Charcot Foot

[kdramirez]

Everyone is talking about "rocker foot" with their Charcot condition. I guess, in a way, I've been lucky as I have very high arched insteps since I was young. However, how do I keep them from falling as everyone has mentioned they do? I usted to wear high heels which kept them a bit arched, but that is definitely out of the question now. Is there anything you can do to at least slow down the dropping of the arches and getting the rocker bottom???

kathy

[Grayhare]

Rocker bottom happens when the arch finally breaks down with to many broken bones in the foot to support it. Mine never got that bad as I had surgery while I was still in the acute stage which stopped me from having this problem. Luckily my second bout with Charcot was caught with in days of it starting and was in the front joint of the same foot I had the midfoot fusion in. At the first pain I called the doctor and while it was another few months back in the cam walker this time the foot cooled down on it's own.

[kdramirez]

Thank you much for your story. So, if I'm basically in a "holding pattern" and there still seems to be an arch and no "rocker" problems. . . I'm okay? There's nothing to worry about at this point? Only should I re-injure my foot?

My problem is that I am suspecting the initial event was when I fell in a restaurant 5 years ago and broke my foot. No one diagnosed "broken bone(s)" for a complete year from the fall! After that healed up, I've been fine for four years. Then, out of the blue, my foot was a bit tender and sore . . . not what you would think a broken bone would feel like . . . and lo and behold, I had broken it again. The scary thing is, I have no idea how I did it!! So now, every time I get a tiny twinge or pain, I'm freaking out thinking I've broke something else! Anything I can do to relieve all this anxiety or be proventative/proactive with this is a BIG help to me.

Thanks again ~
Kathy

[Grayhare]

Kathy, Living with Charcot is not an easy thing. The only way I have found to be proactive is to ask my Doctor questions and then do what he tells me to. Sure there are things I still want to do and can't. I do get mad and depressed over it but it is not going to change the fact that certain things are beyond my capabilities now. Am I worrried about getting it again? No Not really if it happens it happens all I can do is follow my doctors orders and do the best I can with them. If I have done my best and get it again then there was nothing else i could do to prevent it. A couple of years ago I had a 90% blockage near my heart the doctors told me it should have killed me at first I thought every burp was a heart attack but the episode did no damage to my heart and my heart is very strong now that it is not fighting a blockage. Again I take my meds and watch my diet and now that Charcot is done have started exercising a little again and thats all I can do about it so I do worry about it. Spending to much time worrying about illnesses can lead to madness, Living your life the best that you can each day is all you can do. No it is not easy and sometimes it is horrible but no one ever said life would be fair

[kdramirez]

Thank you soooo much!! You are about the most "positive" thing I've heard since I started out with this condition!! Basically, that's my frame of mind too. But because of all the cries I've been reading about it being "so serious", so "drastic", so "sudden" and so "quickly dibilitating", I've gotten to question myself too.

I'm doing what I'm told to do and asking lots of questions. Sometimes my doctor is helpful; other times I feel he just wants me to go home. You say "when it's over" . . . what do you mean by that? I realize it never goes away, but are you in some sort of remission state once the bones have healed? I also realize everyone is different. Do you also have diabetes? I've heard stories about people not being able to walk down the hall to use the bathroom or not being able to stand in the shower because of weight bearing issues. I understand this if there is an actual break. But if you are in a non-broken bone state, how much can you actually do?

Also, you mention exercise. That is a BIG issue with me. Of course, I could stand to lose a few pounds. But more importantly, I was excercising to keep blood sugars in line. Without some sort of exercise, they have been running higher than usual. I don't have access to a pool and, if possible, am not quite ready to stay indoors and exercise in front of the TV. What options are you exploring???

(Don't EVEN get me going on the shoe issue! I had some very beautiful shoes in my closet that now have to be given away. I'm dealing with this very slowly, but know it's for the best!!)

