My story begins over 4 years ago in April 2002 when I was 19. Whilst on a driving lesson, I was involved in a car accident. I was stationary and was hit from behind. My instructor and I both had whiplash and my left foot had slipped off the clutch and twisted on impact, but at the time felt like a minor sprain. Over the next 3 years the “sprain” became progressively worse. I was experiencing swelling around my ankle which was also painful and felt constricted inside, my right rib was noticeably prominent and lower than the left and my flexibility had stiffened up by half. I was having trouble getting consultants to take my problem seriously. One consultant told me.“ you have average movement for an average person, I don’t know why you are here to see me?“ Needless to say, I left the hospital in tears out of frustration.

I was a professional dancer but through pain and the inability to balance on an unstable ankle/foot, I could only manage work as a dance teacher 3 days a week. In an effort to try and rectify the problem, during this frustrating period, I tried… physiotherapy, physical therapy, reflexology, deep tissue massage, acupuncture, taping, had orthotics made, fitted and built up …all had helped short term but each relapse I had, got worse. I had numerous x-rays, blood tests, MRI scans, bone scans, dye injected bone scans, radioactive dye injected bone scans, …but nothing was showing. Unable to bear the vibration and pounding of Tap dancing, I had to finally quit work as a dance teacher at the Sylvia Young Theatre School. After seeing numerous doctors/consultants and having tried an unsuccessful nerve block, I asked to be referred to Mr Mark Davies who sent me for a NCV/EMG test which confirmed I had Tarsal Tunnel Syndrome. It’ll all be over soon I thought…but it was only the beginning.

In July 2005 I had an operation of decompression of nerve, space-occupying lesion and a plaster cradle applied. The operation went well, although there were a few complications as the nerve was very compressed. Because I am allergic to non-steroidal anti-inflammatory drugs, and I had experienced a lot of swelling right up until the point of having surgery, I was advised by my surgeon to spend 2 weeks confined to bed with my leg elevated as he did not want extra scare tissue to form in the space he had freed up. However, the following day the physio and nurse came to see me and wanted to help get me used to using crutches as I was due to go home the following day. I swung my leg down off of the bed and the pain increased dramatically. This was the start of a new type of pain I didn’t know existed. Over the following weeks I my symptoms became more bizarre. My leg was hot to touch and would generate a lot of heat during the night. I would sweat excessively. I could not bear bed linen near my foot. If I managed to get to sleep I would be woken up because my foot felt like it was pressing against a wall, I would have to open my eyes to reassure myself that there was nothing near. It was like my mind was playing tricks on me. I started physio which was agony, and had blood tests to rule out infection as a possible cause to my symptoms. The results were clear. After a month I was still unable to get my foot to a walking position. My consultant said that the only option was to have a second operation of manipulation of joint and plaster cast applied as my foot would become a useless limb otherwise.

On 30th August I had the operation. As soon as I woke from the anaesthetic things were very different. I felt like I had, had a bad body transplant. The operation I had just under gone was not invasive yet I was in more pain than when my ankle was cut open! The electrical, shooting burning pain kicked in at a level that I can only describe as un imaginable! I was in so much pain I could not speak yet inside I was screaming. Even morphine had no effect. As the weeks passed and the cast was removed, my foot still felt foreign to me. The swelling was still present with a new development, both feet changed colour even at room temperature. I was now able to shower sitting on a bath board but it was a horrid experience as the water felt like daggers. I still had total numbness of my toes and around the heel. I was also experiencing severe pins and needles which I’d liken it to phantom limb pain but the reverse. I had the limb but could not feel it. The vibrations in a car, someone walking across floor boards, people talking, a gentle breeze all of which would set off the uncontrollable pain. Common pain killers had no effect. Immediately Mr Davies referred me to Dr Teodor Goroszeniuk (a pain specialist) who confirmed I was suffering from chronic Peripheral Neuropathy / Neuropathic pain and Complex Regional Pain Syndrome type ll (Causalgia) also known as Reflex Sympathetic Dystrophy Syndrome. He prescribed me Lyrica (Pregabalin) 300mg per day, Amitriptyline 10mg before bed and Lidoderm (Lidocaine) anaesthetic patches to take along with Tramadol 50mg when needed, that Mr Davies had already prescribed. All of which helped control the continuous pain which felt like a constant loud noise unable to mute.

