A parent's view: the story of Molly
"My daughter Molly has always been very sporty and very active. She is always on the go, the rougher the sport the better – the type who plays contact rugby with all the boys and never complains when she is squashed at the bottom of the pile! Pain was never an option; she just carried on".
Our experience with Complex Regional Pain Syndrome (CRPS) started in 2011 when Molly was nine and she hurt her left foot at school. It can’t have been too bad at the time as she stayed at school and hobbled around for the rest of the day, even going to afternoon cricket club and then onto a local cricket club session. When she was still hobbling a couple of days later we took her to A&E for an X-ray - as suspected nothing was broken and she was told to use her foot as much as she could. So Molly persevered with her sport, typically taking two steps, hopping for a couple, and so on. Six weeks later she was still limping and was referred for an MRI scan which she eventually had three months later. The scan showed nothing and by now we were six months down the line and Molly was not improving. I remember feeling quite frustrated that there was no sense of urgency with Molly’s case; even my request for physiotherapy was dismissed.
Over the winter the problem came and went and Molly carried on with sport as before, often having to come off during football or rugby matches when she would suddenly feel pain again in her foot.
Nearly a year later Molly’s foot went like a claw and she was unable to put it to the ground. I went back to the GP, who suggested a specialist. I offered to pay to speed the process up as I was not prepared to wait another six months. Within several weeks her leg seemed to have contracted and was stuck in a strange position. We saw several specialists, and Molly had several more MRI scans, including her brain and her back, and a nerve conduction study, but every time the same conclusion was met. Typically comments such as: “there is nothing wrong”; “in thirty years I’ve never seen anything like this”; “in nineteen years I’ve never come across anything like this and don’t think there is anybody in this hospital that can help you. I’m not sure where you should go”. Molly was by this time having physiotherapy which involved her leg being forced straight and then braced which took two men half an hour! This caused her so much pain and distress; it was just heart breaking to watch.
It felt like nobody was taking it seriously, like they all thought that Molly was making it up. I even made a point of visiting another doctor on my own as there were things I wanted to discuss that I couldn’t in front of Molly. In other appointments I often felt that things were said in front of her that shouldn’t have been. I felt like I was coming up against a brick wall. I had battles with my best friend, my mother and my husband. This uphill struggle was very, very hard and very, very lonely.
By chance I spoke to someone about Molly’s condition and with no prompting she said “that is CRPS, you need to get her to Bath”. By coincidence her sister, a doctor, had worked at Bath Centre for Pain and had been involved in research for CRPS. At last I knew where I could get help for Molly.
Meanwhile I found out the name of the specialist at Bath and paid privately to see her. She confirmed that Molly needed an urgent referral to Bath and three weeks later there we were for a four day residential rehabilitation admission.
This was hard work for both Molly and myself. I was emotionally exhausted from the battle I had experienced in getting help from the right place. Although I was relieved that finally somebody understood, I was furious as I felt i had not been taken seriously enough before. This had left me feeling terrified that this latest chance to help Molly was not going to work.
By day four at Bath Molly had put the side of her foot on a surface for the first time in six months. We were given exercises to go away with which we worked really hard at. Luckily Molly is very determined; she completed her eight week plan in just three weeks. At her check up Molly could weight bear and walk a few steps without crutches. They spoke about the anxiety of doing anything without crutches etc., as these had been Molly’s safety net for so long but Molly was resolute. On the way home we stopped at a shop to pick up a present for a party. I parked opposite the shop and as we were getting out of the car Molly asked for her crutches as this had been the norm for so long. I simply said “do you need them?” she tentatively said “no”. So this was Molly’s first walk without crutches in over six months, not an easy task but she made it across the road with her arms doing something very strange as they were so used to having crutches to propel her forwards. We both laughed about how she looked and people stared, but we didn’t care, she was walking. This was a real breakthrough; from that moment Molly never used her crutches again. There were bigger surprises in store – not long after we got home I looked out the kitchen window to see Molly cycling by with her thumb up and a huge smile on her face!
Since then we haven’t looked back. Molly started the new school term in September 2012 feeling very positive; just six months later she had been on a skiing holiday, was playing tennis for the U14 at the local tennis club, and was captain of the local U11 cricket team and playing for the U13 team.
Although we do have the occasional minor set back, we know how to deal with this with confidence. I can honestly say that without our experience at the Bath Centre for Pain Services we would not be where we are today. What we have learnt there has left me with an immense feeling of relief and given Molly a brighter future.