Charcot Foot: A Story of Foot Reconstruction

Before and After

| Oct 11, 2007

Josephine Kulman has had type 1 diabetes for 45 years, ever since she was five years old. For much of her life, her blood sugars were rarely in control.

Before she went on the pump a few years back, her A1c used to hover around 10%, and she'd often drag herself to work with blood glucose levels of up to 600 mg/dl.

In her forties, it all started to catch up with her. She got gastroparesis, lost vision in one eye, suffered a left-foot ulcer, and developed carpal tunnel syndrome and kidney problems.

On December 8, 2006, while walking in Manhattan, Josephine tripped. Three days later, she couldn't get her right shoe on. Looking down, she was appalled to find that her right foot was three times its normal size. In mid-December she entered the hospital for tests to discover why her foot was so inflamed.

Cellulitis was suspected, but eventually x-rays revealed that Josephine had Charcot foot. "My foot was shaped like an S," she says. "My ankle bone on the inside of my leg was underneath my arch. The one on the outside of my leg was in front of my foot. My foot was split from the big toe straight up, so half of my foot was going one way and half of it was going the other way."

Charcot foot is a softening of the bones of the foot that occurs in people with severe peripheral neuropathy. Their muscles lose the ability to support the foot, leading to a slackness of ligaments, dislocation of joints, damage to bone and cartilage, and deformity.

The bones slip out of position and then push on the soft tissue, breaking it down and leading to ulcers. The patient, unable to feel the pain that warns healthy people of injury, continues to walk on the broken foot, exacerbating the damage. That's exactly what happened to Josephine.

Amputation has always been a very real threat in cases of Charcot foot. But Josephine's story has a different ending, largely because she was fortunate enough to come under the care of Dr. Andrew Sands. Dr. Sands, the chief of foot and ankle surgery at St. Vincent's Catholic Medical Centers in Manhattan, is one of an innovative group of surgeons who is breaking new ground in the treatment of Charcot foot.

Dr. Sands was inspired to help people with diabetes by his cousin, who had type 1 diabetes and died at age 38 from a heart attack. "I went through everything with him," says Dr. Sands, "including partly amputating his foot." As a result of his cousin's influence, "I stay involved with diabetes and do new and exciting things for people with diabetes to save their feet."

In the past, says Dr. Sands, "people were very afraid to operate on diabetic feet, and a lot of people treated them in casts or in bulky boots or shoes. Wound care centers can treat the ulcers, but if the bone malposition isn't addressed, the foot is going to break down again the instant the patient starts walking on it again. More and more, people like me are operating on them and fixing the deformities. We're developing new and better implants, which are metal screws that fit inside the bones. Basically, it's like when a foundation collapses and then the walls start collapsing. You can shore it up with implants and allow the patients to keep their foot. Suddenly, a lot of people who before would have become wheelchair-bound or had an amputation are staying active on their own feet."

In Josephine's case, says Dr. Sands, "her forefoot was basically swept away from the rest of her foot. One row of bones 'bayoneted' over another row, shifting up, over, and on top of other bones. To get that back into alignment, you have to bring it all down and hold everything with screws. We took her forefoot and brought it around and lined it up again, and put big stainless steel screws through her bones to hold everything. The most important screw, which was about 4-1/2 inches long, went from the base of her big toe up into the big bone under her ankle. We recreated her entire arch."

These new operations are the product of a change in philosophy over the past ten to fifteen years, away from conservative treatments like casts and boots and toward more aggressive reconstruction. The trend has been fueled by advances in technology.

The older implants were too bulky to work well in a foot, but now the screws have been redesigned, says Dr. Sands, "to have a smaller head and a stronger shaft, so that they are strong enough to use in a foot, which bears the entire weight of the body."

"It used to be," says Dr. Sands, "that if someone had a terrible deformity in their hind foot or their ankle, the only option was to amputate. Now we have new implants that we can put through the heel and up through the sole of the foot, and we can lock the foot to the leg and save the foot. Sometimes the heel bone is still intact and the bones around it are destroyed, but now we can fix it."

