By Deb54 Latest Reply 2012-01-24 01:56:14 -0600
Started 2009-01-14 00:25:40 -0600

Does anyone else have Carcot, and how are you dealing with it.

23 replies

toomuchman 2012-01-24 01:56:14 -0600 Report

Charcot is a nightmare. I was diagnosed in September 2010 after walkin on a broken foot for 3 weeks. I have severe neuropathy so I had no idea. My left foot is really bad, you can see the bone pushing out the bottom of my "rocker" foot. My right foot was just starting to show bending of the bones but then I had a bone infection and they amputated my right foot last January. Now I have one deformed foot left. I need reconstructive surgery but I first have to get lap band surgery to lose weight. There is no way to save my foot without losing weight. But I lost my Medicaid in December so no insurance now. I am try to go on ss disability so I can eventually start the process. Don't know if I will be able to save the foot. spending 6 to 9 months in a wheel chair is unimaginable. I spent 3 months in a chair after the amputation and that was bad enough. I learned to walkl with a prosthetic easily because I could feel my foot before, I was prepared for it. I am seriously considering getting my left foot amputated, I think it would be mentally easier to deal with.

Richard157 2009-03-30 09:01:37 -0500 Report

Deb, have you seen this other thread on Charcot?

Deb54 2009-04-01 21:16:50 -0500 Report

Richard, I reseached everything I could over the past six years, I've also talked to more than one specialist about it. The surgeon that did my surgery said that the bones looked like a hand grenade had went off in there. Surgery was a last resort, we tried everything. But I read that and I appreciate your sending it. Deb54

Deb54 2009-04-03 00:03:33 -0500 Report

Is anyone undergoing Hyperbaric tx? I have'nt being going long, but being in that glass-like coffin for two hours can play hell on your nerves. I have talked to a few other people going and they say stick it out, it works. I may end up sitting out on the lawn weaving baskets or playing in my crayon box, but I'm going to stick it out. I'm curious as to the success rate and how others deal with it. Deb54

Deb54 2009-04-25 20:32:42 -0500 Report

PLEASE anyone with diabetes see a GOOD podiatrist at least six months to a year. It's worth it to save your feet. Deb

myleftfoot 2009-02-04 08:00:41 -0600 Report

Dear Deb

I developed Charcot's in November 2007, although I was having foot and ankle swelling intermittently for up to 18months before that. Then I had a "minor trauma" while sailing, and then walked around on a multi-fragmented left foot for six weeks before being diagnosed with Charcot's two days before Xmas day 2007.

I am in Australia and I cannot find contact or support with any people who have Charcot's here - only one lady whose husband has just been diagnosed whom has contacted me through another discussion forum.

I am trying to accept that nothing can be done about my left foot, other than wearing a CROW (which I've been wearing for 13months now) and hoping and praying that the other foot isn't next. My advice from two orthopaedic surgeons and two podiatrists is - if you don't loose your leg that is all we can hope for.

I have not pain (a blessing). Nobody operates on Charcot's foot here in Australia.

I'm going to try and get some anti-depressants this next week and go back to my psychologist. I am finding the whole thing very difficult. Have no support at all here. Just want to talk to someone else who is going through something similar.


Deb54 2009-03-29 22:23:40 -0500 Report

Melanie. Sorry it took so long to answer, I've been in the hospital almost two months thanks to infection in the broken bones of my right foot. I have a wonderful Doc, he removed only half of the foot, most would of taken the whole thing. About three years ago I had to have part of the left foot removed. I'm also going to hyperbarics as well. When the foot is completely healed then I'll get the prothesis and have to learn to walk again(at54). Be extra cautious of your feet, watch for any thing unusual and go to the doctor. Write to me anytime, this is not a condition you can heal, but it is one you can learn to live with and adjust too.
There's not a lot of support here either, it's too rare. But if you need to talk, I'm here. And don't worry, mine is a worse case scenario, it's rare to get it in both feet. Deb

Richard157 2009-01-19 16:37:00 -0600 Report

I know a couple of people with Charcot Foot disease. the following post was made by the wife of a diabetic with charcot foot. He had surgery and is now walking and has returned to his job. He wears a special kind of shoe. Here is her post from another site:

Incidents of This Complication Are on the Rise!

