Firstly, I would like to thank CRPS UK for their continuing support through my journey with CRPS. The support from members and co-founders of CRPS UK has been amazing.
I wrote for the CRPS UK blog a while ago now about my struggle and battle with CRPS but in case you didn’t see it I will update you. In 2012 I had a very minor procedure to remove an ingrown toenail. First I had it done on my left foot, which went fine and then about a month later I had the same procedure done but on the right foot. It did not go well and I was later told that I had developed a condition called Complex Regional Pain Syndrome (CRPS). For approximately the first two years after diagnosis, I tried to continue my life as I had planned and this included going off to college to study a Specialised Chefs’ Scholarship at Poole and Bournemouth College. As part of this, I moved to London to work at a 5* hotel called Corinthia which was situated in Whitehall. However, about a year into my course, my world came crashing down when my CRPS got a lot worse and I started to develop severe ulceration on my affected right foot. I had to stop and had a couple of operations and spent about 3 months in hospital whilst they tried to fix my foot. Eventually in December 2014 my foot had healed and I went back to college in January 2015. I thought this was the end of my ulcers but just 2 months later my foot broke down and this time the ulcers were a lot worse. From March 2015 – June 2016 I had to have my leg and foot dressed and in plaster cast but because of the pain this meant the only way they could do this was under general anaesthetic. During this period of time I had 53 general anaesthetics in just 68 weeks which was an absolute nightmare and enough was enough. Also during this time, my foot got infected several times and a few times it got pretty serious.
I had been researching and asking for an amputation since February 2015 but for a very long time, but my plea seemed to fall on deaf ears for a very long time. However, after everything that I had been through in the last 3 years I soon realised that this was my only option. Amputation is not recommended as a treatment for CRPS because the CRPS can just return in the stump or spread to another part of the body. I felt that this was a risk worth taking for me because my quality of life had got so bad and all of the general anaesthetics were having a negative effect on my overall health, making me more unwell. At first the dressings under anaesthetic was meant to last for 6-8 weeks but very quickly this double and we were still in the same position and this was when I realised I had to do something myself and find out whether this really was an option and a risk I was willing to take.
By March 2016, I had finally found a surgeon who I knew had experience in dealing with CRPS amputations and so my mum and I travelling to see him. It was an extremely long drive, about 6 hours, which was agonising with CRPS but it was worth it. During my appointment I explained the problems I was having and my reasons behind wanting to have a below knee amputation. The surgeon said that he was willing to do the surgery, however, he said that it would be better if I found a surgeon closer to home because of the follow-ups and rehabilitation involved. This was also when funding from the NHS was refused and they said that they would not pay because it ‘wasn’t essential’. I spent hours researching surgeons in the UK who did amputations and I think I probably sent out about 40-50 emails to different surgeons in total. Eventually, I got a reply from a surgeon who said he didn’t do amputations but he knew someone who did and that might be able to help. About 1 week later I went to see this surgeon and he was brilliant and he also agreed that with all the secondary complications from my CRPS that a below knee amputation was my best chance of any kind of recovery. After having the usual psychiatric/psychological tests and seeing the rehabilitation consultant and prosthetist they all agreed that the surgery could go ahead.
On 18th July 2016, I went into hospital to have my right leg amputated below the knee. I arrived at midday and I have to say, I was not nervous at all until the nurses came to tell me at about 17:00 that it was time to go to theatre. I said goodbye to Dan (my fiancé) and my mum and I was taken out my room, down the corridor, down in the lift and to the theatre. To be honest on my way to theatre I was totally panicking and the nurses were trying to make light conversation with me but to be honest I couldn’t really think about anything else except thing of all the possible outcomes.
…When I woke up, the first time I looked at the clock I think it was about 9pm. I was so relieved it was over and my leg was gone. The following day, the recovery nurse came to see me and said, ‘Do you know the first thing you said when you woke up was?’ and I replied no. She told me, ‘You asked me if it was gone?’ I think that pretty much sums up how I felt about the whole thing really. I spent that night in intensive care to make sure that everything was ok and then I was moved back to my room the following morning. I spent 6 nights in hospital, I had an epidural after the amputation for 4 days and that was then taken out but after that the pain was so much less than I had before from the CRPS. I had intensive physiotherapy with a lovely lady called Jenni, trying to relearn my balance, being able to get out of bed, going up and downstairs and being able to get up off the floor.
The first week at home was difficult, getting used to doing more and more things for myself, having to tackle the stairs and things but I spent a lot of the time making more Lego models, including a VW campervan which looks amazing but too mum and I about 3 full days. I started having regular physiotherapy and just 16 days after my operation, I started walking on a PPAM aid (inflatable and metal pre-prosthetic leg). It felt amazing to be upright walking for the first time in 2 years. It was the simple things that surprised me the most at first, immediately after I was able to put a duvet over both my legs, I was able to shower my leg, able to sleep the whole night through without waking up and most importantly I am PAIN FREE and have no CRPS symptoms.
On 5th September, I got my first prosthetic leg and just 4 weeks later, I can now walk unaided for shorter distances and with a stick for longer distances. I still cannot wear my prosthesis all the time but I am gradually building up. My stump has shrunk so much that on the 17th October I am getting my second socket so hopefully it will be comfortable and fit well. Recently, I have started going back to karate training. I am also doing swimming, handcycling and wheelchair racing in the hope to reach the Tokyo 2020 Paralympics doing para-triathlon.
Although amputation is not recommended for people with CRPS for several reasons mentioned above, I am extremely pleased with how my amputation has gone and I am finally living life to the full. I am extremely pleased with my progress and hopefully things will continue to improve.
Thank you very much for reading the update to My Story.