Dr. Sands emphasizes that to benefit from foot reconstruction, patients must be "good partners" in the process. They must have good control of their blood sugar, and they must definitely not smoke.

"If you have a foot ulcer and you smoke," says Dr. Sands, "stop. If you're not a smoker and you have good circulation, if your foot is warm, then chances are strong that we can at least try to save your foot. Even if you have numbness up to your knee, as long as you have good circulation, we can get you to heal."

With regard to smoking with diabetes, Dr. Sands is adamant. "We guarantee very little in medicine," he says. "But to the degree that it is possible to guarantee anything in medicine, I can guarantee that if you have diabetes and you are a smoker, you will have an amputation. It's just that bad." Stop smoking, he advises, and then "keep your hopes up and keep your health up, because we're going to be able to do a lot more" when it comes to saving feet.

As for Josephine, she will be required to wear a special boot for about six months, but she expects to be fully healed once the boot comes off. Her best advice to people with a similar dilemma is to find the very best doctor they can.

"That was the key," she says. "It took time to get to Dr. Sands, but nobody else would have even considered doing a foot reconstruction. The foot would have eventually healed in an S shape, and I would have had problems for the rest of my life."

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Posted by Anonymous on 25 October 2008

Reading this article was very timely for me. I do not have diabetes, but I do have peripheral neuropathy in both feet (called idiopathic since they do not know the source). Similarly to the patient mentioned in the article, I fell, they diagnosed it as a bad sprain, and put me in an ortho boot. 3 weeks went by and it got worse, I was told it "took time to heal." A few more weeks later the top half of my foot was veering outward, so I went in again and this time they sent me to a podiatrist who immediately recommended surgery, the diagnosis being "Liz Frank syndrome". I had the surgery in April of 2008, which included fusion, 2 plates and 7 screws. It is now October 2008 and after all this healing, one of the screws broke and my arch has fallen. I sought a 2nd opinion and was told that I now have "Charcot foot". The dilemna I am now faced with is that one doctor recommends NO surgery and the use of orthotics, while the first doctor would like to do reconstructive surgery and triple fuse areas of my foot to better align it, then follow up with orthotics. So far I have made a tentative decision to proceed with the reconstructive surgery, but would like to know what others might do if faced with my situation (I am female and 50 years young) and welcome any suggestions, opinions, and/or 'stories' that others may have and are willing to share.

Posted by Sage333 on 25 October 2008

I have had bilateral Charcot foot for the past 8 years and am recovering from my 5th surgery (3 on left foot, 2 on right foot.) My doctor at Loma Linda University in southern California treats Charcot aggressively with surgery. I set off metal detectors all the time. Looking forward to meeting others who are living with Charcot for mutual support. Blessings.

Posted by Anonymous on 30 October 2008

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Posted by jandersonrn on 2 November 2008

I am 49 years old and not a diabetic. I got a slight case of polio form the vaccine as a child. It only affected my right calf muscle. As a result I had bad drop foot and had 3 of my ankle joints fused when I was 17. Lived my life normally for 25+ years until had back-to-back injuries in 98 and 99. Since then pain in right ankle getting worse & worse. Thought I had an infection-so had needle biopsy in 11/07-negative. But after that foot became more and more deformed, now inner ankle bone scrapes floor & they tell me I have Carcot foot. Need a GREAT doctor who is very knowledgeable-have been getting jerked around by drs here. I have 3 young children and am desperate to be able to walk and do things with them again! Anybody who has any suggestions or can help-PLEASE contact me. Thank YOu.

Posted by Anonymous on 16 November 2008

Very knowledgeable in charcot reconstruction etiology and treatments.
Dr. William P. Grant, DPM FACFAS
Virginia Beach, VA. Specializes in Diabetic foot and ankle reconstructive surgery.
Worth a visit...

