huge decision to make

[jimmi308]

My name is JC and I found this site,because I have a severe case of charcot in my foot. And the chance of repair is very very slim. Actually  below knee amputation is more likely, and I'm scared shitless. but I am in pain everyday and its been over a year and a half of dealing with the pain. Ive been told I could have a better quality of life with the amputation. Im just tired of being unable to do any activities as well as the pain. any advice would be amazing. Thanks

[cherylm]

Hi, JC, and welcome to the Forum. So sorry you had the need to find us, but I'm also glad we were here to be "found." You are facing a major decision, but please know that, if you're spending your life in pain and not able to be out and doing things, you might find a below knee amputation a distinct improvement. I become an elective below knee amputee fourteen years ago...mine was due to an infection that set in after several attempts to repair a broken foot, although I also did have a bit of a problem with charcot foot as well. I went through several surgeries on bot of my feet over the course of three years and spent most of that time non-weight-bearing and in a lot of pain. When my doctors gave me a choice--one more try to fix the broken foot, with a projected healing time of another two-plus years, or an elective below knee amputation (my choice as to which treatment we tried), it took me less than a day to choose the amputation. It was the turning point for me, and I've never regretted the choice.

In my case, when I woke up after losing my leg I was in the least pain I'd felt in AGES...and while it was a long and complicated healing process, my life WAS back moving in a positive direction. I've never looked back, and I've been able to live a relatively normal and basically pain free life ever since.

But this IS your decision to make. It's a permanent one...that leg is not growing back. So give it a lot of thought. See how many folks you can talk to about it...surgeons, prosthetists, and especially other amputees. If you can make contact with someone whose medical history is similar to yours, someone of about the same age and physical condition, that would be ideal. Check out some of the threads here and on other amputee online sites...while you may well feel like "the only one" right now, there are others who have shared your situation and may have practical advice.

Have your doctors given you any other options for treating the charcot? What have you tried for it so far? Has anything seemed to help at all? What is your overall health and physical condition like? If the complications from the charcot have left you out of shape, make a point of working at increasing your upper-body strength prior to any amputation surgery...you'll be glad you did. If you can also work on strength and balance in your non-charcot leg, that would be great. If you decide that amputation is your best opportunity to get your life back, do everything ¥ou can to prepare in advance to do the work to get your life back. Give yourself every advantage you can to recover well! And do post here and let us know what's up with you and how you're doing...we're a good group, and we'll be pulling for you!

[stonecutter]

Hiya JC.

Welcome to the forum.

I just wanted to second everything that cherylm said. It's a great response.

If you have any questions that may help you in forming the basis of an opinion - please feel free...

[lturn9]

Thanks for posting the compelling answers to JC's predicament. I am in a similar position and came here to find answers to some of the same questions he asked. In addition to JC's questions I am wondering about the age problem. I am 69 and have had 4 knee replacements on my left knee. Surgeon says it's only a matter of time before this one fractures.
While I am in pretty good health otherwise, I do have Neuropathy in both legs which causes lots of pain. I plan to get another opinion but this is my 4th Ortho Surgeon and supposedly the best for problem knees in this area. During knee replacement the bones are trimmed to provide the best fit. Well after so many operations my left leg is almost 4" shorter than my right. I have a special shoe but look like a woman who is learning how to walk in heels! I fear my ankle might break. One option given would be to remove my (good) hip and run a straight rod to my foot without any knee operation. Also, it's another major surgery, hard on me and my wife as well. I don't like that option much. Option 2 is an above knee amputation. A prosthetic leg would solve the height problem and while removing the leg might help my neuropathy pain, it might not. Phantom pain is very real as the nerves will still be there. My surgeon said older people like me often fail to accept an artificial leg for various reasons and end up in a chair for the rest of their life. I'd like to know if others had trouble using their new leg? Did it cause pain? Discomfort? other consequences?
Any info is appreciated.
Should I start a new thread elsewhere? (I don't want to hijack this thread)
TIA

[anina]

I made the option to cut the leg, made a year, I am very happy with my option.
Listen to valid opinions (when I say valid, I mean those who really know about it), and then decide without pressure.
It is not complicated to live with a prosthesis, I live alone, on a 4th floor, no elevator, and I have a Terranova.
Good luck with your choice.