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Charcot Foot

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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aqb197

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Relationship to Diabetes
Type 1.5 LADA
Just diagnosed yesterday with Charcot foot, after first going to the GP with problems with my foot in February. The Orthopaedic consultant was very relaxed about it and has said "we'll monitor it" and to come back in a month.

I'd never heard of it until yesterday and reading up I'm quite concerned. I see on the letters between the consultant and my GP that he suspected Charcot a couple of months ago. Looking at the NICE guidelines I should have been referred to a specialist team within one day of it being suspected.

Is it safe to wait a month or do I need the referral to the multidisciplinary foot care service? If so, how do I get this referral?
 
Welcome to the forum @aqb197 .🙂 Charcot`s Foot although rare can be very disabling, I am at risk of it and I am checked every 3 months at the Podiatrist clinic in the hospital. @Flower will be along later and give you some advice, she has been living with it for years. Can you elaborate on your symptoms please if you wish, we may be able to give you extra advice. Keeping your blood sugars (BS) under control is crucial as is checking both feet daily, take care.
 
Hi. Current symptoms are a foot that looks a bit 'puffy', the arch has collapsed a little and bulges out to the side, my toes now point at 1 o'clock instead of 12. My poor little toe is building up a layer of hard skin on the outer edge as it's subject to more wear. My boots don't fit anymore (I wear boots made by the specialist mobility people as my other foot is just a fused mass of bone from a non-diabetes related injury years ago) My balance was always bad on my other foot because of the injury, but now I struggle to even stand up to shave in the morning.

Right now, sitting down with my knee and ankle at 90 degrees, and if I walk very carefully and precisely, there's no pain. But if I'm not careful it becomes very painful just heel-wards of the arch and on the other side an inch or so back from the base of my little toe.

I've had x-rays and MRI over the last three months, it was the results of the MRI that the consultant told me I had Charcot foot.

Because of the pre-existing ruin of my other foot, I've been careful for years checking my feet, It was the onset of the pain described above a few months ago that sent me to my GP, I initially thought I'd broken my foot somehow, but it seemed unlikely as it suddenly hurt in multiple places. There was no sign of deformity at the time though, but by the time the x-ray appointment came through it was noticeable. In retrospect, I wish I'd gone to A&E instead.
 
Hello @aqb197 welcome to the forum.

I'm really sorry to read about your diagnosis and like you I am really concerned about the relaxed approach the orthopaedic team have taken.

As you have clinical changes with arch collapse and classic bulging of the foot structure I'd get help immediately. The usual method of treatment is to try and conserve the foot and ankle structure by immediate immobilisation in either a cast or a protective boot and the use of crutches to avoid weight bearing. It's at a really vulnerable stage if you've already got signs of arch collapse etc and the intention is to try and prevent the bones and joints collapsing and losing their structure. Once the bones have started to collapse and shift you end up putting pressure through the wrong areas of the foot making it more likely to get pressure ulcers and cause more long term damage.

Look on your hospital website under Diabetes and high risk foot services/podiatry for a phone number and give them a ring, they are the best placed team to help. If that doesn't work then I would ring your diabetes specialist nurse/GP and ask for an urgent appointment with the high risk foot team as you have been given a Charcot diagnosis with no urgent follow up. I went to A&E when my foot first became so painful and swollen and was sent away with the diagnosis of a sprain - this was pre internet and like you I'd never heard of Charcot foot. Within approx 72 hours my whole foot structure had collapsed and approx 23 years on I'm still dealing with the consequences of a mis diagnosis/delayed immobilisation. Things can deteriorate very quickly and it is an urgent situation. In your situation I would act and do it fast to give your foot the best chance.

Let us know how things go but do not wait for a month to see what happens. Best Wishes.
 
Thanks for the info.

Just back from seeing my GP, who has refused to refer me anywhere on the grounds that I am already being seen by an orthopaedic consultant, and gave me a lecture on what he thinks of NICE guidelines.

I will try and contact the hospital directly tomorrow.
 
