Stop in and say Hi

kdramirez wrote:I totally agree . . . and it is amazing how far my "mental" attitude has come in the last several months. Probably more information about Charcot and the support I have received from sites like this is helping.

Now, when you say "when you get it again" . . . does that just mean having another flare-up or break another bone? Once you have Charcot, don't you always have Charcot, but just without incident???

Hi Kathy2

Melanie (myleftfoot) here. Have not checked the forum for a while. Regarding your questions about Charcot.

My Orthopaedic Surgeons (2), podiatrists (2), and orthpaedic boot/device maker all say that Charcot's is a condition that cannot be cured or healed, but can only be managed (just like Diabetes). There are different levels of seriousness of mismanagement of Charcot's, the most mismanagement will lead to leg amputation and possibley death. I was diagnosed with Charcot's 2 years ago next month in my left foot. I also have tendon and other problems in my right foot. I have worn a CROW boot for 22 months now. Also had a fibreglass cast for a period of 5 days that caused cellulitis and an ulcer and 2 weeks in hospital. This was because it was applied to tightly by the hospital and I was not told to say off my feet. Ulcer and cellulitis was on the top of the foot from the pressure of the cast. I have xrays which my podiatrist and orthpods look at every 6 months. There is a report that tells them if the Charcot's is deteriorating or stabilising. For the first 14 months, wearing the CROW boot my Charcot's continued to deteriorate, but if you wear something like the CROW it supports the bone structure in the foot, so that bones won't slip down to the sole of the foot, or left or right side and come through the foot (ulcer wearing from the inside of your foot OUT! - can lead to amputation).

This week I have had my first XRAY that says it is NOT deteriorating and so it has been suggested by my orthpaedic bootmaker and podiatrist that I move to an ARIZONA AFO or custom made shoe. This is what I want, but it's a scarey decision for me because my Orthopods tell me I should wear the CROW for the rest of my life or risk losing my leg! But a far as I can see the structure of the ARIZONA AFO *www.arizonaafo.com* looks as sturdy as the CROW but not as cumbersom - so I'm probably going to go for it!

When I was diagnosed, I had walked on my foot, which had multiple bone fragmentation for about six weeks. But I had swollen ankles intermittently for up to 18months before hand which I'm sure had something to do with the Charcot's. I wear foot orthosis in my right shoe because the arch has collapsed and I'm concerned there is something going on there also, because the tendons feel so tight.

There are no orthpaedic or podiatric surgeons in Australia who will operate on Charcot's foot. Not enough experience and they are scared that infection will set in the that they will lose the patient's leg. I would like the operation but cannot afford the health costs in the U.S. as I would have no chance of insurance.

Melanie (myleftfoot)