Why Didn’t Anyone Tell Me?

Advanced Duration Blog

Why Didn’t Anyone Tell Me?

April 5, 2011

I danced barefoot for many years, starting in my early childhood, through my teen and college years and as an adult up to age 50. Even before I was diagnosed with T1DM at the age of 8, I have danced. I studied and performed ballet, modern, jazz, creative movement, afro-caribbean, belly dance and folk dances of the world. Dancing has been my fitness routine for as long as I can remember. Diabetes never got in the way of my dancing until I developed a neuropathic Charcot foot.

Living with diabetes for a long time can have a complacency effect. It happened to me with foot care. Sure I had heard the talk “Take Care of Your Feet” from various diabetes educators, MDs and ADA sponsored patient information days. You get the printed handouts and someone tells you to check your feet everyday, wear properly fitted comfortable shoes or slippers at all times, keep your feet clean and dry, trim or file your toenails straight across and don’t put lotion between your toes. But no one ever mentioned neuropathic arthropathy or Charcot foot.

In November 2004, I was teaching a belly dance class at the YWCA when my right foot buckled while demonstrating a dance combination. I unexpectedly slipped and gracefully, collapsed to the floor. Odd, I thought, where did that come from? I got up, shook myself off, looked at my foot and did not see anything that looked out of the ordinary. I did not feel any pain or soreness so I shook my foot a couple of times to release any residual trauma and continued to teach the class.

Over the next 2-3 weeks, I continued to walk, teach and work as a home care nurse as if nothing happened. I forgot about my little mishap at the YWCA and carried on with my life. My husband and I drove to Buffalo to help my mom pack up her house in Buffalo to move to Schenectady. I spent two days walking up and down stairs packing and carrying boxes to load into the van. During this time my R foot began to throb and would swell up by the end of the day. By the end of November, my R foot was swollen, red, and hot to touch with a dull, throbbing sensation of pain. My primary care MD looked at it and thought it might be a sprain, so she sent me to an orthopedic MD for x-rays. He didn’t find anything on the x-ray, said it was strained and sent me home to rest and ice it.

The foot didn’t get any better. I continued to walk on it and drive my car to see patients. It was swollen and hot. In early December my endocrinologist at the time looked at it and said it might be gout, cellulitis or something vascular, so he ordered tests to check the inflammation makers. Everything came back negative for whatever he was looking at. I went back to see the orthopedic MD for follow up and this time saw one of the doctors, Dr.W, who was familiar with me and my medical and personal history. He evaluated me more carefully, diagnosed me with tendonitis and gave me a CAM walking boot to wear to protect my foot and ankle while it healed. I wasn’t able to drive with the boot on and couldn’t do field work to see my patients in their homes, so I went out on short-term disability for 2 months. In the meantime, my teaching assistant took over the dance classes and I rested my foot. Or so I thought.

It was now March 2005. The orthopedic MD said I could start weaning myself from wearing the CAM boot and start wearing regular shoes again. He said I could go back to work after the next visit if everything looked good. One day just before I went to see him for that final check-up, I was slipping my foot into my shoe and I heard a crackle sound from the middle of my R foot.  Ooh, I thought, that doesn’t sound good. I told Dr. W about the crackling sound; he sent me for a series of x-rays and MRIs.

He called me back in two days later for another series of MRIs, then he sat me down and told me “You have an early case of Charcot arthropathy.” He said advanced stages of Charcot foot disease is a fairly common complication seen in poorly controlled diabetic feet, but he almost missed it in my case because he has never seen it in such an early stage of development. Typically Charcot foot is diagnosed when the diabetic foot has sustained considerable damage. He said it causes a collapse and deformity of the bones and muscle structures in affected feet, and when left unrecognized and untreated it causes rocker bottom deformities and can lead to amputation.

He said most likely I injured my foot, but didn’t feel any pain on the initial injury because of neuropathy. He called it Charcot neuroarthropathy and neurogenic arthropathy of the foot. Forty years of living with diabetes and I had never heard a mention of Charcot foot! I am an RN and a CDE and I had never even heard of it!

I looked it up in every medical and nursing dictionary I could get my hands on – not much information there. I looked online and educated myself on the condition and treatments by reading the research articles I found in my search. Unfortunately, most of what was written then is about end stage Charcot foot disease and how to salvage limbs. I wanted to know what can be done to prevent it, and how to recognize it in the very early stages before the devastating damage is done? As time went on, I looked in the 2006 AADE Desk reference. It has a two sentence entry on Charcot foot in an 821 plus page book on diabetes education for diabetes educators! I did my own fact gathering research.

Fortunately, Dr.W was astute enough to look deeper at what was going on with my foot and he treated me preventively. I had to be non-weight bearing for 4 months with my R foot and lower leg in a cast to keep everything in alignment in order to heal without deformity. I still have “an early Charcot foot”, but it is stable for now. I am fairly functional, but still vulnerable. I am no longer able to dance or exercise as aggressively as I had been able to before I injured my foot. I have to wear custom orthotics and sensible shoes to protect my neuropathic feet. If I had known then what I know now about Charcot neuroarthropathy in diabetes foot disease, I may not have suffered the life altering damage that I ended up with.

So, my dear sisters, when they say, “check your feet”, pay attention to the subtle changes and do not ignore anything. See a podiatrist for regular care of your feet, and immediately if you a have a red, hot swollen foot.  Wear comfortable and sensible shoes – do not trade the welfare of your feet for trendy shoe fashions. Dance barefoot at your own risk. And remember – Charcot foot process is a very real possibility for all of us who live with diabetes.