What we all need to know about Charcot Foot (cost, work, feet)
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I have been diabetic for 22 years and not once have I heard about Charcot Foot. And I am a well read, educated and curious woman who never fails to seek out medical attention when I think I need it.
Please read this article. I will tell you my story.
One morning I woke up and my foot was huge swollen and bright red. No cuts or openings. I always check my feet every single night. I had broken my big toe a few years earlier and it was always a bit bigger than normal but no other problems.
Tried antibiotic pills till they made me sick. The doc sent me to the hospital thinking it needed immediate attention. She is geriatric specialist and was quite alarmed. One week in hospital on IV antibiotics with diagnosis of cellulitis. Endocrinologists, Infectious Disease specialists, Orthopedists all involved. sent home- back in 2 days for another week in hospital. Every time I asked to see the Podiatrist on staff and they always said "Oh we've got this. It's cellulitis and we'll take care of it"... battery of tests, C scans, biopsy--you name it. During the course of this illness frequently the topic of amputation is mentioned.
Sent home on IV antibiotics for SEVEN WEEKS. Do you know what antibiotics do to your guts and lady parts?????
Foot color and temp and size somewhat improve but I'm still concerned. I finally arranged to see the Podiatrist on my own (He is the only one on staff at UNC and is hard to see). He immediately said Charcot but ordered More tests. He told me I would have to be in a CROW boot for TWELVE FREAKING MONTHS!!!
So here I sit 9 months after that Red Foot Day. Constant back aches from uneven walking with one hip higher than the other, life completely changed for me and my family. I am grateful that I was able to save my foot. But I've gained an inordinate amount of weight, I withdrew socially, house is a mess and my family life is a mess with two 13 year old girls going through puberty and all that middle school drama, DH is exhausted from hauling out the wheelchair for doc appointments and doing all I used to do. He has become the only driver in the family.
One bit of good news is I was told last visit I could now be put into a custom made shoe and the CROW boot time was soon to be over. My foot is permanently DEFORMED. I'm waiting for those shoes now. Medicare pays for 1 pair a year.
CHARCOT FOOT IS SOMETHING EVERY DIABETIC SHOULD KNOW ABOUT.
It is deformed because your foot is broken and you've essentially been walking on broken bones. They've fused in a deformed way. Charcot is becoming more and more common. The mostly diabetic person has neuropathy, cannot feel if there are any problems with the feet and essentially due to stress fractures etc not healed properly over time, the foot , or the bones, collapse.
Many doctors still are not entirely aware of this and it's good youve found a podiatrist.
We talked about it but doc says it is not necessary in my case. I've seen some gruesome pictures of midline collapse, etc but mine is across the top of my foot from the broken toe years ago.
I just think it is important to get information about this condition out and thank you for your contribution. I know one woman who went to seversal podiatrist who told her Charcot "was not a real thing". Reminds me of when they thought asthma was psychological problem!
How is your foot now? Are you going to be able to walk on it comfortably again?
I think it's really important that you're sharing information about the condition. They talk about it sometimes on the ADA forums, mostly in the type 2 forum. So I'd heard about it before but hearing about the difficulty in getting a diagnosis is something I hadn't heard about.
About the weight gain and everything else you've been going through, I've spent some time in a wheelchair and I know how it affects every aspect of your life. There are seated workouts that you can do in the wheelchair or in a sturdy chair, to give you a way to exercise until you can walk again. Once your doctor clears it, a recumbent exercise bike or a regular bike with a foot-forward design would be a way to exercise that won't put a lot of strain on your foot but will allow you to build back up the muscle that you've lost during your time in the wheelchair. The reason a foot-forward bike would be better is that you don't have to be able to point your toes to reach the ground on it. My bike is a Townie, and that's why I got that specific bike...recovering from leg surgery and I couldn't point my toes to ride a regular bike.
My foot is still swollen and I can't even get in any of my DH's shoes but doc suggested it best to stay in the custom anyway. Not a lot of choice and I don't care about fashion but it's a different lifestyle to have only 1 pair of shoes. Mine cost $550- $700. I just this past weekend accepted the fact my old shoes will never work again and I'm not talking about stylish shoes--I'm talking Clark's and Merrills- not know as fashion shoes by any imagination. But I also have some nice Birkenstocks that I can't even wear and sport shoes are out of the question too. I bagged them all up- including many new in the box and suede boots, sandals, etc and will take them to the PTA thrift shop.
I was experiencing excruciating pain for several years. I 'll look for the thread I started on it but since I've been in the CROW Boot that was subsided greatly. It's hard to explain to people how your feet can be numb but you still have pain! https://www.city-data.com/forum/diabe...foot-pain.html
My husband is an Orthopaedic Foot and Ankle surgeon and treats a lot of Charcot foot. Most of it is referred by Primary Care physicians, but some is referred by Podiatrists if they have complicated cases they can't handle. Nobody wants to treat it and the surgery has a high complication rate. Avoiding amputation is the goal, but often not viable.
You are correct in your statement that many practitioners don't know much about the condition, and that it is, in fact, a real, bona fide condition. TBH, I am about the several podiatrists said it was not a "real" thing.
Thank you very much. The first time my broken toe got infected the first ortho guy I saw wanted to cut it off. Ran to my primary and ended up 1 week in hospital on IV antibiotics and 6 weeks at home on central line. That was obviously the beginning of all this. Wish I had known about complications of foot injury for diabetics at that time.
I've always known about diabetic amputations but thought it was because of inability to heal after broken skin or ulcer or something like that...nothing internal. I guess I just didn't have enough information.
This is my favorite seated workout video: https://www.youtube.com/watch?v=OA55eMyB8S0 You can skip any parts that are too tough on your leg. I didn't think a workout like that would be much exercise, but it is.
Thank you very much. The first time my broken toe got infected the first ortho guy I saw wanted to cut it off. Ran to my primary and ended up 1 week in hospital on IV antibiotics and 6 weeks at home on central line. That was obviously the beginning of all this. Wish I had known about complications of foot injury for diabetics at that time.
I've always known about diabetic amputations but thought it was because of inability to heal after broken skin or ulcer or something like that...nothing internal. I guess I just didn't have enough information.
If this podiatrist ID'd it right away and is responsive to you, then stick with him. But, I know Duke has Ortho Foot and Ankle faculty, and I am sure UNC has to as well. They are very sub specialized, so some Ortho departments just use podiatrists, but I would be surprised if that was the case in the Research triangle.
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