So long story not so short back in feb I had a swollen foot, bit of pain and had been feeling feverish. I have a history of foot ulcers so wondered if it was maybe an infection of some sort. I saw the podiatrist at my diabetes clinic who said she thought it Charcot, put me in a moon boot and sent me for an X-ray. Over the past 6 months I have been in this moon boot I have constantly questioned why they have continued with the narrative of charcots. There has been no change in my X-rays whatsoever. The mri showed what were potentially very early signs of Charcot but nothing conclusive. I have had no pain, swelling or redness since February. The only basis for keeping me in the moon boot was temperature difference as this has ranged from between 8 and 3. I finally got a referral to orthopaedics 3 weeks ago who looked at the X-rays and believes that I have osteoarthritis however he couldn’t rule out Charcot. His plan was to trial me without the boot for 6 weeks and if there were any deterioration to intervene surgically. I was to continue seeing podiatry to keep an eye on things. Well today I’m back in the moon boot because of an 8 degree difference and they are pursuing this effing Charcot narrative again. I’m beyond frustrated and can’t help but think this is purely professional ego at play after telling me it was Charcot for 6 months they want to keep that going! In addition I find it beyond bizarre that the fluctuation in temp is the non Charcot foot and every time I question this I am told they go by the difference in temp and that’s it! My Non Charcot foot was 26 degrees today which to me seems oddly low and yet they continue to jump on this big difference without considering what else may be causing this! Am I just in denial or am I right to question what the heck is going on here. I’m addition to this the temperature checks are not carried out to any standard or guideline that I can tell as I’m usually in and out in 5 minutes so I don’t believe there is any attempt at accuracy. Sorry for the rant but 6 months is a long time to be immobilising if there is actually no need for this in the first place!
Charcot foot… am I in denial???
- Thread starter Pinkamethyst
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Hi @Pinkamethyst and welcome. I had this in October 2013 and had both legs plastered for a period of 10 months. The diabetes/podiatry expert took several X-rays and MRI scans and was very open about his findings. He said "If it is Charcot, it is only very feintly evident. We have ruled out gout (which I had experienced many times before having a kidney/pancreas transplant in August 2013) and cellulitis. The most likely thing after 54 years of diabetes is Charcot Foot." I had never heard of this until that day. The reason they put you in Aircast boots is to give your feet maximum support. If they didn't, and it turned out to be Charcot, your foot would collapse. I have been wearing orthotic shoes ever since and my feet are in excellent condition. But if I wear other shoes for too long, especially flat shoes, the pain starts, even though it is nothing like as bad as in 2013. So I wear the orthotics 95% of the time!
It is frustrating, but nothing like as much as if your feet literally collapsed!! Very best of luck
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I would tend to agree with @Goonergal -even just based on your levels of frustration. That can't be helping anything.
If you do decide to go for a second opinion, you are also entitled to a named referral to a consultant of your choice, The do not need to be in your usual clinical group area. You can ask to go wherever you like.
The only thing I would say is if you elect to go for a second opnion a long way from home, you have to seriously consider how convenient it would be for clinic/routine appointments and how any urgent care would be dealt with.
I don't say that last bit to discourage you, but there is little point seeking out something that would be logistically near impossible to follow through over the loner term.
The information on second opinions, and named referrals was given to me by my GP after a "disappointing" experience where I left the consultation (nothing to do with diabetes) knowing the consultant was lucky to live. Ahem.
If you do decide to go for a second opinion, you are also entitled to a named referral to a consultant of your choice, The do not need to be in your usual clinical group area. You can ask to go wherever you like.
The only thing I would say is if you elect to go for a second opnion a long way from home, you have to seriously consider how convenient it would be for clinic/routine appointments and how any urgent care would be dealt with.
I don't say that last bit to discourage you, but there is little point seeking out something that would be logistically near impossible to follow through over the loner term.
The information on second opinions, and named referrals was given to me by my GP after a "disappointing" experience where I left the consultation (nothing to do with diabetes) knowing the consultant was lucky to live. Ahem.
Lobsang Tsultim
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I hadn't heard of Charcot foot before but looking at the NHS literature I came across this
"How long does the treatment take?
This is a very difficult question to answer, as everyone’s treatment takes different lengths of time. It can vary according to method of cast used, and how much rest you can have. What we do know is that the average length of time in a cast in the UK is 9 months."
So unfortunately it seems as if your 6 months of frustration are likely not over if it really is Charcot foot syndrome This is a very difficult question to answer, as everyone’s treatment takes different lengths of time. It can vary according to method of cast used, and how much rest you can have. What we do know is that the average length of time in a cast in the UK is 9 months."
I understand the need for proceeding with caution and that the moon boot has been for my benefit and no one else’s the problem I have is that for 6 months I have been querying could this be something else and when I finally get a referral to orthopaedics who are more inclined to think this is osteoarthritis and put a surgical plan in place the diabetes team have swooped back in and put me back on the Charcot train. Maybe it’s because I’m a former midwife that the we know best and don’t don’t questions it’s just that way because we say it is didn’t fill me with confidence when the only diagnostic they are basing this on are completely inaccurate temperature checks and ignoring the fact that every other diagnostic has either been inconclusive or shown no change and the consultant they referred me to has said he doesn’t believe it’s Charcot. I am back at the diabetes foot clinic tomorrow so will find out then. 9 months is actually a modest estimate for the moon boot I was told 9 months to 2 years hence why if it is actually arthritis I don’t want to spend any unecessary time immobilising
Similar to you I was diagnosed with charcot foot last year because my left foot was warmer than the other. I have other complex medical conditions alongside this diagnosis. Diabetic neuropathy (sensory and motor), a slipped disc 6 years ago with resulting severe sciatica which damaged the nerves and muscles in my left ankle giving me a permanent left foot drop plus oesteoarthritis in back and shoulder. I had an x-ray and MRI scan at the beginning of the charcot foot diagnosis and the consultant pointed out I had a fracture in my foot, which I assured him was a result of an operation at 23 to straighten one of my toes (many years ago). Nevertheless, a boot splint was suggested. I have been wearing this for 12 months now and frankly, I'm not convinced its charcot foot but a combination of all the other conditions I have. My calf muscle is now thinner and ankle is very week. So unless the next MRI scan shows anything different the boot splint is coming off.
Anybody else with charcot foot having similar problems?
Anybody else with charcot foot having similar problems?
I'm having a similar problem to you. Temperature checks taken on a foot which is wrapped up very securely and warm in a padded boot. Oh look your foot temperature is higher than the other one, what a surprise?
Does anyone here know where in the UK there is a charcot foot specialist or any trials about this condition?
