Charcot Foot

[gill159]

Hi. Hope you don't mind an English person joining this forum - as someone says there seem to be very few sites that discuss Charcots foot !
I was diagnosed back in October last year - my foot had already been swollen over a month and I'd been tried on various anti-inflammatories and antibiotics without success. It shows how few folk know about Charcots as i am an early retired (I'm 54) family doctor and a diabetic of 43 years standing but neither myself or my former colleagues diagnosed it ! In the end an old friend from medical school suggested it on an e-mail to me ! I was scared stiff it was secondaries to breast cancer I had in 2002 so at first was very relieved it was Charcots, - however as you all know jsut a flit through the internet soon tells you the frightening reality of your situation.
I went into a boot for several weeks because my first hospital didn't do casts. Then I was in a cast for 18 weeks, and now I'm back in a boot while they sort my shoes out. They first of all made me a pair that fitted beautifully but had left no room for the insole ! So I'm still waiting. I'd like to get out this boot really - it's now leaving a big bruise-mark over the front of my ankle by the evening.
Luckily my foot doesn't look a lot different from the other one now and I have re-gained a reasonable arch..I didn't break any bones they just swelled - (probably due to line-dancing!) However when I get the shoes I've been told to wear them for only 5 minutes a day for the first 10 days till i see the podiatrist Fair enough, but when I asked what would come next ( i.e. at what rate should I try & progress my mobility)she shrugged her shoulders and said that was up to me. She had no appointments to monitor folk , I could only come back if it re-curred ! I asked if the orthotist would look after me. "She only sees you once a year for shoes" was the reply ! So I don't think there is any set out protocol for how long you should take to walk, stand etc for certain lengths of time,so if anybody has any advice I'd be very grateful! They also tell me these orthotic shoes are for life, but surely I could get some insoles put in nicer (good & nearly flat obviuosly) shoes - say for evening , after a year or two. Any ideas folks ? Gill

[flosemae]

Hey, sorry to hear that you have this also..I am in the boot right now and have been for 6 weeks...Did you have any kind of sore? I don't thank the Lord...The Doc I am seeing xrays my foot every 3 weeks and does not really tell me how long this will take but the way he talks it may be a long time ... I broke my fibia last August and the ortho doc did not want to cast it , so here I am...my mid tarsal has shifted to the enter part of my foot and 2 toes are involved...my foot is deformed...to the point that I have a large knot on the inside of my left foot the makes it difficult to wear a normal shoe...I am an rn that has been a floor nurse for 21 years and I really miss it...I have 24 weeks total to be out and then they will let me go...I am also a DM and have been for 15 years and did not take good care of myself and that was bad...The doc that treats me for DM wants me to go out on diability but I don't know about that...I don't know how hard that would be to get....I also have Mascular Degeneration and have had 11 lasers on the right eye for bleeding...The lasers don't bother me but the floaters do...I don't mean to talk you to death but it is hard to find alot of people to dicuss this with..I sure am sorry that you had to retire early because I know your profession has to be rewarding...I hope you will continue to reply to this forum...Has anyone talked with you about surgery on you foot? Is yours deformed in anyway? Do you have any other health problems with the DM? It is a horrible disease and I hope that someday they will find a cure...Did you say you were from England? well thanks for listening and I hope you will keep in touch..I will be glad to know how you are doing and what the process you are going through....Thanks

[gill159]

Hi Flosemae, Thank-you for replying, though sorry to hear of your problems. I've had no sore from my boot just this bruise-like area over the front of my ankle and proximal foot which isn't even going in the morning now, so I think it's something to do with the blood returning in the veins being impeded by the pressure in the boot - if that's so I'm probably stuck with it for ever now - rather like the mauve marks you can get when varicose veins make your circulation sluggish. I am very lucky that my foot is hardly deformed, just a little more rounded on the medial (inside) edge than the other one. The (midfoot) bones affected with me are the cuboid, medial cuneiform, and some of the near ends of the metatarsals - making a sort of horshoe shaped problem zone. I've kept an arch though it isn't as good as the left foot's - so I don't need surgery at the moment.
I too have had laser treatment - very extensive in both eyes - due to diabetic retinopathy. I hated it, not so much because it was painful but because i was so scared i would move my eye at the wrong second and ruin my central vision - especially as the opthalmologist I went to had a very good name and so often had students looking on - sometimes I got jostled by those trying to see through the side microscope ! That's one of the hazards of the British NHS I suppose, but at least we don't have the worry of having to pay.
I read on the internet that plain x-rays are suggested every 3-4 weeks, but I had one with my scans and nothing since - don't ask me why !
My poor Diabetic control probably helped lead to the Charcots. My job was so stressful that my HbA1c's varied from 8.9 (240) to nearly 14 (415)! Now they've put me on the Lantus long-acting insulin + quick shots - that means I've gone from 2 injections a day to 4 injections and 4 blood tests - rather a hassle , though it's reduced my HbA1c to 6.6 (155)! They've also insisted i go on a DAFNE (Dose Adjustment For Normal Eating) course in July. Do you have that in the USA ?
Anyway from trying to ignore my diabetes for over 40 years my life is at present dominated by it.
I don't know about you getting disability in the USA but I'm sure here it would be deemed as serious enough. I got a disabled parking badge with no problem and they're difficult to get now.
i too asked at the start how long the Charcots would take to burn out but they just didn't know - everyone is so individual that they can't really predict. With me my foot suddenly seemed to start improving after about 14 weeks. The consultant admitted comparatively little was known about Charcots. Do hope yours doesn't take too long - but I think you have to take a lot of care for life with this so a job on your feet may not be practical anyway.
Anyway you said about talking a lot, I've rambled on far too long ! Best Wishes Gill