Posted by stampinit on 16 December 2008

I would like to contact Sage333 as I have Charcot's foot and feel the treatment I have been receiving has not helped. I live in the area of Loma Linda Hospital.

Posted by hope2008 on 21 December 2008

I was diagnosed with Charcot's foot last week and since that time I've had a CAT scan and doppler test done on my legs and feet. I will be returning to the doctor next week to find out what actions he will take. I'm just scared! The anxiety of what's to come is overwhelming. I am my only supporter and must work. If an operation is done, how long does it usually take to recover. Does anybody know. Will special shoes and orthondics be used for the rest of your life. I appreciate any input you have.

Posted by hope2008 on 21 December 2008

I was diagnosed with Charcot's foot last week and since that time I've had a CAT scan and doppler test done on my legs and feet. I will be returning to the doctor next week to find out what actions he will take. I'm just scared! The anxiety of what's to come is overwhelming. I am my only supporter and must work. If an operation is done, how long does it usually take to recover. Does anybody know. Will special shoes and orthondics be used for the rest of your life. I appreciate any input you have.

Posted by Medtrans11 on 29 December 2008


Posted by Anonymous on 4 February 2009

I just found your post and this forum because I'm at quite a low point and was searching the internet for help. It's after midnight. My left foot has made my life hell.

In the last year since being diagnosed with Charcot's December 2007, I have endured wearing a plastic CROW boot, a fibre caste applied top tightly that gave me a diabetic ulcer on top of my foot after 5 days and I ended up on IV-AB in hospital for 2 weeks, coming out in a wheelchair.

I'm back in my plastic CROW boot again now, minus the wheelchair. My first orthopod said I'd be in the CROW boot for 1 - 2 years, but the one from the hospital says I have to wear it for the rest of my life if I want to keep my leg. I am only aged 49 and the prospect of being told this, is devastating to me. I have had type 2 diabetes, diagnosed 23 years ago. Bilateral PN for about 10 years.

Ankle and feet problems for approx. 6 years, which I can now determine were early warning signs of charcot's. Swollen ankles and legs for about 2 years which were misdiagnosed as "fluid" problems. My left foot fell apart due to a minor foot trauma while sailing in Oct. 2007, walked on it with multiple bone fragmentation for six weeks, and now have a deformed foot.

Hardly any specialists here (Brisbane Australia) knows what to do other than say - just keep wearing the CROW so you don't have to lose your leg.

Have not been sailing for six months now. I feel I am at a point of dispair. I don't sleep well anymore and am depressed. I'm going to go and get some prozac as soon as I can.

Melanie, Australia.

Posted by Roberta on 16 February 2009

I am a 62 year young female who has had diabetes for about 20 years, 16 of which were unfortunately uncontrolled.

One busy day at work in July 2008, my foot became swollen and too painful to walk on. There was no warning or obvious symptoms of a problem, much less broken bones.
Having had several foot problems in recent years due to diabetes, I immediately saw my podiatrist. (Now, this man has gotten me through extremely bad,life threatening foot infections and a toe amputation, so I have complete faith in him. Thank you Dr. L Jimenez - Snellville, GA)

He xrayed my foot and saw that several bones in my foot had "crumbled." I was immediately put in a fiberglass full boot, and instructed to place no pressure on the foot at all. NO walking. He scheduled surgery and placed four screws in my foot to stabilize the bones. There was not even an incision!! The screws were positioned right through the skin. The procedure was done under light anesthesia and took an hour start to finish. I was in a hard cast for 4 1/2 months and could not walk during that time. After being in the cast with no walking allowed, the muscles in my leg weakened a great deal and it has taken a while to regain normal strength. Now, at six months post surgery, my foot is healing as hoped. Doctor said after one year of healing, he will consider the surgery a complete success.
I was off work from late July until mid-November. I should not have rushed the return to work and should have given myself a few days to get used to being up and around. It was difficult and tiring to return to work. I could not even drive myself to work, as it was my right foot that was injured. Walking, even in a special surgical shoe was painful.
Still, I would highly recommend this procedure. It was annoying to be off my feet for the 4 1/2 months, but well worth not having an amputation or having to be in a wheelchair the rest of my life. I don't even have a scar on my foot.
If your doctor is not up to date in proper care for this condition and doesn't want to recommend this level of care, run (no pun intended)to a more progressive specialist. Good Luck.