Sorry to hear that was the response 😡. Charcot foot is pretty rare and GP's hardly ever see it, it's pretty rare at an orthopaedic clinic too. Please don't be put off pushing to get the necessary assessment and care, it is vitally important for you and the future of your leg.

Are you seen at a hospital diabetes clinic ? If so contact them and ask for their help to get a referral.

Having lived for decades with the consequences of delayed treatment and knowing how vital it is to get an early care plan in place it exasperates me to see that you've been dismissed like that. The NICE guidelines are there for a good reason and Charcot foot needs proper and timely management.

Keep knocking doors until you get the proper care you need. Best Wishes.
 
aqb197 said:
Thanks for the info.

Just back from seeing my GP, who has refused to refer me anywhere on the grounds that I am already being seen by an orthopaedic consultant, and gave me a lecture on what he thinks of NICE guidelines.

I will try and contact the hospital directly tomorrow.
Click to expand...
I hope you can get the attention you need quickly. If you continue to have problems then it might be worth contacting the Diabetes UK Helpline who might be able to help with your options. Like @Flower, I am appalled at the complacency shown :( Good luck!
 
Hello @aqb197, sorry its a bit late coming back to you, I read your reply this morning and I am horrified about your treatment. You need too be seen by the Multidisciplinary team within a Specialist Diabetes Foot Clinic, I do not need an appointment, I just call the Podiatric team and are usually seen the same day. When you phone the hospital tomorrow, try to speak with the Podiatric team you should have a direct number for them, please be careful we are here for you.
 
An update: I wasn't able to get anywhere contacting the hospital directly, there was apparently no podiatry team I could talk to and the diabetic services would only accept a GP referral. I couldn't contact the patient experience coordinator (or administrator or whatever) listed on the letters from the consultant to my GP.

I managed to get an emergency appointment at one of the local podiatry clinics (these are at the small community health centres rather than the big hospitals) and they took some photos and contacted the guy that runs the podiatry team (that does in fact exist after all) at the hospital and I'm booked in next week. I got the impression that the little local clinics have a much closer relationship with the specialist hospital team than the orthopaedic consultant who works literally 100 meters away from them in the same hospital does.
 
Well done @aqb197 your tenacity paid off,🙂 please let us know how you get on, great news.
 
I'm relieved to hear you have got yourself to the correct clinic thanks to your tenacity as @KARNAK so rightly says. It really shouldn't have to be so difficult for you to get the appropriate follow up with all the emphasis on preventing foot complications so well done on negotiating your way through the system. I hope your appointment next week goes as well as possible. 🙂
 
That's great news 🙂 Well done for persevering - as @Flower says, there should not be ANY obstacles to getting good foot care! I hope that the appointment goes well and you get to see someone who actually appreciates the potential seriousness of your situation 🙂
 
An update from my foolishly optimistic message of last week:

No one ever got back to my to confirm the appointment and I have no way to contact the diabetic foot team directly. The only number I have just gives me a recorded message saying they;ll be in touch.

So, current status:

- my GP won't refer me, and is in fact a bit of an arse (old GP retired three months ago), assuming I survive this I may switch surgery.
- can't contact orthopaedic consultant or patient experience whatever, answer phone messages not returned.
- no way to contact hospital diabetic foot team.
- there's a general hospital diabetes service listed, but they won't talk to me, they insist I be referred.
- I can get another podiatry appointment at local clinic, but not until Tuesday.

I'm currently trying to decide if I'm in enough pain to justify going to A&E, but I don't know if that'll do any good anyway as the A&E and diabetic services are at different hospitals.

My sister in law, who used to be a nurse, suggested I may be able to get a private referral, but I have no idea how that is arranged?

Failing that, I have a hacksaw.
 
I would contact the Diabetes UK helpline as it is appalling that such a serious diagnosis as Charcot foot is being ignored by the systems that should be there to protect you and your leg.

The helpline number is here https://www.diabetes.org.uk/how_we_help/helpline

I presume by a private referral you mean to a private podiatrist? For something as serious as Charcot they won't touch you and would refer you to A & E. Has your foot remained in the same shape as last week or has anything deteriorated ?