Four factors are considered to be necessary in order for Charcot arthropathy to develop:
(i) peripheral neuropathy;
(ii) unrecognized injury;
(iii) continued repetitive stress on injured structure; and
(iv) increased local blood flow.

People with diabetes are at risk of getting a rare foot complication called Charcot foot. While rare, the number of people developing Charcot foot is increasing according to a recent press release. All diabetics should be aware of the symptoms so that they can seek immediate treatment for this rare foot disease.

Millions of Americans have diabetes. Few of them are aware of a potential complication called Charcot foot. While current research estimates that approximately one percent of diabetics contract Charcot foot, the number of incidences continues to rise. As the number of people with diabetes increases, and the American population ages, physicians expect this once rare disease to become more common.

Many diabetics suffer with complications of diabetes that affect their feet. Charcot disease affects diabetics, usually without them even realizing they have this disease. It happens when the bones in the foot suddenly become soft. It is usually caused by nerve damage to the foot, or severe neuropathy.

Charcot foot can cause a host of problems. A few of the complications of Charcot foot include easily getting foot fractures, having ulcers, collapse of their foot arches, developing a deformed foot, needing to have the foot amputated, or even death. Some people are unable to walk on their foot when suffering with complication from diabetes.

While you cannot reverse the damage caused by Charcot foot, the destruction that it causes can be stopped with proper medical treatment.

Every diabetic should be aware of the symptoms and seek immediate medical care if they suspect they may have Charcot foot disease. It is particularly important since most people who have diabetes do loose the ability to sense changes in their foot.

Symptoms of Charcot foot can appear overnight. Some of the symptoms include:
One foot feels warmer than the other and is warm to the touch
Redness in the foot
Pain or soreness in the foot
Swelling of the foot

If you have any of these symptoms, please seek immediate medical attention. These symptoms could indicate Charcot foot, or other medical problems that necessitate immediate medical care as well.

"More people with diabetes, their families and their care providers need to know about Charcot foot. When I diagnose a patient with this complication, I telephone their primary care doctor and educate them about it as well," said J. T. Marcoux. DPM, FACFAS. Marcoux is one of the few Massachusetts foot and ankle surgeons who perform reconstructive surgery for Charcot foot.

Sources: … t-foot.htm

Deb54 2009-01-26 02:07:55 -0600 Report

Most primary physicians know very little to nothing about Charcot, so it's important to see a podiatrist at least once every six months to a year. Get your toenails trimmed by a podiatrist, it's a lot safer than doing it yourself and they can watch for any symptoms of Charcot as well.

Deb54 2009-01-28 23:38:06 -0600 Report

The problem is, as with any illness, not everyone has textbook symptoms. Also, my Charcot was caught early and even though I have a doc that definetly knows what he's doing and did everything he could, mine still progressed to the point where I have trouble walking, along with a host of other problems. I'm in a W/C now(unable to drive, I call myself a house prisoner). If you have diabetes, get a good podiatrist who's well versed in the knowledge of Charcot, watch for the known symptoms and any other unusual problems that might develop.

GabbyPA 2009-01-19 15:08:39 -0600 Report

I was reading about it and wondered if it was Charcot Marie Tooth Nuropathy? When I looked it up, that is what came up, but it affects the muscles?

Deb54 2009-01-26 02:23:46 -0600 Report

There are several different types of Charcot and they are not all related to diabetes. Some do affect the muscles but diabetics usually have the kind that affects the bones of the feet. You can have a fracture without knowing you have it or how you got it. Watch your feet for any deformities such as lumps along the sides of the feet, redness and warmth in that area or what's called "rocker foot", that's where the bones collapse and fuse together on the bottom of the foot, giving it the appearance of a rocker. Charcot can cause a lot of problems. so monitor your feet everyday for anything unusual.

highlandcitygirl 2009-01-14 17:00:19 -0600 Report

deb, is this what is wrong with your foot? i looked it up! how bad has it become and is there anything to be done for it?

