Does anybody else have Charcot syndrome from diabetes and lost their lower legs?

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schrek-chewbacca hunk
Veteran Member

Date Joined Jun 2005
Total Posts : 2666
   Posted 10/13/2009 9:43 AM (GMT -7)   
I have reached the end of two years of surgeries (12) to correct charcot fractures due to diabetes and steroid use over time for Ulcerative Colitis.  I am in 50/50 chance for success with a walking cast worn for 6 months.  I have gone to a specialist in this field in Georgetown University who developed a solution (whom I have met).  It has not worked for me.  I am generally controlled.  But I am petrified over losing my lower (below knee) limbs and prosthtics.  I know they have a long way in articulated prosthtics - but I am so scared and grieving.  I am 51 and too young to live in a wheel chair and watch TV all day.  Please, anybody who has gone through this help me.  I used to be a forum leader in UC, and am active in the ostomy board - but I really need help here now.
With love to all, please help me borrow some strength from this group.

Lanie G
Forum Moderator

Date Joined Nov 2006
Total Posts : 6026
   Posted 10/13/2009 7:25 PM (GMT -7)   
Bob, I have not experienced this and I hope you can get through this with your legs intact.  There is another member, Linda, who is in a wheelchair because she had to have her legs amputated but she seems to get around pretty well, especially after some modifications of her house.  I believe hers were amputated well above the knee.   I hope she comes back and responds.  I don't know how to give you strength except that we are here to listen at least.   Here is a video that has helped me when I wish some things were different in my own life.  No matter what happens, you can finish strong, too.

Post Edited (LanieG) : 10/13/2009 8:38:24 PM (GMT-6)

Wheelchair Bound
Regular Member

Date Joined Dec 2007
Total Posts : 84
   Posted 10/15/2009 11:35 AM (GMT -7)   
Living life without legs is not nearly as bad as what you might think.  I lost both of mine more than a foot above my knees in December 2007, I was only 46 when it happened to me.  The time I spent in pain and unable to walk much at all for six months before they were amputated was much worse than having no legs now. The first three or four months after they were gone were pretty rough.  You learn quickly what you need to do to get around or perform your daily tasks.  There is one thing I need to share.  Once my legs were amputated 90% of the pain was gone.  Once they healed completely, (about eight weeks in my case) I had no more pain.  This allowed me to get a good nights sleep and be much more productive than before. I also have vision problems, legally blind from my diabetes.  I am able though to do some part time secretarial work from my home.  My husband and I still go camping and fishing like we always did before.  It's a good thing we bought a pontoon boat about eight years ago instead of another boat.  I am able to wheel myself, sometimes with my husbands help onto the boat and have a good time.  If I were in your boat knowing what I know now I would just have the doctors amputate them both right now and save yourself years of pain.  Even if they need to take them above your knees, the prosthethic legs they have now are very good.  Most likely you would be walking in less than the six months they want you to have the casts on for.  Good luck in whatever you decide to have done.  Take it from me though, life goes on without your legs.  You just need to be strong and make the best of it.  Having to use a wheelchair like I do isn't so bad either.
Wheelchair Bound/Legless Linda/Linda
Double leg amputee from diabetes and circulation problems. Legally blind, low vision problems.

Veteran Member

Date Joined Apr 2004
Total Posts : 6056
   Posted 10/19/2009 11:04 PM (GMT -7)   
So sorry you are going thru this... But as Linda says it's not the end if your legs have to go. She has been here with us since before her surgeries and although it hasn't been all flowers and sunshine she has been one of our best inspirations on this forum. She just keeps on trying and trying until she gets to where she can do things. Even when she is feeling down she usually has given herself a pep talk by the end of her post. And as we told her, we'd much rather have her here in her new, wheeled version than not at all!

You are not your legs. You will get thru this just like you have handled UC and every other obstacle in your life. You will still be the same generous, kind, humorous guy you have always been whether you have your old legs or a brand new set. We are all in this with you and we will be here if you need to gripe or rant. Sending prayers and good thoughts your way. Take care.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross

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