charcot foot

Hi Rosemae Sorry this reply is late, just found your post. I hope you are getting on better than me ! I too went back into shoes with custom insoles, around the end of June. I was told to start with 5 mins a day and build up slowly. I got to about 50 mins , after several weeks. being very careful and then my foot twisted on some uneven ground and I fractured the base of my 2nd metatarsal ! So I was back in plaster for 6 weeks. I'm now back in a boot and hope to start shoe wear again in a couple of weeks, but I'm scared now that my foot will be even weaker. . The consultants & podiatrists in my clinic seem very vague on advice for this. Are you doing exercises or having physio or anything ? I have been told I'll have to be careful with my foot for life and it's certainly been implied that long periods on my feet will be risky - 12 hours a day in your job sounds a lot. As I say I do hope everythings going OK for you - this is such a frustrating complaint ! Besr wishes Gill

 

Hey, i am doing ok i guess , as good as you can with charcot foot...i am in an arizona brace now...and they tell me it is for life or until i can have surgery ...but i am high risk and it will be a long time...was yours mid foot? They tell me (drs) that the ankle is the worst area to have charcot...that is what the arizona brace is for to protect the ankle...i am unable to go back to work. My podiatrist says if i try to work now i could blow the ankle. I went to a football game saturday and it was very hard to walk in...please let me know how you are doing...i will check the forum to see your progress...flosemae

 

Dear Flosmae and Gill

I have Charcot's in my left foot and have been wearing a crow walker plastic cast for 11 months now. I had the understanding from the orthopaedic surgeon that I would have to wear it for 18 months and then review the situation. The strain it has put on my right foot, has meant that I have also got a specially made ariculated foot orthosis for that foot also. Another ortho tried putting on a plaster cast, but it was applied to tightly and without a rocker bottom and without cruches and I ended up in hospital with cellulitis and a diabetic ulcer on top of my left foot. Spent two weeks in hosptial and came out in a wheelchair with the CROW walker back on. These doctors said I should have been in a wheelchair for the first three months of discovering my Charcot's. I'm out of the wheelchair now and wear the crow and brace on my feet/legs. What I'm so upset about is the ortho. at the hospital told me this week I'll have to wear the CROW walker on my left foot for the rest of my life. I'm only 48 and feel devastated at this. I am in Australia and it is hard for me to find out if any of these doctors really have an experience in Charcot's at all - one told me he had 1000/s of patients with Charcot's, another told me he's never treated it before. Who do you think is the best kind of specialist to treat this disorder - who do you two go and see? What has worked for you?

Thanks
Melanie

 

You say that one doctor said that he had had 1000's of charcot's patients and the other had never had any. Maybe it's just me, but I think that I would go with the one who had 1000's unless you think he was lying. The other one was probably telling the truth. So maybe if one was lying and one was telling the truth then you might go with the one who was telling the truth since you could probably trust him. So, I don't know, it might be a tough choice.

 

As evidenced by the seeming dismissal of the Administrator's efforts, not only in having posted a lucid description of Charcot's disease of the foot, its symptoms, findings, and pathology, as well a a brief review of treatment principles, but the offering in two other Charcot's threads, links to the many professional posts on the ePodiatry site on this topic, it would seem to me that the general questioners here prefer to question and challenge their own doctors' thinking and advice by soliciting anecdotal comments from other suffers and those who have family members with the condition. I have attempted to dissuade these posters from the re-cycling of information which often does not pertain to or may otherwise be inappropriate for individual situations as if it were, and this often elicits unkind comments regarding my efforts to that end. I am more than ever convinced that what the typical Charcot's questioner's really desire is social interaction and the commiseration of others who are just as frustrated with this condition and the uncertainty of its treatment rather than in obtaining real medical advice from those who would appropriately have directly assessed the patient in question. My advice . . Be careful what you ask for, as you might just get it.

 

Dear FOOT DOC

You are absolutely right. I am not looking for diagnosis or prognosis - but for advice from other patients who may have had some success. So butt out, or I'll kick you with my jedi boot.

