Charcot Foot

I'd love to be able to run and jump, I'd love to wear a pair of shop bought shoes. It's not that I don't own shoes but the right shoe always stays brand new, unworn in the cupboard with the labels still attached. So what's the problem? I've got Charcot Foot also called Charcot neuroarthropathy, a devastating, destructive neuropathic complication of diabetes. Symptoms of Charcot Foot include a foot that is warm or hot to the touch, swelling, redness over the affected area and pain. The level of pain experienced may be diminished due to loss of sensation in the foot. If left untreated nerve damage and impaired sensation from peripheral neuropathy can cause the bones in the feet to weaken which can result in inflammation, bone and joint collapse, fractures and dislocation, permanent foot shape deformity and can lead to ulcers and amputation. This is the outline of my feet showing the bony mass projecting from my deformed right foot.

I was diagnosed with Type 1 diabetes (or juvenile onset diabetes as it was called then) as a young girl in 1978. I'm sitting in hospital practicing injecting water into an orange being told I'll need to test my urine for glucose (home blood glucose testing was about 7 years away) and look out for foot complications, eye problems, kidney problems....it's a lot to take in on top of being told I'll have to inject insulin for the rest of my life- I was told there would be a a cure in 10 years but the much awaited 1988 came and went.  I look around the children's ward for clues of what on earth has happened to me and there's a poster of a tightrope walker crossing a valley with words along the lines of  'Diabetics have to do this every day', that image has stayed with me over all the years. I can remember thinking I hate P.E, I'm always the last one picked for the netball team and now I'm going to have to take up gymnastics whilst injecting myself and never eating biscuits again. Could my life get any worse? The importance of balance in all things diabetes hadn't yet dawned on me nor had the permanence of the diagnosis.

It was all so frightening and overwhelming, information was very limited and hard to come by. The British Diabetic Association magazine was my main source of information every month along with a few lines in my Biology 'O' Level text book about insulin being produced in the Islets of Langerhans. I thought the Islets of Langerhans sounded more like an exotic Caribbean holiday destination than a vital cluster of insulin producing cells my own body had turned on and destroyed. I didn't know any one of my age with Type 1 diabetes and felt really isolated with it landing in my life.

The only foot problems I'd ever encountered were a few blisters that had healed quickly, I couldn't imagine what a diabetic foot complication could be beyond what I'd already experienced. That lack of accessible information and knowledge on all things diabetes and complications carried on for me through my teens, through my twenties and on until dial up internet arrived in my home at the end of the 1990's. I could never have imagined the devastating foot complication that side swiped me that day in May 1997. I rapidly developed a very painful, swollen foot out of the blue without any recollection of injuring myself and was sent to A&E by my GP as they suspected a fracture. I had an X Ray which was clear and was diagnosed with a sprain although I said I hadn't hurt myself. I was sent home having been told things would settle down in a week. I didn't make it to a week, 48 hours later I was in agony, my whole foot shape had changed, all my metatarsals had fractured across my midfoot causing a large mass of bone to project along the inner side of my foot, my arch had collapsed and was projecting below the level of my foot called a 'rocker bottom' deformity and some of my toes had dislocated. My whole foot was twisted and broken. It was horrifying to see the physical destruction that had happened in such a short time without any external force or trauma.

Times were very different before home internet without smart phones and tablets, there was no instant advice and help available. There wasn't a designated diabetes podiatry clinic in my area to ask for help. Typing 'hot swollen diabetic foot' into a search engine today returns Charcot Foot as a potential diagnosis at the top of the list with advice to seek urgent medical help. Sadly that wasn't an option when I was seeking help in 1997. That precious window of 48 hours after I'd attended A&E when my foot had been swollen but intact passed me by, perhaps with some protection my bone collapse may have been avoided. I'll never know if that was a chance lost and that makes me sad to this day. I was admitted to hospital and that was the first time I heard the term Charcot Foot.  I stayed in hospital for 3 weeks having scans and waiting for the swelling in my leg to reduce so I could get a non weight bearing cast, a surgeon told me I should consider amputation as neuropathic feet were not operated on but were amputated. I'd gone from being able to walk normally to discussing amputation in the course of one week.

My life in terms of diabetes management in the few years pre Charcot Foot had been very  challenging. I'd battled with a complex Type 1 diabetes eating disorder now called diabulimia -it didn't have a name back in the 1990's- and the issues I'd faced during that period caused serious complications and damage.  I lost the sight in both my eyes for about 1 year from sight threatening retinopathy and had only just regained central vision in my right eye after multiple surgeries when Charcot foot happened. I've lived with that level of sight loss ever since.

I set out on my life on crutches with my leg in a non weight bearing cast.  I soon learned to think long term with Charcot Foot, the follow up hospital appointments were usually 3 months apart. At the beginning I optimistically took a shoe to each appointment in the hope I'd be home without a cast but that didn't happen. Over the following years every time I tried to come out of a cast I suffered further fractures and finally my ankle joint collapsed completely with more bone destruction. I had a number of pressure ulcers from putting weight through the wrong areas of my feet - some that required skin grafts to heal. During this time my other foot started to fracture with metatarsal and ankle fractures that took months and surgery to heal. One broken foot is difficult, living with both feet in casts really did stop me in my tracks and made me very fearful for the future.



Charcot Foot is a devastating, debilitating, unpredictable  complication to live with. It's consequences are terrifying and puts my feet at very high risk of ulcers and amputation. The mass of disorganised bones in my foot- although held by surgery- mean I put pressure through the back of my heel increasing the risk of tissue breakdown. The position of my foot is fixed so I can't change where I land.  I've had multiple surgeries to try and hold my ankle and foot together but my bone chemistry isn't working efficiently after 40+ years of Type 1 diabetes and despite trying various drugs I've failed to grow sufficient new bone around the metal to form a solid, stable union. I'm in a cast as my foot has a fracture and is generally too painful without support, I've been told I should have a below knee amputation . For the time being I've decided to keep going as I am as thankfully my circulation and skin are reasonable and I know I can manage with my limitations.

23 years after my initial swollen foot I walk with crutches on a deformed foot and no ankle joint. It scares me every day as I check for skin damage and any further bone collapse. Charcot Foot is quite a rare complication although with the increased prevalence of diabetes in the world cases of it are increasing. I haven't seen much written about it, I've only met a few people with it and that was unsurprisingly at a Charcot Foot clinic. People who ask what is wrong with my foot cannot believe that a complication of diabetes could possibly cause bones to fracture. I had never heard of it until it happened to me and only recently have I been able to talk or write about what  happened. I dealt with the physical problems because I had to but the guilt and fear it has caused me remained shut away. I wanted to write this to increase awareness of Charcot Foot just in case someone else should ever find themselves in the same or similar situation to me.