Posted by Anonymous on 24 March 2009

I had a mid foot fusion for charcots foot 7 months ago. They used donor bones and no screws were left in my foot, I had and external fixator on my foot for 3 months and was stuck in bed but the fusion healed great and while I still have a long way to go after being inactive for a year the foot feels pretty good.

Posted by Anonymous on 6 April 2009

I found out that I had charcot foot 5 years ago and I couldn't find a doctor to help me. Every doctor I saw put me in a boot and put me on my way. Last year we moved to another state where I have this great foot doctor and he is ready and willing to do surgery on it. I have problems though. My last A1C was 8.8 so they want to wait until that goes down. They say they are worried about my kidneys going into failure because my kidney numbers are too high. I'm so scared. My primary care doctor says to wait because those numbers are too high but my kidney doctor says just do it. I'm affraid I will die on the operating table. I'm only 35 and have 2 kids. Do I get another opinion. Help if anyone else is in this same situation please help me any advise would be nice. Thanks

Posted by brbrbts on 8 April 2009

As a 62 year old female with diagnosed diabetis Type II for about 7 years, I have had good control of my blood sugar with A1C test results at 6.0 down to 5.5. So why am I looking at a diagnosis of Charcot foot? My doctor has ordered a bone scan of my left foot. Like hope2008, I am scared of the prognosis--what comes next? My doctor is trying to be conservative about his apporach but is almost certain foot surgery is in my very near future. This next week will be very difficult for me. I had never thought this could happen especially with good control of my blood sugar levels.

Posted by jkphelps on 17 April 2009

I was diagnosed 3 1/2 years ago with Charcots. I went to 2 orthopeadic surgeons one from my little county and one from Philadelphia. They said nothing can be done. I broke my foot a 2nd time in Jan. 2009. I am recovering from 2 surgeries in which they used a halo type device to reconstruct and put all the bones back into place. A bit of advice for anyone searching for surgery for this condition go to a podiotrist that specializes in foot and ankle surgeries.
Dr. Guildo Laporta in Dunmore, PA is well known and is my doctor. I highly recommend him and his staff.

Posted by Anonymous on 19 April 2009

Has anyone heard of "Liz Frank Syndrome" relative to a broken foot?

Posted by Anonymous on 21 April 2009

Reading the stories above helps me have hope for my 55 year old husband who has been diabetic for 20 years. To make a long story short we are in Louisiana and on Medicaid and need to fine a doctor in Louisiana who would be willing to look at his foot and determine if he is a candidate for this procedure. If their is no one in Louisiana is there someone that will consult and tell us the cost of this procedure. He so wants to get back to playing his music and teaching kids again. Please help.

Posted by Schipperke on 25 April 2009

Dear Anonymous on 6 April...
If your kidney specialist says "just do it" then I'd press your other doctors to follow that advice unless there is a worry that you won't heal. You aren't especially likely to die on the table from what my own kidney guy is telling me. So go for it if it is going to offer you better quality of life...