[flosemae]

Hey, great to hear more info from you. No I don't think we have DAFNE here, although we could have it and I have never heard of it...I do have alot of DM's on the floor that I work on...Alabama is number one in the nation on the number of DM's in the state...Wish they could find a cure but I don't think that will happen in my life time..I too have ignored my DM over the years...I have been diagnosed with DM for about 15 years and propably was in trouble with it before then...I went for my appt. with Dr Padula today (podiatist) and he said my foot is forming back enough ( and that I am out of the acute stage) that they now can but me on bone inhancer to help it mend faster...Looking forward to see if it helps..He is a very nice man and tells me just as you were saying , that everyone mends at a different speed.Just before I saw him a gentleman was being xrayed for Charcot and his ankle was involved and they were discussing that he may have to have it amputated...So I know that I am lucky that mine is not to a point of danger of that ...With your Retinopathy do you still have alot of floaters? I have an eye full right now...But they do go away after a long time...well I have rattled on also. I am going to look and see if I can find more info and if I do I will share...please do also ..and I hope you do well in the shoes? Flosemae

[kdramirez]

I DEFINITELY hear you! I was just last month diagnosed with Charcot. Also being a diabetic for 43 years, wonder why it was never listed with the long list of complications that are preached to you since day one!! Anyway, I just learned this "boot thing" is to be a part of my life forever. Needless to say, I've been very down since learning of this. I work in a very professional office and I LOVE to wear dresses and nice suits. While I know I cannot compromise my health, someone out there HAS to know of some other place to get semi-decent shoes!! I can't imagine showing up every day in tennis shoes and a business suit.

If any one has some ideas . . . even for flats . . . I am most desparate for help!

KR

[gill159]

Hi. Sorry to hear about your Charcots - yes it does seem to be the "forgotten complication". I was a doctor and still I wasn't on the lookout for it ! Since I posted last in June 2008 I had to go back in plaster for a fractured metatarsal and only got back in shoes just before Christmas - however things have improved somewhat now. The shoes and insoles made for me by the hospital are very chunky and only suitable for trousers. I've just been on holiday to Egypt and had to waer them with shorts and crops and had to wear nice trousers in the evening because I had nothing to go with dresses and skirts. However I am having some private carbon fibre insoles made which can be put in daintier shoes - flats or a small wedge heel - to be worn on even flooring. If I am going to walk on uneven ground, especially outside, I will still need my chunkier shoes with the stiffened sole ( or I wear fairly rigid walking boots for anything in a field e.g.- car shows, fetes etc.) The podiatrist who measured me (computer laser) for the insoles recommeneded "Hotter" shoes as they have insoles in already that can be removed to put the custom ones in. I have also found Ecco shoes OK but a size larger than normal. This is over 18 months since I was diagnosed so perhaps a little way down the line for you - really everyone is individual . Gill

[kdramirez]

Thank you very much for the info!! Yes, I'm just "starting" to become involved in this apparent life-long journey. And I must admit . . . the vanity will be the first issue to overcome!

I've been looking at AFO braces and "wide shoes" on the internet. Next visit to the podiatrist, I'm going to ask if a "smaller" less intrusive brace can be used after the initial healing is completed. Then, if this thing fits into regular "wide" sized tennies, why couldn't you purchase a special "wide" pair of regular shoes? They offer them in all sizes of width now. I don't even care that the "brace" shows; I just want regular looking shoes to balance out the office look.

That's one thing I've learned these many years fighting this deadly disease . . . NEVER give up with the first (or second or third or . . .) answer you get! KEEP DIGGING!! Thank you again for your response. I'm starting to feel a little better about this whole thing. I will look up the info you supplied.

Kathy

[kdramirez]

Thank you very much . . . I guess I just need to start looking for alternative foot wear. This looks like a good place to start.

[mswank]

Gill
am a recent recipient of corrective surgery for charcot foot (right). I had two bone grafts and 2 fusions with external fixator that I wore for 3 months then removed via surgery. I was told only a good orthotic will be needed. will find out after my next stage..a walking cast.
mike

[kdramirez]

I've just been re-reading some of the posts to this topic. So it IS "possible" . . . with a few alterations . . . to wear normal shoes again? I know each case is different, so a stock answer won't work. I was just in to my endocrinologist last week, and he didn't see any reason I should need to wear the brace forever. However, he did say that he was not a podiatrist and only had a general working knowledge of this condition. But even with a glimmer of hope that it would be possible to wear regular shoes . . . at least part of the time . . .would be such an uplifting piece of news right now! Again, thanks for your help.

Kathy