 

At least you found SOMETHING about which I'm absolutely right. Sounds, though, to me by your posts, that you don't have a leg (or at least not a foot) to stand on, as no one other than the Administrator, and certainly not you, calls the shots as to who may and who may not "butt in." You do, however, flatter yourself to think that my general comments were directed solely to you. BTW . . . How you comin' along with all that good and useful lay advice from those who can but offer their own frustrations and anecdotes without any knowledge or consideration for your specific case and its nuances? Time better spent would be researching the best doctor in the field available to you and putting yourself in his/her hands.

 

Hi Melanie. This is Gill - I'm sorry I haven't been back to the site since September and didn't see your question to me. I am so sorry that the foot doctor has been so rude to you and Flosamae- I am a retired family doctor and I would never have addressed my patients so rudely. Perhaps he/she doesn't understand how vague the specialists can be on the subject of Charcots - and in my experience (as a patient I mean) have often answered my questions about Charcots with - do what you think, everyone is different ! You are so scared of making yourself worse that you really need some confident advice and as no-one medical will commit themselves feel obliged to try other patients.
I appear comparatively lucky in that I have now been discharged from the hospital clinic and just see the orthotist - though I can't get an appointment till March so have to hope my insoles last ! To answer your question I was seen by the diabetic consultant in combination with an experienced podiatrist. In this neck of the woods it appears you don't go to an orthopaedic surgeon unless surgery looks probable. I made the mistake of going to one first and it just held the total contact cast part up by several weeks. Charcot's isn't that common and I wouldn't think anyone had seen "thousands" - I'd choose the one you can talk to and who's willling to listen to others with similar patients. Hope things are improving for you. Gill

 

Hello to fellow charcot foot friends,

I wanted to share my story with you. My podiatrist initially diagnosed charcot foot 3 years ago. I wore a boot for 6 months then just orthodicts. In August 2008 I ruptured a tendon on top of my left foot (my charcot is mid-foot). An orthopedic surgeon performed surgery to replace the tendon and also loosed my Achilles tendon, which he said would help with the charcot. I was put in a cast for 6 weeks after surgery and when it was removed the area where they applied the cadaver tendon (aligraf) was infected. Was put on antibiotics for 20 days and applied medi-honey (from New Zealand) daily. After 2 months of PT, the same area is infected again. I see the surgeon in 2 days and I believe he'll do another surgery to remove the infection. (Hoping to avoid this scenario!). It's quite discouraging.

Thanks for listening,
Susan in Virginia

 

Hi Susan. Sorry to hear about your problems. I understand your frustration with this condition. Now I'm back in shoes I find it difficult to judge how much to do for fear of damage. I wear my orthotic shoes and insoles mostly but I've stopped putting the insoles in my slippers just to go to the bathroom at night and it seems OK. Also we've had lots of snow this last week - very unusual for us - so I've put my insoles in a pair of walking boots with very stout unbendable soles as I'm frightened of falling. I've gone myself to physio , though the hsopital thought I shouldn't need it, because my ankle is stiff after immobilisation (not charcot'ed - mine's mid-foot too) and yes my Achilles tendon feels tight too but I'm trying to ease it with exercises. The physio has me walking in bare feet and going on tiptoe when I see her, whereas the podiatrist wasn't happy with that and the orthotist just seemed to think my foot & ankle would be stiff forever & I should accept it. It's difficult to know who to take notice of, but the physio is definately helping improve my arch and flexibility to some extent. I hope if you go back in plaster again that they replace it every 1-2 weeks to make sure it isn't getting infected again. Anyway do hope things go well for you in 2 days time. Gill

 