Posted by flosemae on 25 April 2009

I have had charcot foot (left midfoot)for one year and the right foot went undiagnoised and is severly deformed..I wore a fibroglass boot for 6 months and am in an Arizona brace right podiatrist tells me that I am at high risk for surgery.This condition is horriable...does anyone with charcot have severe weakness in their legs? I do..I am overweight and trying to get that under control..I know of a man on another forum that had the reconstruction done..the surgery was great .. He had pins and screws and after 6mths his foot went back into charcot and now he is back into a boot..I was told that the surgery could throw you back into charcot and you could loose your foot from that...I pray everyday for someone to create a surgery to correct my left foot..I am told I will be in the Arizona brace for the rest of my life...please keep posting to this forum with anything positive...thanks

Posted by Anonymous on 27 April 2009

I have had peripheral neuropathy for many years. I have a spinal neurostimulator which has saved my life the past 3 years --seriously! I am a "just over the line" diabetic -- diet controlled -- and have been moving over into Charcot-land for the past few years. My left foot has recently collapsed completely and I have a "ski boot" for now. My pod-guy hopes to operate and "rebuild" my foot. I have had a Doppler ultrasound and my blood flow is fine. I have been determined to have A-fib and I'm waiting for a cardiac work-up to see if this will be a problem. I also have bad shoulder problems and I will be getting a motorized wheelchair this week. I'm determined that I won't give up any of my music activities -- thank goodness marching band isn't one of them -- so I'm looking forward to being more mobile right away. I've had many ortho-surgeries (2 knees, shoulder, back, neck) and I'm definitely not looking forward to this one. Please let me know what level of pain I can expect and how long I will probably be "off-foot". I'm anxious to connect with others who have gone through this.

Posted by Anonymous on 3 May 2009

I was diagnosed with Charcot's foot about 5 months ago. Was in a boot first, now a shoe with a brace for 3 months, My orthopedic doctor told me that there is nothing more to be done, that surgery is too dangerous, and causes infections, and eventually I would lose my foot. I may be 72, and 40 -50 lbs. overweight, but am energetic, and was very active. Now am in pain, have neuropathy, and possibly Diab. 2, Am a retired nurse, and want to find someone that can help me.
I am really getting worried about my feet.
I wonder, if my other foot will develop this, because I had sprained it, wore A fiberglass brace, and now it is turned outward, like someone in a previous story.
This is all new to me, never had heard of Charcot's as a nurse in a hospital.

Posted by flosemae on 7 May 2009

To the retired nurse worried about the other foot...I am also a retired nurse and the reason I had to retire was due to Charcot...first time it was in the right foot after I broke it and it is turned outward and shorter than the other foot one diagnosed it so it ended up deformed like is 1 and 1/2 sizes shorter than my left foot...then I broke my fibia in the left leg near the ankle and it is now deformed due to midfoot charcot in it..I am 56 years old and my podiatrist says I am to high of a risk for the surgery also...I wear an Arizona brace on my left foot so I will not twist my ankle ...It is really bad if you develope charcot in the ankle..I wish I had more to tell you but this I do know ..You can develope Charcot in both feet and ankles and it can relapse..So please protect your feet and ankles ... do not injure your feet or legs...and pray someday they can cure for this thing...I hope and pray for the best for you...I am also about 50 lbs overweight and can not walk long distance...please,if you are not seeing a podiatrist, do so ...if I had done that before My feet my have not been as deformed as they are now...don't fell to bad about the surgery...I am told and I do know someone who had the surgery and it threw them back into Charcot after surgery...I would love to know what kind of nursing you did....I was a charge nurse for a cancer and diabetic floor for 30 years and believe it or not I miss it....Thanks

Posted by Anonymous on 21 May 2009

I am so happy that I found this site. My husband was diagnosed with Charcot foot about 4-5yrs ago. He has Type 1 diabetes since the age of 13. All was well relatively until he hit 40 or so. Then it seems one system after the other started breaking down. He was fortunate enough to get a kidney/pancreas transplant in 1992. The kidney failed after 16 yrs. He is now doing home hemo dialysis.

Charcot foot has been the most debilitating diagnosis for us to deal with. He can hardly walk. Like another poster he is a musician and although he still hobbles to gigs, it is very stressful. He has worn the boot, brace, etc. He now wears an orthotic. He also has a hammer toe on the same foot. I can hardly watch him come down the heart stops every time I see him walk. But he is determined not to let Charcot stop him. I fear that eventually he will be in a wheelchair.