[Grayhare]

Time for a new doctor if he isn't always ready to answer all of your questions. Right now I am not suffering from Charcot so for now it is over. I am riding a recombant bike right now, I have one at home. Walking and the treadmill is out always. Eventually i may be able to get back to the eliptical. Before Charcot I was going to the gym twice a day and my a1c was very low with no meds at all. Since Charcot my numbers have been higher but still with in a good range but have been using a long acting insulin. But considering I have been a type 2 for about 15 years now taking a small dose of insulin once a day to stay under control isn't bad.

For me because of the surgery I have problems walking up and down hills, walking on uneven or soft ground. Because of the chance of getting Charcot back I need to limit my walking. My life will never be the same after Charcot there are things I enjoy that I will never enjoy again. Things I easily did and didn't think about are now nearly impossible to do. It was my choice to have the surgery since I could no longer take being in pain and not making any head way during 6 months of treatment, This was after 3 months of misdiagnosis. I was hoping for a better outcome than I have gotten but nothing I can really do about that.

[kdramirez]

Well, I saw my doctor last night and the visit was VERY encouraging! I had insisted on an x-ray just because I wanted to know what the trip to Kenya might have done to the foot. Since I was totally unaware of when/how I broke it several months ago, I thought it best to have a base line picture to go forward on. He told me it was totally unnecessary because it looked exactly the same as before I left and the same as it did for the last two x-rays. It is healed. And without any change in appearance or swelling, it sounded like I'm at the same point as you.

When I asked about future activities, he was optomistic . . . as long as I wear the brace. Small price to pay! He said a bicycle would be great, and that as long as I wear the brace, I could even walk (cautiously) on our city streets. I'm thinking a plan of alternating walking/biking would be good so I give the foot a little rest in between activities. Also, I will continue using the bone stimulator so that if something does happen and I don't realize it, at least I am treating it immediately.

I feel so much better and uplifted! Yes, I know it really doesn't "go away" and that I will have to be cautious and watch myself, wearing my brace forever and using the ultrasound machine, but so far, it's a very positive outlook for me! Now maybe I can get my diabetic numbers back in line.

Thank you for all your encouraging words and HONEST feed back. I hope I can continue to communicate with you and keep learning new information from you.

Kathy

[Grayhare]

Hi Kathy,

Glad the doctor visit went well. I'm still not sold on the whole bone stimulater thing. The first time I used it nothing happened but then neither did anything else until surgery. After surgery I wore it again and yes I did heal well but was in that external fixator for 3 and a half months so again not sure if it helped. This last time the Doctor and I both feel I caught it quickly and got back in the cam walker so it healed quickly. For now I am just going to ride my exercise bike at home in the evening and try and get some muscle back in my legs. I see the doctor next month and then hopefully can go to a every 6 month visit.

The biggest problem is getting a doctor that knows what Charcot is after that the rest is up to you. If you spend your energy being bitter and mad or putting it behind you and move on will determine how you recover from it. Right now more than anything I would love to be able to go to the beach tomorrow But that is just not going to happen. Sure I am mad about it but that is not going to change the fact that I can't walk to well on sand and my legs aren't strong enough to be able to walk into the ocean anyway. So I just need to deal with the fact that the beach is not something I can enjoy anymore.

[kdramirez]

I'm interested in the types of "walkers" or "casts" you are referring to. Originally after the break, the dr. didn't "cast" it, but wrapped in stiff Ace bandage and had be in a big "walking-type boot" with velcro that, I suppose, kept a lot of weight off of the foot. I also used crutches for about 5-6 weeks. Then, just the "walking boot" untill about 8 weeks. Then he had me in this Arizona brace that is a custom made brace to foot the shape of my foot/ankle and is out of leather and laces up.

I've heard all sorts of words concerning casts, boots, orthos, etc. Can you shed any light on any of these options/devices being discussed??

[Grayhare]

I had a cast for a while then got a cam walker which is a soft sided boot held on by 6 velcro straps and then a crow walker which is hard plastic, has 2 velcro straps and the inside was custom molded to my foot. That is all I have worn now am in shoes with custom inserts in them.