Over the forthcoming months I worked hard at overcoming everyday tasks, the things most of us take for granted. Getting dressed, having a shower, washing my hair etc were suddenly hurdles but hardest of all was walking. I found it very difficult as I had a lot of muscle waste, was generally weak and my level of fitness had decreased. I had little to no normal feeling (other than pain) in the sole and top part of my foot and had lost physical awareness of how to walk. I used my local shopping centre as a rehab and because it is undercover, covers a large area, is flat and has a seating area it was perfect for pacing my progress. I started by saying to my self “heel toe, heel toe” when I walked to remind myself to roll through the foot. I found it hard to concentrate if someone was trying to have a conversation with me so I did it in silence. I could only walk in shorts spurts at first because of the pain and swelling, I was taking pigeon steps but I measured my progress by how many shops I could pass and to much pleasure of my fiancé I was not spending money! As my confidence grew and I could walk and talk at the same time I got more competitive and I was determined (with stopping to rest in-between) to walk a whole lap. My fiancé wasn’t amused as it took two and a half hours the first time, but he was very supportive and by Christmas I was down to using one stick and the wheelchair only for longer distances.

I felt a strong urge for awareness as I didn’t want anyone else to go through what my family and I had been through, as it had impacted on all our lives both emotionally and financially. In November last year I decided to turn a negative situation into something positive and set up a website about my experience with Tarsal Tunnel Syndrome and Neuropathy. It is somewhere I can publicly record things which have been of help to me which may be of help to others. In doing so I am now in contact with medical professionals and other sufferers around the world. I found the Neuropathy Trust by an internet search and with the info and support they provided me I wanted to give something back. I designed a heat sensitive/ colour changing charity wristband and backing card for the Trust. The slogan on the Wristband says PLEASE NOTICE NEUROPATHIC PAIN and is now being worn by some celebrities such as Tom Fletcher from McFly, Mohammed George and Louisa Lytton from EastEnders. I approached Sylvia Young about raising funds for The Neuropathy Trust with a Christmas Carol service. With the help of the staff and pupils last year we raised £1,486.13. Photos can be found on this website and were also published in Issue 24 of Relay in 2006.

In April 2006 I seemed to had reached a standstill with progress. My consultant referred me to two NHS Professors for a second opinion and more investigations. It somehow felt like I had reached full circle. During this period a Dutch doctor told me of a treatment in Eindhoven, Holland called Aqua Tilis Therapy. It is a type of steam cabin with a magnetic field and the inventor was a medical engineer who also worked for Philips. I wasn’t sure about this alternative treatment at first but as I was told that I could no longer be operated on as my whole body had reacted badly to surgery..I had nothing to loose as this treatment was not invasive. The Koma Tou Yialou Association UK kindly donated the money for me to go for this treatment. With the blessing of my consultants off I went to Holland. After 3 treatments the difference in before and after was visible and on my return home my consultants were very pleased with the results. It help cut down my pain and hypersensitivity, It also stopped the colour change in my feet, my circulation improved and I regained some “normal-ish” feeling into the sole of my foot which had been numb for some time. This had a knock on effect as my mobility improved and with the decrease in pain I was able to cut down and eventually stop all of my pain medication. Aqua Tilis Therapy is not a cure and may not work for everyone but if considering it you should discuss it with your consultants first.

The underlying cause of my neuropathy may never be known which is something I have now excepted. I am due to go on a pain management programme for 1 month at the Input Pain Management Clinic at Guy’s and St Thomas’ Hospital in London. My pain specialist who also works there has invented an external neuromodulation device called the MultiStim Sensor which is similar to Tens but more specific to pinpointing the nerve. I have found it very effective. It will be available on the NHS and hopefully I will be getting my own device soon!

As a long-term pain sufferer it is important to try and enjoy the things I used to enjoy before my life of nerve problems and to except my situation but at the same time work hard at trying to improve things. I can no longer dance and had cut myself off from the thing that I enjoyed the most. I have done my grieving for my loss and am glad to say that I can now go and see my friends in shows and support them at events. It’s still emotionally painful but it’s better than not having dance in my life at all.

In July my fiancé’s mum spotted a job advertised in their local newspaper that fitted what I was looking for, I had recently stopped taking all of my pain medication, and was less dependant on my walking stick so I felt ready to go back into employment. It was for the position as a part-time Training Administrator at the charity Sense who helps / supports deafblind people. I applied, had an interview and was offered the job. I was very happy to except. Now that I am working again my fiancé and I have been able to get a mortgage and we have just bought a small one bed flat which is walking distance to local amenities, transport and my work! Although I still have neuropathy and pain, I feel that I have gained back some control over my life and can start looking to the future. I hope that others can also do the same.