Charcot Foot

[Ashmore69]

I've been diagnosed T2 since 2007 and am now insulin dependent. Four months ago I was diagnosed with Charcot Foot and told I'll be in a plaster cast for anything up to 2 years. I have the cast changed every 2 weeks to check there are no sores developing.
Has anyone else been diagnosed with this condition? Would like to know how you're getting on and how long you managed in a cast. I find it a real life changing condition and often wonder if there was anything I could have done to avoid it.

Stuart

 

[catherinecherub]

I will tag @Flowerpot as she has Charcot Foot, she may be able to answer your questions.

 

[Flowerpot]

Hi @Ashmore69

I've had Charcot Foot for about 18 years now. It is a devastating complication that causes bone fractures and joint collapse due to peripheral neuropathy in the feet and ankles and is as you rightly say a life changing condition.

My advice is to be be very patient - very hard I know - and follow the advice the podiatry/orthopaedic team give you to the letter. Presumably the bones in your foot have collapsed and that is why you are in a cast? In the initial stages of Charcot the foot is held in a cast to protect the bones from further collapse and to try and prevent too much deformity. I was initially in a below knee cast for about 2 and a half years, non weight bearing for about 1 year then progressing to partial weight bearing.My mid foot collapsed first leading to a very deformed foot shape and my arch collapsed leading to a rocker bottom on my foot - where the arch should go up mine goes down.This leads to weight being put through all the wrong parts of the foot increasing the chance of blisters and ulcers.

You need to be forever vigilant about cuts, sores etc on your foot and get any changes looked at as a priority.Diabetic feet are vulnerable anyway but a Charcot foot is a serious ongoing problem even once the initial destruction of bones has ceased. I can't get ordinary shoes on due to the bones projecting at odd angles from my foot so go to the orthotics department for shoes. At present both my legs are in casts due to ongoing fractures but I have been told this is a very unlucky thing to happen and it is by no means the normal progression.

Elevated blood glucose over a long period leads to peripheral neuropathy and any tiny trauma to the foot can lead to microscopic changes to bones which due to diminished feeling and perception can cause the initial trauma to escalate to bone fracture and collapse. It is luckily - although no comfort to us -a rare complication and just because someone has neuropathy does not mean they will get Charcot Foot.

I wish you well with your ongoing treatment. It is certainly a painful, long haul but I hope you reach some stability where you can move out of a cast into a protective boot then hopefully into some customised shoes to protect the areas of your foot that are most vulnerable. Above all don't despair, it is manageable with optimal blood sugar control but is a real challenge to live with. Good luck.

 

[Brunneria]

I am sorry, @Flowerpot and @Ashmore69

I know what Charcot foot is, as a long term result of high blood glucose, but it is only reading Flowerpot's post that i realise what a dreadful condition it can become on a daily basis.

You have my sympathy and best wishes for ongoing good bg control.
Does maintaining good bg control prevent the condition from progressing?

 

[Flowerpot]

Charcot foot can unfortunately flare up again at any point down the line although not definitely and can occur in both feet. Apart from ongoing vigilance with the skin and pressure points on your feet and acting swiftly if something does go wrong, keeping tight glucose control is about the only thing you can do as you would with diabetes generally although in my case even with an HbA1c of 6.2% for the past few years it hasn't stopped further fractures. It is one heck of a challenging complication!

 

[Ashmore69]

I will tag @Flowerpot as she has Charcot Foot, she may be able to answer your questions.

Thank you for tagging her. Just seen her reply.
Stuart

 

[Ashmore69]

Hi @Ashmore69

I've had Charcot Foot for about 18 years now. It is a devastating complication that causes bone fractures and joint collapse due to peripheral neuropathy in the feet and ankles and is as you rightly say a life changing condition.

