Re: seeking opinions

[Guest guest]

,

Something doesn't sound right. But bear in mind where I am coming from

with CMT. If your bone isn't healing after this time, has anyone

thought about supplementation with calcium or magnesium (injections I

mean) or what about bone growth factors?

Have you had the rest of your bones checked? Before my back fusion,

all my bones were checked, both manually and by tests and all

were 'fine'. This is extremely important for a fusion - of any kind.

Check out the different fusion techniques too, also consider some

other qualified medical doctors. Like I said, something doesn't

sound 'right'.

If your bone hasn't been healing, and is now immobile, what's this doing to your

muscles? What part has PT played in all of this, if any?

~ Gretchen

[Guest guest]

I'd definitely find why the bones aren't healing before letting them attempt an

ankle fusion. You never said what the original surgery was to correct. It could

be they tried something in lieu of the fusion that you really didn't want, and

it's not working. Anyway, if all is well otherwise, don't worry about the fusion

inhibiting you. I just had a foot and ankle fused, and the foot works better

than it has in 10 years. I've got balance again, and can wear any kind of shoe

again. Your 4th decade is when you begin to find out what CMT is all about, your

body is going to change.

Ed

[Guest guest]

My mom had her feet fused when she was a kid - it was

an experimental proceedure then. She is mobile w/ braces.

This was a mirical proceedure for her because she was

unable to walk before the surgery. Hope this helps.

Get well!,

Chris

[Guest guest]

P,

So sorry to hear that your Charcot condition is not improving. In my case, the

Charcot condition was in the bones of the midfoot. They were so brittle and

broken up that there was nothing to heal. I too did the non-weight bearing/cam

boot routine and the condition continued to get worse. It didn't take long for

my decision process to proceed from " do I need the surgery " to " do I trust the

surgeon to do the work " . In the end, I did trust him to do a good job and he

did. He replaced some of my bones with grafts and fused it all together. Only

the foot was fused though, I still have some motion in my ankle. It's not like

the original equipment, but it's much better than a broken foot. I asked the

surgeon how stable the fused foot actually was and he felt it was stronger than

my other (original) foot, and should last the rest of my life (I'm 51 now).

Several years ago I was treating a level two wound on the bottom of my big toe.

The podiatrist suggested I start taking MSM (Methyl-Sulfonyl-Methane), saying it

promoted cell growth. I took it all through healing from my fusion surgery and I

believe it really helped. I know the surgeon let me start walking weeks before

the time he originally told me I'd be walking.

Best of luck with it and please keep us posted on your progress.

O

[Guest guest]

,

I, too, don't understand what you mean by the bone

problem & not healing. Did you have just an " arch

flattening " , i.e. did they cut out a wedge of bone

from the arch?

That was one of the three things I had done,

simultaneously and bilaterally, in 1976 when I was 21.

I'm now 52. Immediately before that I was having

constant and agonizing " shooting pains " in both legs,

especially in the calves.

I was able to go back to working on my feet in a few

months and did so until '78 when I got a better and

sedentary job. The ankle fusion was enough until '94.

It was then that I started wearing AFOs.

Have you checked your doctor's credentials with the

state licensing board? I never had any problems with

my doctors, but I never checked their credentials

before I saw them. Not that your doctor has erred,

just a suggestion for you to consider before you

proceed.

Ephraim

[Guest guest]

Charcot Joint Disease and Charcot Marie Tooth's Syndrome are two

different conditions. CMT can be an underlying factor in Charcot

Joint.

For more on Charcot Joint Disease see:

http://www.healthcentral.com/encyclopedia/408/204.html

[Guest guest]

Understood. I appreciate the article, I prefer this one from the American

Orthopaedic Foot and Ankle Society.

http://www.aofas.org/i4a/pages/index.cfm?pageid=3316<http://www.aofas.org/i4a/pa\

ges/index.cfm?pageid=3316>

Thanks to all for your notes, for clarity, I have not had any surgery of any

kind yet. My Charcot joint is in my " hind " foot and the situation I am facing

is that the microfractures in the joint are showing no signs of " knitting " back

together on their own and the ankle is very unstable just now.

I am very impressed with my Ortho Dr., mostly by her distress that we are facing

surgery, she was hoping that the joint would resolve in a stable fashion on its

own. In my book, anytime you find a

surgeon that wants to do everything possible before cutting is a keeper.

Again, thanks to all for your replies and concern. I'll let you know how things

turn out. This group has been a great comfort. I can't tell you how many times

I have said to myself " oh, someone else

experiences that too ! " Very valuable when so few have even heard about CMT and

even the Dr's have very little experience with patients with the disease.

[Guest guest]

Hi :

I have had three fusions on the same ankle in four years and have the fourth one

scheduled for June 27th. I too originally started out with the bone fragmenting

away and instability - hence the fusions.

I also took a terrible fall five years ago that really finished off the

ligaments/tendons in the ankle. The fusions have typically lasted about 6 mos -

1.5 years before the fusing crumbles, pins break and I am back at the doc's.

I am now on my third surgeon and I am praying she knows what she is doing. I

did check out credentials, got referrals and felt

comfortable with all of these surgeons.

Unfortunately, this disease can take on a life of it's own is never standard

textbook even within the same family. The ray of hope here is that this surgeon

suspects the problem may be in that the previous surgeons have been using part

of the fibula as a bonding agent. She says this bone is probably not as healthy

due to poor circulation and she will be using a portion of the hip bone instead.

This hospital is a teaching facility and so I

think she may be more progressive than other physicians in the area.

I was also impressed that she spent several weeks researching alternative

procedures, took my records to a medical conference and got other opinions and

spoke to the previous surgeons about my surgeries, progress, etc. Anyway, just

wanted to share my experience with you. I fully understand where you are at

with this, as I think I'm in the same boat.

in AR

*Note - I have always been non-weight bearing for 3-4 mos after these surgeries.