Life with Charcot Foot

Hello readers. Thank you for supporting my blog and taking time to read. I hope you are all doing well today and finding some of the information helpful. Please feel free to message me on Facebook or leave a comment here if you have specific questions. I’m happy to help.

As I shared in my post the other night I want to talk more about my Peripheral Neuropathy and Charcot foot. Although I’m a registered nurse by training, I am going to talk about this from my perspective and not a medical lingo perspective.

I will talk more in a later post about my journey with type 2 diabetes. I was diagnosed though in my early 20’s. For many years I did have good control which help prolong any complications. I developed peripheral neuropathy though sometime in my early 30’s. This is a condition in which I have burning, numbness, and less feeling in both of my feet. I got a wound from a bad shoe in my mid 30’s that took almost a year to heal. I went for many years though without further complication. I was about 41 when I developed a bad wound on my big toe on my left foot and almost lost my toe. I credit two doctors at my physician’s office for saving that toe. They worked hard to save that toe. I went for daily dressing changes for a month and then twice weekly for another month and then weekly for months. It finally healed although I had cellulitis in it several times.

In early 2017 I noticed my left toe was shaped funny and my entire foot was swollen, hot, and red. You would think by now I was used to doctors, but I was scared and ignored it for a month or two. In March of 2017 I did go to a physician who sent me to the Emergency Room. I was so nervous and scared that this was my time to lose that toe. I decided I had to address it though and would deal with losing my toe if I needed to. I went in though and they diagnosed me with cellulitis again. Long story short, I was diagnosed with cellulitis a few times with no change in any symptoms. In May of 2017, my regular physician sent me to a Podiatrist who right away told me it was Charcot foot. I was diagnosed on May 12, 2017 and I will never forget that day because it changed my life.

In a nutshell, I had broken my left big toe and because I had less feeling did not have as much pain as a regular person. The other doctors thought it was cellulitis, but it was Charcot Foot. Walking on an injured toe for months caused the Charcot Foot. This is basically when the bones in your foot heat up causing swelling and warmth. Your bones then begin to melt if you will. This is the active phase and in my case treatment was strict non weight bearing until the active phase was over. I was placed on bed rest with a strict order to not put any weight on that left foot. I had a soft boot that I wore 24/7 during that phase. I took three months off of work to heal. I used a knee scooter to get around my house for those first few months.

When the active phase was over and my bones were stable, my foot shape was changed forever. In September of 2017, I was given a CROW boot to wear on my left foot. I was allowed to return to work in late August with my knee scooter. I did not walk again until late December and was very limited at first. In January of 2018 I did get orthotic shoes that I wear every day.

One of my favorite things in life was wearing my sandals and going barefoot. I was no longer allowed to do this. My left foot is called a rocker bottom because when my bones melted and stabilized, the arch of my foot has broken down. My foot bones are now much closer to the bottom of my foot and only have a bit of padding on them. Walking barefoot is actually painful. I have much less balance than I used to as well. I am limited in the number of steps I take per day. When I go long distance like to an amusement park or the Zoo, I use an electric scooter.

I will share more in my next post about this difficult time. I had some very dark times during this period. I will share what I went through and how my family helped me find life and hope again. I will also share how this led me to the decision to have bariatric surgery. With Charcot foot my goal in having bariatric surgery was to improve my diabetic control, maintain my neuropathy and not have it worsen, and get some weight off my feet. I also joined a Facebook support group which helped tremendously. I have moved from the dark back to the light. It was not an easy journey though.

My goal in this blog is to help others going through similar journeys as well as inform those who might be headed in this direction. Until next time, I wish you all well.

Mandy