Who do you see for your diabetes care? Have you tried them or the secretary of the diabetes consultant - if you have one. Have you managed to speak to the local clinic where you saw someone last week?

Something to bear in mind is that because Charcot foot is a neuropathic complication the level of pain you may be feeling might not reflect the level of problems in the foot.

Once more I'm really aghast that you've been left to sort it out for yourself when the NICE guidelines say that you should be referred to a specialist team within 1 day if Charcot foot is suspected. Keep at it - I may sound like I'm nagging but I'm living with the devastating reality of what can happen. Best Wishes.
 
As Flower says please pester & keep at it. Your health is more important than upsetting a few primary care people who don’t seem to appreciate how important this is.
 
Thanks for the replies, I've taken the appointment next Tuesday, I'll call the helpline if I can't get a confirmed appointment made then and there for actual treatment. Having seen a letter between the consultant and my GP that'll mark two months to the time he first mentioned he suspected Charcot.

Normally for diabetes stuff I've just seen the practice nurse, sadly she also left the surgery after the old GP retired and now the surgery is just one outlet of some local super-conglomerate so I don't know what happens now.

By private referral i think my sister in law was meaning to see a private doctor to get a referral to the specialist foot care team at the hospital.

Luckily my foot hasn't changed any (the changes I mentioned above happened back in April/May), it's been more painful than usual this last week because I actually left the house twice.
 
My spouse was diagnosed a couple of weeks ago with Charcot with an x ray and now waiting for his CROW foot boot. But now I'm wondering if he was misdiagnosed. His foot is swollen but no redness. Can the foot have Charcot's without being red? Also during the night the swelling does go down. When he gets up in the morning his foot will get swollen again the next day. Is this typical with Charcot's the swelling gets better when laying down?
 
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Hello marip and welcome🙂

Charcot can be difficult to initially diagnose as it is similar to a sprain or infection at the onset and early X Rays can appear clear. The main thing if Charcot is suspected is to protect the foot in either a cast or crow walker boot so that the bones in the foot are protected from pressure,fractures and collapse. There are presumably enough clinical signs to suspect a Charcot diagnosis and the sooner the foot is protected the better the outcome. The clinic will follow your spouse up regularly and check on the temperature of the foot .

It is tedious to be in a boot but the main aim is to protect the foot from changing shape.

I wish you well.
 
Hello @marip first of all welcome to the forum.🙂 As @Flower is our go to person for people with Charcot foot/feet. I am diagnosed at risk although it is rapidly getting worse, as for you @aqb197 I can`t understand what the problem is, come on get your rant gear on, its your health not theirs
 
> as for you @aqb197 I can`t understand what the problem is, come on get your rant gear on, its your health not theirs

I went into full blown rant mode last week.

They asked me to attend the appointment an hour early so I could have x-rays which I happily did. I turned up and was told 'take a seat, we're just doing the paperwork for the x-ray, we'll let you know when it's done.' Thirty minutes pass with no activity, I go to see what's going on, having seen several people walk in and get handed x-ray forms immediately. 'we're just working on it, take a seat'.

Thirty minutes later, same story, i'm trying to be all calm and polite I say 'what was the point of me coming in an hour early when all I've done is sit here for an hour?'.

Back to waiting, finally after another 45 minutes, I'm called in to see the consultant, who immediately says 'hmmm, you haven't had x-rays done', scribbles out the form in a matter of seconds and says 'take this to x-ray and then make another appointment to see me'

Err, hell no. I can barely walk, I'm in constant pain, I've quit my job because I can't get there, it's been over six months and nobody has done anything except disbelieve me or tell me 'oh that's normal/not that unusual', 'LOOK AT MY FOOT FOR GOD'S SAKE!' 'Is that 'no significant deformity' (what the consultant put in a letter to my GP)?', it's bursting out of boots made from a cast of my foot less than nine months ago. e.t.c. e.t.c.

So I got referred to the diabetic team, but it'll be next week before the next clinic. At least I now have direct contact information for them.
 
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