Charcot foot disease

Richard157
By Richard157 Latest Reply 2011-10-18 18:26:31 -0500
Started 2008-11-03 12:30:36 -0600

I have a friend whose husband has Charcot foot disease. It is becoming more common among diabetics. We feel that diabetics should become familiar with the disease. Here is her message from another site:

My husband had surgery this past August 11 for Charcot foot. His symptoms first appeared in November of 2007. He was in fiberglass casts but his foot never left the acute phase. His doctor tried "CROW" boots (see below) and that didn't help either.

Since his surgery, he has been in an external fixator and now a non-weight bearing cast. This Wednesday my husband will be put into a walking cast for 2 weeks. At the end of the 2 weeks, he will be measured for orthopedic shoes and then re-casted for 2 weeks while his shoes are being made. If all goes well, he will be back standing on his own two feet in early December.

I've posted an article below that I was directed to when my husband was diagnosed. If you have any questions after reading it, feel free to ask…I'll answer what I can! It's my goal to get the word out about Charcot - it took my husband 3 months and 4 hospital visits (3 of which he was admitted) until we received a diagnosis! He had tests for blood clots, infection, lymphatic system problems and cellulitis. He had countless x-rays, blood tests, and an mri. To diagnose Charcot, the doctors need to do a bone scan which will show the smallest of fractures.

Surgery is often the last plan of action to heal a Charcot foot. Most doctors will try casting or "CROW" boots. Patients must use crutches, a knee walker, or a wheelchair to move about. Keeping weight off of the foot is the #1 rule.

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:

http://en.wikipedia.org/wiki/Neuropathy

http://www.footphysicians.com/footan…a...


35 replies

Tj12761
Tj12761 2009-05-20 06:15:58 -0500 Report

Pauline, Read the articles I mention here, if you have any questions, feel free to ask! If I don't know the answer, I will ask Dr. Bernstein.

Thanks to posts like this Doctors are becoming more aware of Charcot and there are many out there who now the symptoms and how to care for it. Surgery is becoming more common to repair and not amputate.

Dr. Bernstein has a patient driving 2,000 miles from Canada to the US for reconstructive surgery on her feet.

Sherlij, Charcot Marie Tooth disease is a different condition. That one, as you said, is genetic. I'm glad to hear the MS Foundation has finally included it in their study and funding!

Charcot Arthropathy, which is being discussed here, is due to diabetic neuropathy and causes the bones to soften and break. Please note folks that Charcot can happen in other bones, not just the feet. While not as common as forming in the feet, charcot can affect knees and wrists too.

Deb54
Deb54 2009-06-04 21:08:39 -0500 Report

Unfortunately, mine progressed so quickly that repairing them was not an option. I could feel bones snapping sometimes weekly, I'm grateful for the wonderful two docs I have. Deb

sherlij
sherlij 2009-03-15 15:50:17 -0500 Report

I have a friend of many year's standing that has Charcot Marie Tooth, a genetic disease, inherited from one of her ancestors and now passed thru her family to an 8 year old granddaughter. My friend is in her 70's, has trouble now walking and standing, using her hands. She told me that now the Multiple Sclerosis Foundation has included her disease for study and help. She is so thankful.

Deb54
Deb54 2009-03-30 23:16:09 -0500 Report

I found out about Charcot the hard way, I developed it, not just in one foot but in both. Thanks to an infection in those mangled bones, three years ago I had to have part of my left foot amputated and two months ago it happened to the right one. I'm still going to Hyperbarics since this one was worse and is healing way too slow. My Doc told me that most primary physcians don't know much, if anything about the condition. Once this heals I can get prothesis and be able to walk again, I'm looking forward to that.
Charcot is something that can put you in a wheelchair before you know it. I was lucky, I have a doctor that only took half the feet instead of the whole thing, most docs would amputate above the ankle or further. If you find out that you have it, find a doc that is willing to at least try to save half of the foot. That may not seem like much, but you'll fight having a part of your body removed, so half is better than all. Deb

myleftfoot
myleftfoot 2009-03-14 18:48:30 -0500 Report

For all those suffering with Charcot's, a work of art that we can relate to:

http://commons.wikimedia.org/wiki/File:%27The...