Posted by flosemae on 25 May 2009

I am so sorry about your husbands diagnois..I know it has to be hard on you to watch it does my family to watch me struggle to walk anywhere...I sometimes feel that something else has to be wrong with my legs as the muscle weakness is severe but I know it is the charcot..there is a dr. name Bernstein that is doing surgery on alot of charcot...if you go to the site dLife and go to the forum OWWW My Foot there you will met a man name Marty and his wife and there story and his surgery on charcot by this Dr. he is doing well...good luck to you and your husband..if you will please let me know (on this site) if your husband feels weakness in his legs...thank you Kathy

Posted by GABRIEL M, on 9 June 2009

lm 50 years young. about 20 years with diabetes. can'T control it. l'm always over 250 in sugars level. I was diagnogtic with charcot foot 16 months ago. and im getting worse day by day. I DO NOT RECOMMEND surgery to anybody. it is very hard to recovery 3 to 5 months on a wheel chair after surgery..need to learn to walk again and if you get an ulcer and do nor hill may lead to foot amputation,,,,just learn to live with it. there is special shoes that will help alot. also good foot care...

Posted by Anonymous on 10 June 2009

Sorry to hear you are having such a hard time Gsbriel...the hardest thing I have is trying to walk any long into a ball seems like my legs cannot carry me...the muscle weakness is terrible..but I have charcot in both ulcers..thank the Lord...I am wearing an Arizona brace on the left foot and shoes are real hard for me to find...but I am trying to live with it...but I hate Charcot....

Posted by Anonymous on 6 November 2009

This article was very informative; it prompts the reader to seek more in-depth and technical information on treatments for the diabetic foot. It also is a source of hope for people who have or will have this condition and it is makes a very strong point for the diabetic patient to cease smoking.

Posted by 37 year diabetic on 18 April 2010

I have just been diagnosed as having Charcot's Foot. I would like to be directed to a specialist in Orlando or other central Florida location that can confirm and evaluate the extent of damage and suggest treatment.

Posted by Anonymous on 27 April 2011

I've had type1 diabetis for 38yrs.last year Iwas diagnosed with charcot on my right foot I have never smoked I would like to know if this operation is done in the UnitedKingdom

Posted by Anonymous on 28 August 2011

My girlfriend suffers from this condition. Her foot has completely changed shape and she uses special footware to walk.If we were near, we would contact this specialist, but we live in Europe. Where in Europe can we get help? Particularly, does anybody do this reconstruction job in Malta?

Posted by Anonymous on 7 October 2011

I went to a podiatrist in June 2011 as my foot was very swollen. He took xrays and after looking at them told me I had Charcot foot. He ordered me special shoes(New Balance) and fitted me for inserts. After wearing them 3-4 times I told him I had a problem with them that my right foot (the one with Charcot) kept rolling to the out side. He was more worried about my toenails he removed. This went on until the middle of August when he took new xrays. Then set me an appointment for 3 weeks. I came back in with my husband and as he was looking at toes he had removed the nails from I asked what are we going to do with my foot as it was still swollen and it hurt worse. Well let's take a look. I told him now when I walk my foot crunches. I asked what my last exrays said, he told me he had never looked at them. He left the room and was gone about 10 mins. He came back in and asked if I had a boot for my foot I told him no(the first visit he said it wouldn't be of help he told me to get a walker to take weight off it). He then wiggled my foot around and then said, you're going to a specialist? I said yes and he said ok and left the room. He didn't even make a new appointment for me. Between the two visits with him I went to a orthopaedic doctor who took a set of xrays, looked at them, came back in the room and told me I had charcot foot and said I may need to have it amputated, so he sent me to a bone specialist. I have an appointment next Tuesday. Please, please, please don't trust your foot to a podiatrist, please, please seek the services of a bone specialist.

Posted by Anonymous on 30 October 2011

I would really like to know where Dr. Sands is located. If anyone knows can you help me out? Thanks in advance.

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