Charcot Foot

[kdramirez]

I was just this week diagnosed "officially" with Charcot Foot/Joint, although I seem to have been suffering symptoms for 5-6 years. I have had several small breaks in both my feet, but mostly the left. I'm still in a semi-state of shock over this and am having a hard time believing it.

One thing I keep reading is that it is a "progressive degenerative" disease. Does this mean it never gets better? It only gets WORSE? or can I hold it at bay in a current "holding pattern"?

Can anyone share with me the future prognosis for me? I'm still able to walk fairly well with no pain, except for the broken bone(s) which is mostly healed. I just would like to know a little more of what my future holds and what I can expect of this disease.

Kathy

[Firekat]

I dont know about you, but keep your spirits up, research and get a good podiatrist and orthopedist who are willing to work together. but be prepared to start dressing "goth" if you wind up in crow boots. I call mine my "frankenstien boots" I have charcot in both feet, and my left foot and right ankle are deformed, to the the point that i can no longer wear any kind of normal, "Girl" type shoe. it sucks. I just thank god for my power chair, that lets me get around my house easily. I hope things go better for you. Good luck!

[kdramirez]

thank you for the encouragement. There are lots of people giving me good advice out there and I so appreciate it. I'm researching several options now, and have a list of questions for my podiatrist. I may even get a second opinion . . . not to question his diagnosis, but just to maybe find someone who has some different information. At least I haven't been told I can't take my trip to Kenya in two weeks. I just have to wear my boot/brace. Small price to pay . . . !!

Good luck to you and thanks again for sharing.

Kathy

[nepaica]

[quote="kdramirez"]I was just this week diagnosed "officially" with Charcot Foot/Joint, although I seem to have been suffering symptoms for 5-6 years. I have had several small breaks in both my feet, but mostly the left. I'm still in a semi-state of shock over this and am having a hard time believing it.

One thing I keep reading is that it is a "progressive degenerative" disease. Does this mean it never gets better? It only gets WORSE? or can I hold it at bay in a current "holding pattern"?

Can anyone share with me the future prognosis for me? I'm still able to walk fairly well with no pain, except for the broken bone(s) which is mostly healed. I just would like to know a little more of what my future holds and what I can expect of this disease.

Kathy[/quote]

Sorry to tell you this but yes, you will never get better. If you are lucky your situation will stabilize but it can suddenly hit again and deteriorate your bone structure quickly. This is what happened to me. I had it hit the left foot first. After 9 months with crutches and a boot it stabilized and has been ok ever since (3 years ago). However 18 months ago it hit my right foot. I now have a severe case effecting my ankle. Surgery is loooming for me. My best case scenario is that they are able to fuse my ankle to by tibia with the the help of a pins and an external fixator. After being out of commish for 3 months my reward will be that I can walk with a crow boot. Returning to a normal shoe or even using a brace that can be tucked in a shoe has been ruled out. The worst case scenario is that I loose the foot.

This is one terrible disease. Good luck.

[kdramirez]

So . . .if I'm understanding your case . . . you CAN stabilize it, but any "trauma" to the foot starts the degenerative process again? It doesn't "degenerate" or "deterioate" once you get it? It has to have the trauma to start this process???

[nepaica]

[quote="kdramirez"]So . . .if I'm understanding your case . . . you CAN stabilize it, but any "trauma" to the foot starts the degenerative process again? It doesn't "degenerate" or "deterioate" once you get it? It has to have the trauma to start this process???[/quote]

Unfortunately for many people including myself my truama was just normal walking. I didn't have anything happen like a trip or fall. With regard to my left foot, we were in Disney World and one night we returned to our room after having walked the park all day, I took off my shoe and my foot was 3x its normal size. With regard to my right foot I walked a couple of miles on my treadmill and the next day my foot hurt like hell and was very swollen.

[peds64nurse]

Good morning,
Everything I have researched & read (both paper & online), spoke with NUMEROUS Dr's... it is only going to get worse.... I was Dx'd approx 5 yrs ago... (I am 45)... I have noticed the differnce in the way I walk (had to get the Arizona Brace to help me walk), now my knees & hips hurt on a constant basis due to my gait being off centered & most recently my hands & wrists have so much pain in them that I actually went to a HAND SPECIALIST.... (could not do anything)... I have seen a rheumatologist in the past... nothing they could do either... I am a nurse & on my feet for most of the day...
I had / have to continously EDUCATE my primary care dr... no one in his practice had a clue what CMT was... there is a great website, besides this one... (found this by accident)...
WWW.CMTA.ORG they have great info on there as well as a newsletter...
hate to be the bearer of bad news..... but, i am learning everyday how to cope with this crazy dx...
Good luck to you,
Tami
PS I live in maryland, the CMTA does not have any support groups in MD... but, look at there website when you get a chance... they may have a group / forum that you can join in your state.

[nepaica]

If you got to WWW.CMTA.org you get:

The California Municipal Treasurers Organization

[nepaica]

[quote="peds64nurse"]Good morning,
Everything I have researched & read (both paper & online), spoke with NUMEROUS Dr's... it is only going to get worse.... I was Dx'd approx 5 yrs ago... (I am 45)... I have noticed the differnce in the way I walk (had to get the Arizona Brace to help me walk), now my knees & hips hurt on a constant basis due to my gait being off centered & most recently my hands & wrists have so much pain in them that I actually went to a HAND SPECIALIST.... (could not do anything)... I have seen a rheumatologist in the past... nothing they could do either... I am a nurse & on my feet for most of the day...
I had / have to continously EDUCATE my primary care dr... no one in his practice had a clue what CMT was... there is a great website, besides this one... (found this by accident)...
WWW.CMTA.ORG they have great info on there as well as a newsletter...
hate to be the bearer of bad news..... but, i am learning everyday how to cope with this crazy dx...
Good luck to you,
Tami
PS I live in maryland, the CMTA does not have any support groups in MD... but, look at there website when you get a chance... they may have a group / forum that you can join in your state.[/quote]



By the way Carcot Foot and CMT are not the same disease.

[kdramirez]

So do NOT use www.CMTA.org? Use something else? What does "CMTA" stand for? and is it the same as "Charcot"??? I could really use a support site!!

Kathy