I saw this recently when visiting the Art Gallery of NSW (in my CROW, AFO, and wheelchair) and was irrestibly drawn to it. Recognise the look on this face? I call it "left for dead".

Melanie

Richard157
Richard157 2009-03-15 08:56:40 -0500 Report

Thanks for the picture Melanie. How are you doing now? Will you be able to get that surgery in some other country? Is your foot any worse?

myleftfoot
myleftfoot 2009-08-25 09:08:42 -0500 Report

Hi Richard

How are things with you. I'm trying to think up jokes about crows, boots, and deformed feet. You know how self-depreciating the Australian SOH is. I just can't think of anything funny yet. DAMN IT! There was some threads with Joyceful regarding a black stump. I thought I could combine it with a crow. I"m working on it. Over and out.

Melanie

Richard157
Richard157 2009-08-26 12:47:03 -0500 Report

Hello Melanie, I am doing very well, thanks! It is wonderful that you can have Charcots and still have a sense of humor about it. That is a very healthy approach! Thanks for chrcking in with us.

Pauline B
Pauline B 2009-02-28 23:28:20 -0600 Report

I was aware of Charcot's foot disease but did not know the strong tie-in with diabetes and neuropathy. Thanks for bringing the condition to the fore-front.

Tj12761
Tj12761 2009-02-28 09:10:56 -0600 Report

We can hope Richard.

Here is an article on Brent Bernstein, DPM, FACFAS the podiatry surgeon who took care of hubby. It's his plan to make sure that all doctors do their utmost to recognize, understand, and properly care for charcot patients. We owe him a world of gratitude and anything I can do to help spread the word for him, I will.

http://www.o-wm.com/article/6241

Tj12761
Tj12761 2009-02-27 18:06:53 -0600 Report

RIchard,

I happened upon 2 podiatry boards recently that have several hundred people discussing charcot foot. I have also begun monitoring a professionals podiatry board and have been chiming in there as well.

With charcot foot being recognized so many years ago, it's sad to see many people struggling to get a diagnosis and how many people receive that diagnosis at such a late state.

For hubby, as you know, it took almost 4 months before we found a doctor who knew what was wrong and that was after being admitted to the hospital 4 times and being seen in the ER two other times in addition to those where he was admitted!

What's even worse, is how many doctors DO NOT recognize the symptoms of charcot foot to be able diagnosis it! Hubby saw at least 10 different doctors during his ER visits and stays in the hospital.

I was just at a book store tonight. I looked through the index in two books on diabetes. One from Joslin and the Mayo Clinic. The Joslin guide had 1 small paragraph on charcot and the one from the Mayo Clinic had nothing about it! Unbelievable!

Richard157
Richard157 2009-02-27 19:23:03 -0600 Report

I can see why that is so frustrating to you Teresa. I hope it improves in the next few years and that there will be more surgeons who will be able to perform that operation.

I am similarly frustrated that doctors know so little about double diabetes. I had insulin resistance for years and my doctor had never heard of a Type 1 with that problem. I suffered greatly and had to retire at the age of 57 because of that. It was two years after my retirement that I was diagnosed and given a medication for insulin resistance. It should not have been that way.

Angelady1
Angelady1 2011-10-17 14:21:20 -0500 Report

i would be very interested in knowing what they gave u to help with insulin resistance?

Richard157
Richard157 2011-10-18 18:26:31 -0500 Report

I used Avandia 1998-2010, then I had to stop because it was causing many people to have heart problems. It did not cause me any problems, but my doctor refused to renew my prescription. For the first 3 weeks of this year I used Actos, but I had swelling in my hands and feet and ankles. I gained 9 pounds. Then I switched to Metformin, and have used it ever since. It works very well for me.

Tj12761
Tj12761 2009-02-13 19:43:32 -0600 Report

The Charcot foot was identified as early as 1703 by English physician William Musgrave and again by the American physician John Kearsley Mitchell in 1831, but it was Jean-Martin Charcot, a 19th century French neurologist, who first described the underlying pathology of the condition that now bears his name. In 1936 Charcot foot was linked to neuropathy as a result of diabetes mellitus.