Deb54 2009-01-18 02:21:12 -0600 Report

Nothing can be done for it, except a lot of prayer. What gets to me the most is the pain and not being able to get up and do anything, it makes me feel worthless. I've raised six kids pretty much by myself and been a nurse for twentyfive years, so I'm used to being the one that nurtures. They always use the pain scale of one to ten, my pain on just a normal day is usually a six, I adapt my life around that.

Meridian - 26751
Meridian - 26751 2009-01-14 06:53:00 -0600 Report

Please explain what Charcot is.

Deb54 2009-01-18 02:11:26 -0600 Report

Charcot is a condition where the bones(anywhere you have it)will deteriorate and collapse, then those bones will fuse into a solid mass. Some people get what's called "flipper"foot, where the foot can no longer support your weight, then it's usually time for an amputation. The bad thing is that there is no cure for Charcot, you can only hope it remains stable. Mine was until about a week ago, now I'm having a flareup and it can cause some pain.

woodstock 2009-04-12 07:20:56 -0500 Report

I have been told that I have charcot foot. It started with a fracture of one bone in my foot. I had to wear a boot cast for two months. The xray showed the fracture had healed,but the foot was still swollen. Doc told me thats normal and would go away in a couple of weeks.Four weeks later,still swollen and a lump starting to form on the inside of my foot. my pc doc sent me for an ultra sound on my leg to check for colapse vein, or blood clot. that came out neg.So my doctor sends me to a podiatrist. He tells me that I have chorcot foot. It took me three months to find out what was wrong. Now I'M seeing a docter in boston ma.( beth israel medical center).He says that the bones in foot have collapse down and that i need reconstuction surgery,which involes screws and rods. The risk of infection is the scary part. Because that could mean amputation of my foot and leg, but i guess i don't have much choice. I am told that I have to wait 6 to 8 weeks before surgery. this is along time to think about whats going to happen afterwards. I can only hope for the best

Richard157 2009-04-12 10:31:56 -0500 Report

Woodstock, are you familiar with this information? You may have seen it on other threads or other websites.

For everyone following Charcot Foot threads, I wanted to post an article about Brent Bernstein, DPM, FACFAS the surgeon who took care of my husband. Bernstein is a phenomenal man and went out of his way to show us that he cared about hubby and I both. When his name is mentioned in medical circles, it is with awe by other doctors and patients alike yet this man is the most humble person I've met.

His philosophy:
“Wound care and podiatry mirror each other,” Dr. Bernstein says. “Where once it was said ‘People with diabetes don’t heal’, we are now seeing amazing results in wound healing with advanced dressings. The same holds true for advances in reconstructive foot surgery. Charcot patients used to be treated using simple offloading and we would watch them slowly fail because of a chronically swollen foot that eventually becomes ulcerated and infected. Worse yet, many patients with diabetes presenting to the emergency room with a big, red angry-looking foot characteristic of Charcot would be misdiagnosed as having cellulitis, abscess, or infection and an inappropriate amputation would occur. Hopefully, those days have ended. My fellowship showed me we can reconstruct the damage and subsequently the patient’s outlook.”

Read the full article here:

Description of Charcot foot:

Posts by my husband and I about his struggle with Charcot and surgery by Bernstein. (Note: Contains pictures of his foot post surgery.)…1bdab7b...

Latest article by Bernstein and his head nurse John Motko. (Note: Contains photos.)
Developing a Comprehensive Diagnostic and Treatment Plan for Charcot Neuroarthropathy Part 1 & 2 ( February and March '08 )

Bernstein's Bio:…&sort=3...

woodstock 2009-04-12 19:33:43 -0500 Report

Thankyou richard157, the imformation you provided has help me handle this problem a little better than before. again Thankyou, woodstock.

Deb54 2009-04-12 20:41:41 -0500 Report

Woodstock, this whole Charcot thing is usually misdiagnosed by primary care docs. but a good podiatrist can spot it immediately. Watch your feet closely andif you ever need the best foot doc, I know him. Deb54

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