I was diagnosed with Charcot Foot in Dec, 08 and finally got to see an orthopedic surgeon today. In the meantime I have been reading everything I could find about it on the internet. Because my feet hurt a lot when I walk, and everything I was reading told me that I should limit my walking I was able to get a loan of a wheelchair from our Health Region. Finally, today, I saw the doctor who looked at my foot which is quite deformed now, no arch at all, rocker foot, etc. He told me that I should see a podiatrist to get my toenails looked after but I could walk as much as I wanted to, because he said the new theory is that walking does no harm. He also told me he didn't need to see me again unless I developped an ulcer or some other open sore. If that would happen, he would operate and do a repair of the bones of my foot. Well, about everything he said..completely contradicted everything I have been reading. I am so confused tonight I don't know what to do. Even my family doctor told me I should walk to avoid blood clots in my legs. I walk like a drunken sailor, fall a lot, and have to hold onto furniture and things to keep my balance. I'm sure I need a second opinion but do I go to a podiatrist the next time? Please, someone help me! And yes, until I am convinced otherwise I am going to continue to use the wheelchair as much as I can.
I am in Saskatchewan, Canada

 

I would recommend that you obtain a second opinion from a doctor who specializes in or has a great deal of experience in the treatment of Charcot's foot regarding the alleged suggestion that there is a change in the theory regarding the harm potentially inflicted by weight-bearing. That is not something that I have personally heard.

Charcot's is a serious foot condition which needs to be treated individually and based on its own merits and nuances. You are probably ill-advised to be perusing the Internet for the recommendations of lay persons and even professionals who do not know the specifics of your case. Any information which you might obtain in such a manner should be run past your own doctor who has responsibility for your care before you act on that information.

 

Hi Joyceful. Sorry to hear of your problems. Over here in the UK you would have seen someone urgently once your Charcot foot had been diagnosed. From the sound of it you should have been "immobilised" a long time ago as damage has already been done. Please see somone with specialist interest ASAP as even if the acute stage is over and the opportunity to help by immobilisation lessened and/or an operation is not suitable at present you still surely should have special orthotics to allow you to walk safely and in relative comfort. Meanwhile I'm sure you are right to keep off the foot as much as possible.
I have found as a patient with Charcots that there is such a lot of conflicting advice (even from people in the same hospital department) - that even as a retired Doctor myself , who has searched the internet for what evidence- based medical research there has been, it is confusing. However nowhere have I seen that weight-bearing is now advocated. Good luck in your quest for someone to help. In England we are seen by Diabetic specialists, with help from podistrists and orthotists - with orthopaedic surgeons becoming involved if surgery is necessary.

 

Thanks Gill for your encouragement. I have never been impressed with the Canadian Medicare System and this experience has really soured me. Oh, to be in England now that April's here! Well, March anyway,, My ancesters were from England in fact Malcolm Muggeridge was my grandmother's cousin. But that doesn't do me any good now. I checked out all the foot clinics in Saskatchewan, Canada and none of them are taking new patients, so maybe I'll have to travel to a different province. Anyway, I believe some good will eventually come out of this debacle somewhere. I am glad that you had more success and wish you all the best.

 

Dear Joyceful, Gill and Flosemae

I have not returned to this forum for a month because I have been researching so much about Charcot's and also because of helpful information from both fellow Charcot's sufferers and also health professionals from this forum I have found an excellent podiatrist and Uni. lecturer in podiatry here in Brisbane, Australia.

It seems though that in order to get any podiatric surgery I will not find it in Australia, since there are no podiatric surgeons with any significant experience in operating on Charcot's here. I have names and email address of three excellent professionals in this field in the U.S. and one of them is registered to operate in Australia, Canada and the U.S. However I think the cost of travelling to another country and paying for the surgery, plus the 3-month hospital time to be in an external fixator is prohibitive for me. I am going to email these three surgeons and perhaps see if I can't convince them to come for a holiday here and do a quick surgery on my left foot between visits to the Gold Coast and the Great Barrier Reef.

My orthopaedic surgeon here has said that I have to wear my CROW boot for the rest of my life on myleftfoot. He keeps saying to me that this is "a good outcome for Charcot's", meaning I suppose that unless I comply I risk further deformity, ulcers, infection, and amputation. My left foot won't seem to move out of the acute phase - does anyone know how long this lasts - I've been in acute now for 16months.