Yet here it is 2009 and so many doctors continue to rate Charcot as "rare" even though currently 1 in 3 diabetics with neuropathy will develop it!

Richard157
Richard157 2009-02-13 19:58:06 -0600 Report

Oh wow, Teresa!!! 1 in 3??? That is very alarming. I know many people with neuropathy but have read about very few with Charcot. Do you think people with Charcot are unlikely to go online and talk about their Charcot? Is it possible that many have Charcot but so many doctors know little or nothing about and it is not diagnosed as Charcot? Is that why we hear so little about it?

myleftfoot
myleftfoot 2009-02-14 04:11:21 -0600 Report

Wonder why the reported statistical incidence is so low? I've figured it out - there are many many many more people who have Charco'ts but they are just never told. Because they "present" TOO late. If they have arrived at the doctors, with ulcers/infection/gangrene as a result of Charcot's - then there is NO POINT saying "you've got Charcot's" let's treat it. The leg is amputated. So yes, it would be a good idea to get as much information out about this insidious problem asap.

Further to this, I have been advised by a podiatric surgeon and specialist in diabetic foot problems here in Australia, that there is no-one that would be able to operate on my foot here. I can either choose to wear the CROW forever and hope and pray for no complications; take the boot off and end up with a diabetic ulcer + complications; complications will lead to amputation; or get into a wheelchair (my own modality - no-one has actually advised me to do this - but would seem to be a good idea). Here in Australia - amputation seems to be the most common treatment for Charcot's.

Melanie

myleftfoot
myleftfoot 2009-02-04 08:59:24 -0500 Report

Dear Richard157

I also 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.

What is the outcome of your husband's surgeries and orthotic shoes now - is he walking?

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.

Melanie

Richard157
Richard157 2009-02-04 08:47:15 -0600 Report

Hello Melanie, I am sorry to hear about problem. There is a good place for you to go and talk with someone about Charcot foot disease. Join the following site.

http://www.dlife.com

Here is the link to the thread involving Charcot and a man who has had surgery on his foot.

http://www.dlife.com/diabetes-forum/viewtopic...

He has gone back to work and is walking and doing well now. His wife,Teresa, will give you all the information you want. She is very intelligent and enjoys helping peolpe. Good luck to you!

Richard

Tj12761
Tj12761 2009-02-04 09:51:57 -0600 Report

Hi everyone…I'm Teresa - Tj.

Richard, thank you for directing me to this board!

As Richard said, my husband is now recovering from Charcot surgery. I've become an advocate for this topic.

It took us 3 months to get a diagnosis. Doctors told us it was a infection and one doctor even ventured that hubby had "Cat Scratch Fever"! Needless to say after 3 months and 4 different antibiotics his foot was still swollen so we tried yet another hospital and walked into the best care facility for treating Charcot 30 miles from our home.

With the rate of diabetes growing, Charcot foot is becoming more prominent every day. Charcot tends to strikes T1 earlier as they have had diabetes much longer.

At the time my husband was diagnosed, his A1C was 5.8 and he was off all diabetes medications. Level of control does not rule one out for getting this, it's length of time you are diabetic. My husband does have some Neuropathy in his feet.

Any questions, just ask!

Tj12761
Tj12761 2009-02-04 17:00:54 -0600 Report

Let me further explain the symptoms:

1. One foot feels warmer than the other and is warm to the touch - Doctors can use an infrared thermometer to measure the temperature differences between feet. Hubby's charcot foot was 10-15 degrees warmer then the other!
2. Redness in the foot - By the time he was diagnosed, his foot was VERY red with twinges of blue at the toes and the skins was very dry and peeling.
3. Pain or soreness in the foot - Depending on your degree of neuropathy, you may not feel much pain or, you could feel extreme pain. Gabapentin was the medication that helped the most with no side effects. It's not a narcotic but is most often used to treat some types of seizures and for postherpetic neuralgia (nerve pain caused shingles).
4. Swelling of the foot - This is very prominent and your foot will begin to misshape - almost like the letter "C" the size of a football.

