Charcot Foot

[kbow]

My husband has been diagnosed with Charcot foot in both left and right feet. He started complaining about his feet swelling up and being in considerable pain to our local GP and diabetic nurse about 2 years ago, but this was ignored by them, even prescribing water tablets stating it was water retention.
An x-ray was taken in October 2011 where it is clearly visible that there is a break down of the left foot, but we did not see the x-rays at the time and he was told everything was ok.
He is know faced with an operation to fuse the bones together in both feet (one foot at a time) and will be off work for three months minimum for each operation. This is devastating for him as he is self employed but realises that it is the only way to get some form of mobility back. He is only 46 years old and even the consultant said today that he has been very unlucky.
The consultant has also stated that there is a 1 in 10 chance that he could lose his foot following the operation due to infection, which obviously puts the fear of living god up him.
My questions therefore to the forum are:
1 Has anyone had a similar experience good or bad?
2 Has anyone had the " fusing" operation and was it a success or not?
3 Are there any other operations / treatments out there?

Any information on anything to do with Charcot would be great.

 

[catherinecherub]

So sorry to hear your news.
There is a member who has set up a Facebook page for charcot foot. You will see the address in his post at the start of the thread


viewtopic.php?f=19&t=44755&p=412879&hilit=charcot+foot#p405154

Might be worth sending a pm to the poster.

Take care both of you,

CC.

 

[kbow]

Thanks so much for that. We will have a look!

 

[SewK8]

Hello

I don't have that condition but have had 7 procedures to my feet including 1st metatarsal fusion, ostiotomy (sp) and bone grafts. I would be happy to chat about this but stuck for time at the moment.

Kat




Sent from the Diabetes Forum App

 

[kbow]

Thanks for that. May chat over the weekend :thumbup:

 

[tizzy]

I am sure this is the wrong place but I thought I had pmd a couple o f people and there is no trace of them so sorry to them they may think I hadn't replied to them but if they see this post they will know I tried

 

[chacct]

I'm so sorry to hear about your husband. I have charcot foot but it only effects my right foot. I wish him all the very best.

Two years ago whilst abroad on holiday, I missed a step and tumbled forward. I managed to stop myself from completely falling flat on my face!! My right foot swelled up immediately and I found it hard to walk on. I was in Ibiza Town at the time and didn't want to have my leg in plaster and not be able to fly home. My foot wasn't painful just swollen and bruised.

I went to A&E a few days later and told them I was diabetic but they sent me away saying my ankle couldn't be broken as it wasn't painful. My foot was so swollen I couldn't get my shoes on and had to wear flip flops. Two weeks later I went to see my GP and he gave me anti inflammatory tablets. I returned a week later and demanded an X Ray. The hospital advised that I would get the results within the next 10 days.

I went straight back to work following my X Ray and received a phone call from the hospital telling me that I had seriously damaged my foot and should return to see them immediately. I'd suffered multiple fractures, torn ligaments and a shunting of the laregest bone in my foot. This develped into charcot foot. I had to wear a diabetic air cast boot for 11 months.

The specialist recommended that I did not have an operation as he said I may loose more functionality of my foot and was open to infection that could lead to amputation. I obviously didn't want this to happen.

Two years on, my foot is much improved. I do have to wear supportive shoes supplied by the hospital but this is a small price to pay considering the alternative.

The foot care provided at my Diabetic Clinic is very limited. They only seem to check for sensation or the lack of it. Surely they could do more?!

 

[Flowerpot]

Hi, I have a Charcot foot and ankle. Both my mid foot and ankle joint collapsed.

Similar to your husband I went to A and E with a foot I couldn't stand on that was very swollen. The initial x ray showed as clear. I was given anti inflammatory tablets and sent on my way. I struggled on for a few days but on returning the destruction of the bones was apparent. I was in plaster for about 18 months until it had stabilised enough to be operated on. I had a fusion operation which was successful and held me up for about 10 years but I have since had to have a second fusion as some of the metal broke.

It is difficult decision to make as the risks and odds of problems are so high. However, I wasn't able to walk with out a cast holding it together so I opted to go for the fusion. It took me about 9 months to recover, and I still have a deformed foot that won't fit in any standard shoes and a fused ankle with no movement. The consequences are dire if things go wrong, however I still have my leg even though it is a redesigned shape and that for me made the operation the right choice. The surgeon has to give you the worst case scenario so you are aware. The thought of surgery completely terrified me

I hope the treatment your husband chooses serve him well and he gains some better mobility. Good luck.

 

[kbow]

Thanks for sharing your stories. He has been told it will be february at the earliest before the hospital can fit him in for the operation! His podiatrist, who we see privately, has arranged for him to see a consultant foot specialist this saturday so hopefully we will have more news then. If he has to wait until february, there might not be anything left in his feet to fuse It's all very scary and in the meantime, he is in constant agony.

 

[hanadr]

My husband developed Charcot in both feet quite a few years ago.In his case too, the medics failed to diagnose it for a long time. By the time they realised, several bones had broken. [the feet went about 5 years apart] The relevant foot was put into an aircast to immobilise the bones and eventually, both have healed up , rather distorted. NHS now makes shoes for him and the bones projecting downwards onto the pressure points have a tendency to ulcerate. He's even had to be put into plaster, which was removed weekly to treat the ulcers and then replaced. So far we've avoided the need for any surgery. It does mean looking after the feet, inspecting for skin damage and wearing SOFT socks and well padded shoes.
We've kept going like this for a few years with no signs of things getting worse, but his BG control is fairly good with Hba1c around 7% and mainly a low carb diet.
It's a disability, but not necessarily a total disaster.Make friends with your local NHS podiatry department. They are more knowledgeable and helpful than doctors.
Hana

 

[Flowerpot]

It is really alarming that 4 out of 4 on this thread were initially undiagnosed/misdiagnosed when presenting with this horrible complication. The long term implications of being sent away with anti inflammatory tablets when in fact the bones in your foot are beginning to collapse are shocking.

With the increasing prevalence of diabetes I really hope Charcot foot is flagged up as a potential diagnosis when diabetic patients present at hospital or a gp clinic with a swollen foot.

 

[kbow]

Thank you for that Hana. Unfortunately, our NHS podiatry department is no help - they missed the early stages of charcot too!! Nobody really seems to know what it is or what to do and he has been passed around and no-one has taken control of the charcot or his general diabetic care. We finally spoke to someone yesterday ( thanks to our podiatrist who we see privately ) who wants to get him referred to a specific multi disciplinary team who will take over his general care in one place. He is also speaking to a 'gold star' foot surgeon to see if he would be prepared to look at him and operate, either privately or on the NHS. It seems like we have a difficult few months ahead as both feet need to be operated on but it the long term, it will be worth it. I just wish that the doctors had admitted from the start that it was not their field of expertise and find someone for him who specialised in it. 2 years since the symptoms started and it is still us who have to do the research and find the right people to talk to. Its not right - we are talking about peoples lives here!!