Charcot's Foot, Anyone else out there with this?

I have had diabetes for 35+ years and am now 52 years old. I have had an insulin pump for approximately 13 years. I have many high points of good control and other low points of not so good control through the years. MY recent struggles have been with Charcot’s foot, which I had never heard of before or have not met anyone who has had this diagnosed. I am told that it is seen in diabetics who have had neuropathy in their feet for many years, which eventually effects there bones, essentially softening them and causing them to easily break and move around. By the time that I was diagnosed with it, after walking around with what I thought was a sprained foot for awhile, figuring I had hurt it without knowing due to my inability to feel a lot in my toes, I had several breaks and the bones on the top of my foot were a mess. Had surgery to “fix” it, followed the doctors orders strictly during my healing, got back on my foot, walking everyday as ordered to further my healing and seemed to be doing OK, and was OK knowing that it would never be as it was before but feeling very lucky to be back upright and walking again. Then I caught my foot in wires under a desk at work, fell down onto the floor and broke two bones in my other foot due to this accident. So while walking on crutches and putting all my weight onto my foot that I had the surgery on the previous year, I began again with the charcot foot symptoms. So am now getting around with two boots on, in a wheel chair, until the accident foot heals, which is happening slowly because of my diabetes and having a Krow walker made for the charcot foot to wear after letting the flare up rest up a little. Just feeling very down and frustrated and wondering if anyone out there has dealt with Charcot’s and has anyone had some good results from treatment???

@jenniferhebert

Jennifer,

I have had diabetes for about 42 years and had not suffered any known neuropathy.

Like you stated I think sometimes during those periods things are really good and things are not so good.

I am very sorry to hear about your situation and I wish you the very best. I will certainly be checking my feet more often.

Take care and have a speedy recovery. All my best,

Scott

My husband has charcot arthropathy. He had T1D for 21 yrs before receiving a kidney/pancreas transplant. He was cutting grass one day and thought he was bitten on the foot by some type of bug because his foot swelled and became red. Docs thought he might have had gout or rheumatoid arthritis, but when he was sent to a specialist, he recognized the charcot immediately and sent him to an orthopedic surgeon. The bones in his upper foot completely collapsed. He had surgery to implant a Taylor Spacial Frame which had 9 dials on it. We were given a chart and every day, I had to change the dials in order for his foot to be corrected. That took 3 months. He was casted and booted several times after that. Had a total of 8 surgeries over 5 years. Pins were put in to keep his bones in place. Some surgeries were to help the wound on the bottom of his foot to heal. He also had a Krow walker twice. This all started on 12/27/2005. Today he wears a brace on that leg for support, but otherwise is fine. His patience was tested to the max during the whole ordeal, but it was worth it. He was able to attend our daughters college graduation on this feet in 2006 and walked her down the aisle in 2012. Don’t lose hope. Good luck.

Hi Jennifer - My good friend started this foundation, which might be a useful resource to you: http://www.hnf-cure.org/. Best of luck.

Is there any body out there with Charcot syndrome