can’t really imagine what a difference this treatment has meant to me!
Comment from Liberty’s mother, Ruth
There was one point, in utter desperation, my daughter asked her surgeon to amputate her whole foot because she couldn't cope with the pain from her neuromas. Immediately prior to her treatment, she was spending only a couple of hours in school a day and had developed an eating disorder, which the GP believed to be a coping mechanism and reaction to the pain. She couldn't walk more than a short distance without being in agony. This is my daughter now, a 16 year old, confident, happy girl. She walks to school, her hobbies are reading and walking. Yesterday we walked 6 miles. She wants to become a professional harpist and is already performing with four orchestras and as a soloist, something she could never have achieved with her foot in pain because she could not use the pedals on her instrument. This is a smile that we didn't see for a long time. Your treatment has literally changed her life.
Cardiff August 2014