I am getting some kind of new hard plastic orthotic for my non-Charcot's right foot - similar to any AFO brace, without the top part of the brace. There is no muscle tone in this foot and the arch is collapsed. The strange thing to me is that I have all the same "strange sensations" inside my non-Charcot's right foot as are inside myleftfoot (Charcot's): constant pins and needles, and severe tendon tightness. No surgeon wants to slice my feet open though - and that's all that I want - some relief.

Thank you to Donna (nurse) and A.S. of Woollongabba for your expertise.

Thank you to Gill, Joyceful and Flosemae for you continuing support.

Melanie

 

Dear Melanie, Lovely to hear from you. I am in definite agreement about both feet feeling the same ! I'm told how stiff my right (Charcot) midfoot is but it's really no stiffer than the good one, and they both feel as if their varoius tissues are "glued" together.
I thought I was acute for 9 months but as I broke a bone the month after it obviuosly hadn't settled so think my phase was around a year.
As for specialists in England luckily I haven't needed surgery as yet but if I did I was recommended Paul Cooke who works at The Nuffield Orthopedic Centre (NHS) and The Oxford Clinic (private) both in Oxford (according to his CV he worked in Melbourne at The Children's Hospital for a year back in the late 80s). Another acknowledged expert location is Kings College Hospital in London where the diabetic consultant, Michael Edmonds, seems to do a lot of writing and research on Charcots but I don't know which of their orthopaedic surgeons is involved.
Anyway do hope you sort sometthing out, I'm amazed there's no-one in Australia with the surgical expertise. Keep in touch. Best Wishes Gill

 

Melanie,
I think the answer to your problem is the same as mine.. It's just beyond the black stump. We must not give up. I am on the internet day and night looking for a doctor that will fix my foot. And I am on this side of the oceans.
I can't even get a doctor to put on a cast or any thing of the kind. I am still walking some on my feet because my husband had a stroke in January and he needs to be looked after. I just picked him off the floor where he had fallen trying to use his walker. You talk about acute phase etc. I have no idea what that means so I don't know what phase my feet are in. I know that my right foot is flat as a pancake, the inside edge bulges out and I can only move my big toe. My left foot hasn't fallen yet but it hurts a lot when I walk , in the ankle area, and under my foot, like I was walking on a rock..
I talked to my daughter last night about the possibilities of moving to Pennsylvania or West Virginia long enough to get surgery and recover. Now I have to find out if there is a doctor there that will accept me as a patient. I believe in prayer and I will pray for you as well as the others. Please be encouraged and keep looking for help. If I was as rich as I am beautiful I would fly you to Pennsylvania. ( That was a joke of course)...but we must keep our sense of humour, our faith, and keep asking for help. My theory is to pray like it all depends on God and work like it all depends on us.
You go, girl!!!!!!

Joyce Wasend
joycefully@sasktel.net
Outlook,
Saskatchewan
Canada

 

Dear Joyce

You need urgently to do something about your feet and not be walking on them as they are. If continue to walk on them you risk ulcer, infection, and amputation. The "rock" you are walking on could be a bone that has fallen to the wrong place.

The podiatric surgeons that have been recommended to me are:

Brent H. Bernstein, DPM, FACFAS
623 West Union Boulevard Bethlehem, PA 18018
Phone: 610-997-0408
Fax: 610-865-9458
Email: daktari6@netzero.com

(info. from Teresa and Marty whom I think you might already be in contact with)

Dr. Craig Camasta http://www.villagepodiatrycentres.com/doctors/camasta.html
and
Dr. Thomas Zgonis, UT Health Science Centre, Uni. of Texas, zgonis@uthscsa.edu website: http://www.uthscsa.edu/orthopaedics/faculty/zgonis.asp

These two above were recommended to me by my new podiatrist here in Brisbane (found via this forum).

For you, these doctors are not as far as beyond the black stump, but please don't jog there, you don't want to end up with a black stump. Good luck.

Melanie