Update on Charcot's status of my_left_foot (Melanie) in Australia

Hi Everyone

I thought I would update. After two years of wearing the CROW boot, and after being told by the Orthopaedic Surgeons that I would have to wear it for the rest of my life, I took it off Xmas week 2009, after two years of wearing. I went without it for a month and went and saw my Podiatrist who is a registered Podiatric surgeon in Australia. I stopped seeing the Orthopaedic Surgeon's six months prior, since they said they could do nothing for me.

My podiatrist has made me strong orthodics for both feet, which I slip into my sandals. He has described my foot now as "unstable" but out of Charcot's acute stage, with no guarantee that it does not go "acute" in the future. I feel it is quite deformed over the ankle area with quite a bony prominence, but most people don't notice it on sight. I have to be very careful about walking, so that I don't sustain further injury to it, and have given up sailing on monohulls, but am considering catermeran sailing. I am going to Spain, France, Italy, and Turkey in June for a month, and my Podiatrist says to wear my CROW then because I will be uncertain of the terraine and jumping on and off of trains.

I am very lucky that my loose and broken bones have not dropped down into the bottom of my foot which causes the most problems for people with Charcot's. I'm also lucky that where the bony prominence sits has not caused any infection inside my foot. He says that generally I'm lucky to have got out of having Charcot's without losing my foot. I put this down to my own persistence in an early diagnosis, plus compliance with wearing the CROW boot for 2 years. I believe that I could have probably taken it off after 18 months, but no-one would support me in this. In the end, I just took it off - making the decision myself and testing it out. I do not recommend this for everyone, but it seems here in Australia there is so little medical knowledge on "what to do" that they just take the option that is best for the medical profession, rather than best for the patient.

I feel very sorry and have so much empathy for all you out there suffering from Charcot's and I wish you well on your journey to good care and management of your lovely feet.

Melanie.
Australia.