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requesting info on Charcot foot

by Cori
(Canada)

Hello

Thank you for your information on Charcot Foot. You have explained things in a very straightforward way that is very easy to understand, by far the best basic information that I have found in all of my web searching.
I have developed this problem in my right foot and now my left foot is deteroitating very quickly. I know everyone is different, and it is impossible to give an absolute response to anyone without knowing all of the details ....BUT ... can I ask you a couple of questions. I have been wearing a Charcot boot on the right foot, having xrays every 3 weeks ...going for a cat scan next week on the left foot because of how quickly subluxation is taking place.... I have been grounded.... I am off my feet as much as possible ....
My question is ...
Is there anything else that can be done ?? Is this the only treatment for this horrid problem and HONESTLY PLEASE, what should I be preparing myself for .... do you have statistics with percentages of what usually happpens
Is there light at the end of this tunnel or am I fooling myself by this "wait and see" train of thought ....should I be preparing for the worst ..... and just what is that ....
I can deal with things much better when I know in my head what the reality is. Can you help me out with this please
Thank you
Cori

form Canada

Hi Cori,
Not an easy condition to have but there is a light at the end of the tunnel. It sounds like your doctor is on top of things by having you in a boot, taking regular x-rays (even a cat scan).
The good news is that this is usually a self limiting condition and once you are through stage one (the inflammatory stage) the body will begin to heal itself. What you are left with will be the big question.
Generally speaking with the use of special shoes or perhaps nothing more than an orthotic, most people with a Charcot foot can lead fairly normal lives. If the destruction to the foot is more severe than sometimes surgical intervention is necessary to remove any excess bone that may be "getting in the way".
I know nothing of your medical history, your age, your occupation, your activity level or what caused your charcot foot, but I suspect you might be diabetic since that is the biggest cause of this condition.
What you can do for yourself is to take charge of your life; if you are overweight, lose the weight. If you are diabetic, work your hardest to control your blood sugars, the better your blood sugars are controlled, the less damage to your body from the disease.
Work closely with your doctor during the inflammatory stage to minimize the damage; the less damage done, the less problems later on.
Good luck.
Marc Mitnick DPM

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followup about charcot foot

by cori
(canada)

Just realized I should have added some personal info
51 yr old female
10 year history of Neurosarcoidosis
10 years of long term high dose steroids (many years over 40 - 60 mgs per day)
last 3 years at 10 mg prednisone
5 years of severe "peripheral neuropathy"
steroid induced diabetes for 5 years
about a year of trying to get someone to look into the fact that I could feel and HEAR my ankles grinding and clicking ~ everyone said not to worry
I kept asking if i was doing any damage by working out, and walking on these scraping feet ....every doctor said no problem, just ignore the noise (!!!!)
Now I am sure that this was the beginning of this terrible problem ....what do you think ????
Cori from Canada

Hi Cori,
Well....you seem to be under the care of a doctor that understands the problem so you have put yourself in the best position possible. The fact that you have been on so much prednisone, in the long run, probably does not help your prognosis, but the reality is I do not think anyone can predict with any certainty how this will all play out.
Keep a positive outlook, follow your doctor's advice, be your own advocate and keep researching your problem; everyday new ideas come forward in medicine and you may come across an advancement for Charcot foot before your doctor. Hopefully, the condition will run its course and you will escape with minimal damage.
Marc Mitnick DPM

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May 07, 2018
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Info on charcot
by: Dawn

Hi Cori
I am so glad I ran across your message! I to have a similar problem I got Charcot diagnosed in February 2008!
I have a lot of issues with my back and have been on a lot of steroids during this time I begin having peripheral neuropathy in my feet and in my hands for about two years then they found the Charcot then several months later the Diabetes showed up! My right foot is more collapsed than my left foot but I did end up getting it in both feet! It took a couple years but then I begin to go into stage III so now I wear Charcot bivalve Boots- they come up to just below my knee and have been molded to fit my feet and legs I am pretty much still nonweightbearing I have been in a wheelchair for 10 years however I can walk about 10 feet to get to the toilet and such! I sleep with my feet raised up due to the swelling I have chronic pressure wounds The main one on the bottom of the foot is due to A protruding bone facing downward they cannot do surgery on! And other pressure wounds from the boots! You are the first person I have heard of in 10 years that has a similar situation to mine! Oh by the way about seven years after being diagnosed with diabetes I no longer have it! Which I believed all along to Be from the steroids and after hearing your situation I believe it’s true!
Thank you for sharing your story! If you have any further questions for me please don’t hesitate to contact me!

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(location unknown)

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Unknown location

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Colorado

Wonderful advice

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