CROW boots (Charcot Restraint Orthotic Walker) are custom fit to your foot and leg and offer the best support.
http://www.optecbrace.com/index.asp?page_id=121

There are other supportive footwear choices but the best method of recovery is to not walk on the charcot foot. The CROW is for times when you need to step on the foot (restroom, get into bed, etc.) Doctors will often recommend a wheelchair or knee walker. http://www.kneewalker.com

Our insurance covered a wheelchair not a knee walker and it was easier to get around and for longer distances (to doctor visits, shopping, etc.)

Doctors will not always do surgery and surgery is considered the last resort from many doctors. Surgery was only an option for hubby because he had quit smoking (and was smoke free for 3 years at that point), had his BS under control, had never used Prednisone or any other steroidal medication, and was cleared for the 5 1/2 hour surgery by his cardiologist.

After surgery, where his foot was fused in 3 places, he was in an external fixtor (halo) for 3 months and then in a total contact cast for a month. After that, he was back in the CROW for another month and finally in orthotic shoes with custom-made inserts/arch supports in each shoe. http://www.pedors.com

myleftfoot
myleftfoot 2009-02-05 03:32:19 -0600 Report

Dear Teresa

Thank you so much for all of the information. Like anything, I suspect the disease manifest differently with each individual. For instance, I never had the temp. differences in the feet or the redness. No pain here as no feeling due to neuropathy. However I did have the massive swelling and much fluid build up. Even in my right foot (no Charcot's confirmed), if i do not wear a sports support aircast and orthodic insert to support my arch I have swelling.

I am currently checking all the links you have sent me for information. I have a few of them, as I have googled "Charcot's" to death.

What is of great interest to me is the lack of knowledge of it within the community, medical and diabetic. I just wish I could talk to someone (in person) who has it.

I am so tired of people asking me how my foot is - and "is it getting better". I know they mean well, but I do not want to tell them, "no, it will never get better". Sometimes, I just say "it's a long story" and leave it at that.

Melanie

Tj12761
Tj12761 2009-02-05 05:29:30 -0600 Report

Melanie,

Ask your doctor about the medication Fortical. (It's taken as a nasal spray.) It may help speed along your bone healing.

myleftfoot
myleftfoot 2009-02-14 06:59:51 -0600 Report

Hi Teresa

I was actually given 500ml of Pamisol (Disodium pamidronate) six months ago which was given to keep calcium on my bones to help stop the degeneration and fragmentation. They have said I can have another lot this year. They asked me if I thought it helped, but I said NO, since the 2 xrays I've had since then showed further bone fragmentation and still in acute stage. Seem pointless.

I will enquire about the nasal spray.

Melanie

Petrea
Petrea 2008-11-04 02:19:57 -0600 Report

Wow! I have heard of this but never new what it was about. I've always considered taking off my shoes & socks when I see the dr. every month a chore, but now I'm glad he insists checking my feet thoroughly each time.

Bluebutterfly
Bluebutterfly 2008-11-03 18:19:29 -0600 Report

This was a good artical about the feet. I have lots of trouble with my feet ,ankles and knees.Thias was very informative.

kdroberts
kdroberts 2008-11-03 13:54:57 -0600 Report

Good info. Seems roughly 0.35% of people with diabetes will get this. That's based on the 60-70% of diabetics getting some form of neuropathy and then 0.5% of them getting charcot foot.

myleftfoot
myleftfoot 2009-02-14 04:08:53 -0600 Report

Wonder why the reported statistical incidence is so low? I've figured it out - there are many many many more people who have Charco'ts but they are just never told. Because they "present" TOO late. If they have arrived at the doctors, with ulcers/infection/gangrene as a result of Charcot's - then there is NO POINT saying "you've got Charcot's" let's treat it. The leg is amputated. So yes, it would be a good idea to get as much information out about this insidious problem asap.

caspersmama
caspersmama 2008-11-03 13:43:59 -0600 Report

Wow, thank you for the information. I am going to ask my doctor about this. I have many problems with my feet that I had just thought was neuropathy.