Charcot Foot

[livingwith]

I have had charcot for over 8 years and used a crow walker for more than a year and a half on the charcot foot I now am wearing Arizona braces on both feet. The braces are hot, especially in the summer and your clothes don’t fit too well over the braces. And, yes, the special shoes are definitely UGLY! But being a Type I diabetic since I was 10, I consider myself fortunate to still have both of my feet. There are times the charcot foot hurts so bad.
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[deadhead9]

I am looking at being in a CROW walker for CHARCOT in a few weks. Altho my ins co claims they will pay for this "if medically necessary" both my orthotist and I are sceptical of this. I will be getting one with a patellar bearing adaptation. My FIRST question is-- does anyone have the faintest clue what this MIGHT possibly cost? I realize there is a LOT of difference out there on these things but I hope to have a ball park idea if I can before I have to return to the orthotist. Don't want the poor guy to have to do CPR on me!
My second query is-- does EVERYONE have a hard time geting diagnosed with this? I fell shortly before getting on a plane to attend my mothers funeral. By the time I finished sitting for about 23 hours in cars, airports etc my left foot was swollen and I had a tiny purple "rub mark" on my pinky toe. As a diabetic who has already had a transmetatarsel amputation on the right foot of course I immediatly rushed to the local ER- in a MAJOR city. I was treated with contempt and ignored and my pleading for a simple x-ray was totally ignored. As I had been dropped off at the ER I was stuck there. Dr. INSISTED that this was an INFECTION. After many many hours I finaly got some antibiotics just in time to get out of there but not until they admitted me- more money for them! So I kept gingerly walking on this foot with my usual cane. Went home a few days later with an enourmous pillow to support my foot, went directly to my reg MD- a diabetic himself!- and again was REFUSED an x-ray. Was barely creeping around my home clinging to furniture when I called MD and told him either he ordered an x-ray or I was going to find another Dr that would, I could HEAR something moving inside my foot! The x-ray tech was so upset at the way my foot looked, and the lack of an order for a "STAT" reading (which I had been told I had by MD's office) that he got one of the x-ray doc's to come and look. I had broken both the foot and ankle. Got a cast and was told to follow up with an ortho. Saw an ortho in the same office as our family's prefered ortho, our guy was not avail. This guy was soooo nasty and totally unsympathetic, basically told me that I would never walk again and I should go home and wait to die. I am not the give up type and managed to get him to Rx a pair of "space shoes". When I went to the orthotist I was told by him that "Arizona braces" were the ticket here, and the shoes. After weeks of wrangling with my ins co I finaly paid for the shoes MYSELF- the ins co INSISTED they were $2000--- turned out to be $90. The braces were over $3000 and they PAID for them tho! Was afraid to wear the braces when I discovered that the heel openings and the behind the toe edges rubbed. So I wore the shoes--- for an HOUR. And the shoes ATE MY FOOT. Caused a large blister forward of the heel that was looked at by both my reg MD and my prefered ortho (with in hours) and pronounced "superficial". Well I am here to report that 4 surgeries and a skin graft later, TWO hospital stays of over 10 days EACH, and finaly getting help from a teaching hospital TWO STATES away which finaly gave me the VAC treatment I NEEDED to close this thing I am at least ready to begin using a CROW. Meanwhile for the past 5 MONTHS I have been using a devise called a knee walker which you perch your "bad" leg on and push around with your good leg. Beats a wheelchair and gets you upright altho it does have some limitations. I am wondering if this is simply not taught at medical schools or is just something that is not well known-- all of the med personell I have spoken to during this seem to know what it is tho. Very hard to accept that IF this had been x-rayed right away and a cast put on I might have been spared pain and also migration of bone, something that might now NOT be able to be surgically "fixed",and might need to be amputated below the knee at some point. I am putting a LOT of faith in the CROW now I guess. Aybody care to tell me what the CROW is like to use? Any help or advice greatly appreciated!