My advice is to be be very patient - very hard I know - and follow the advice the podiatry/orthopaedic team give you to the letter. Presumably the bones in your foot have collapsed and that is why you are in a cast? In the initial stages of Charcot the foot is held in a cast to protect the bones from further collapse and to try and prevent too much deformity. I was initially in a below knee cast for about 2 and a half years, non weight bearing for about 1 year then progressing to partial weight bearing.My mid foot collapsed first leading to a very deformed foot shape and my arch collapsed leading to a rocker bottom on my foot - where the arch should go up mine goes down.This leads to weight being put through all the wrong parts of the foot increasing the chance of blisters and ulcers.

You need to be forever vigilant about cuts, sores etc on your foot and get any changes looked at as a priority.Diabetic feet are vulnerable anyway but a Charcot foot is a serious ongoing problem even once the initial destruction of bones has ceased. I can't get ordinary shoes on due to the bones projecting at odd angles from my foot so go to the orthotics department for shoes. At present both my legs are in casts due to ongoing fractures but I have been told this is a very unlucky thing to happen and it is by no means the normal progression.

Elevated blood glucose over a long period leads to peripheral neuropathy and any tiny trauma to the foot can lead to microscopic changes to bones which due to diminished feeling and perception can cause the initial trauma to escalate to bone fracture and collapse. It is luckily - although no comfort to us -a rare complication and just because someone has neuropathy does not mean they will get Charcot Foot.

I wish you well with your ongoing treatment. It is certainly a painful, long haul but I hope you reach some stability where you can move out of a cast into a protective boot then hopefully into some customised shoes to protect the areas of your foot that are most vulnerable. Above all don't despair, it is manageable with optimal blood sugar control but is a real challenge to live with. Good luck.

Hey Flowerpot, thank you so much for your helpful and detailed reply. I suddenly don't feel quite so alone with this condition now. I can relate to a lot of what you say and my HbA1c is not far off yours at 7.0% but still the foot continues to fracture and has now collapsed. I too have been told by the podiatrists and consultant that I have to be patient and it could take up to 2 years in a plaster cast before going into an Aircast which horrified me to begin with but I've kind of come to terms with that now. I have suspected for some time that my other foot is going the same way so, like you, I might have to endure a plaster cast on both legs and feet.

Thank you again for responding. It's certainly not a common condition and many health professionals haven't even heard of it. I learnt this the hard way when 5 GP's at the practice I go to misdiagnosed the condition resulting in me taking useless medication and being in agony for a lot longer than necessary. The problems I was initially told I had ranged from a foot infection, heart disease, water retention, gout and the result of a sprained ankle. In desperation I took myself off to the diabetes clinic at my local hospital and within 10 minutes of seeing my foot they said it looked very much like Charcot foot.

I hope none of you reading this will ever get the condition. If you do start having problems with your feet though in terms of severe pain, any of your toes suddenly appearing to point slightly sideways, a fallen and painful arch or hard lumps appearing anywhere on your foot and your GP isn't quite sure what it is then ask for an x-ray to either confirm or rule out Charcot foot. If it is then the sooner you get it treated the better

Stuart

 

[Flowerpot]

I'm so sorry to hear you were also misdiagnosed @Ashmore69. I was sent home from A and E with the diagnosis of a sprain even though I told them I knew I hadn't had any injury that might have caused a sprain, I was given anti inflammatory tablets and told there was nothing to worry about and continued to hobble in agony until being sent for a second X ray by my GP. By that time my foot was obviously deformed with bony projections and from then on it was a case of trying to salvage my leg. This happened pre internet so I hadn't heard of Charcot Foot at that point sadly nor had the medical team I saw.

Unfortunately initial X rays of Charcot often don't show the bony destruction in the early stages and I have read a few cases of misdiagnosis which always lead to a worse long term outcome. I really hope Charcot Foot is flagged up as a potential diagnosis for any diabetic patient presenting with a swollen, hot foot

I wish you well Stuart. I think it is very helpful to be able to warn others about such horrible, life changing complications and raise better awareness in the hope others aren't dismissed without the correct diagnosis and care.