Decisions, Decisions, Decisions

[curt]

I have two Charcot feet/ankles with resultant deformities.  My left foot is in a crow boot (removable cast) and the right cannot bear weight  The right foot has had a couple bones, that broke/dislocated during the major Charcot event, removed.  For the last few months, various doctors have been advocating amputation.  Obviously, I have resisted to this point, but I just came back from a visit with an orthopedic surgeon (specializing in feet & ankles) who said several things:

1) - My foot is coming apart.  There is a 50% chance he can fix it - 6 to 8 months total recovery time.
2) - Even if he hits the "home run" and the surgery works, I'll still need a crow boot on the right foot, which would mean a crow            boot on each foot - which is very nearly untenable.
3) - He cheerfully admits the pragmatic solution is to amputate and get on with life.

Since the world of amputees is a complete unknown to me, my questions for you folks are:

*    What is life like during the 1st months while the stump heals?

*    I'm sure that my Blue Cross HMO will have an opinion, but what kinds of legs and connections are available?
*    If I have a choice which should I choose if I opt to lose the foot?

*    Are you able to go a full day with your leg(s) on?

*    Would you opt for 1 prosthetic leg and 1 knee high cast or two prosthetic legs?

*    I will be 73 very soon - does this change your answers?

*    What else should I know?  What would you do were you to be me?

[cherylm]

Hi, Curt, and welcome to the Forum! I can offer you my own story...history of many, many foot problems with many, many surgeries prior to an elective amputation. I was younger than you are at the time of my amputation (50) and while I had an eventual Charcot episode on the foot that was ultimately amputated, it didn't play a major role in the beginning and was only a minor consideration at the end. Soooo...I'm "kind of" comparable to you, but not entirely so.

When I finally decided to go ahead with an amputation, I'd been battling foot problems on my right foot for three years and my left foot for a year and a half. The left foot was the most severely injured, but I had constant pain and mobility problems with both feet. Spent multiple months in a moon boot on alternating feet, depending on which one had been through the most recent surgery. Ultimately, after four unsuccessful attempts at repairing a fracture in the let foot, I was offered two choices by my doctors which were somewhat similar to your choice. One: we could attempt one final repair on the fractured bone, set my foot in a permanent cast at an extreme angle for around a year, slowly straightening the angle slowly and recasting over and over again until--sometime in year two--they'd try removing the cast, putting me in a brace, running me through physical therapy to see if we could strengthen the ankle, and then hope and pray that it wouldn't all just break down again...or else we could just lose the foot and get me into a prosthetic leg so that I could get on with my life. After that many years in pain with long hospital stays, I chose the amputation. For me, it was one of the best decisions I've ever made. Seriously. It's had its share of adjustments and occasional problems, but I've had a basically average, reasonably active, and more-or-less pain free life for the past 13 years.

In answer to your questions...I'm going to start by telling you something that sounds like a "cop-out," but it is the truth...there is no such thing as an "average" amputee experience. There are so many different types of surgeries, levels of activity, health issues, ages, genders, lengths and conditions of the residual limb/stump, skin conditions, you name it...each amputee is his or her own special case. You can make some basic assumptions, but they may or may not be true in your case. Nonetheless, here are a few of those "basic assumptions" and some advice as you try to make your decision:

After a fairly short time (maybe several days to two weeks) you could find yourself not too concerned about postoperative pain. For most folks basic medications can handle that issue. Your primary problem in the beginning is post-op swelling, which can be uncomfortable and can delay fitting you for a prosthesis. You spend a fair amount of time alternating between elevating your leg and doing physical therapy exercises.

Depending on your swelling and the speed of your healing, your prosthetist may be able to start the casting process for a new leg somewhere around the two month point...but that one can vary a LOT. I've known folks who are up and learning to use their new prosthesis at two months, but in MY case it was a full five months before they even started the casting process. Then there is a break-in period to adjust to wearing the prosthesis, and that is NOT something you can try and rush through. It will feel heavy and cumbersome at first, and until you build your energy up it can be tiring. However, once you've adapted, it's quite possible to wear and use your prosthesis for a full day...I wake up and put on my leg and it doesn't come off until I go to bed at night.

Remember that "every amputee is different" business? No-one can recommend a type of leg, sight unseen, to a new amputee. I'd suggest that before you even decide about the amputation you arrange to meet with a prosthetist who has had experience with patients of your age and condition who also has a history of being able to successfully cast and fit for the level and type of amputation your surgeon is recommending. Talk with them in depth about their experience and ask them what they might recommend for your situation. If you can meet one of their clients who is similar to your situation, so much the better. Be very open about your questions and concerns and make sure that this prospective prosthetist is someone who answers your questions clearly, listens to you closely, can explain the reasoning behind his decisions...and is someone with whom you feel very comfortable talking about EVERYTHING that might concern or confuse you. This person will be a major part of your life for a long time to come.

Once you decide on a prosthetist, have him lay out a few options for you and then decide on your components together. As you become more experienced as an amputee you will be able to make more educated decisions about what will work best for you.

I'd definitely start with only one prosthetic leg, until you see how well you can function with it. A double amputation can be very daunting in the beginning and will always require significantly more energy than a single amputation. How much pain do you have from the leg in the cast? How much mobility do you have with that leg?

Your age could be an issue...I don't think it would change my answers because you say you've already had doctors recommending the amputation so I'm assuming that they think your health is up to it. However, there's a fair amount of work that goes into amputee life and only you can say whether you think you have that determination. To me, your current status doesn't sound tenable...but again, that's for you to decide.

I hope all of this gives you a few answers and something to think about. Do explore the different threads here on the forum and ask any and all questions that come to mind...at this point in your decision there is no such thing as a "dumb" question!

[curt]

Thank you for your time.  That was quite a missive which has already helped.  Hadn't thought much about all the problems that could arise in the stump healing phase.  I probably will not get to choose my prosthetist; for my HMO it's a low price bid thing.  I've got to see him pretty quick to refit my left leg crow boot.  Started that early 2013 and wore it for 2 years.  Then they moved me to inserts which apparently did not work well enough.  Now x-rays say I have to go back to the boot.

[stonecutter]

I have nothing special to add to cherylm's excellent response other than to welcome you to the forum and I hope you'll keep us posted on your 'adventure'. You've been through a lot

On the age thing - I think it depends on your personal conditioning - one of the most inspirational amputees who helped me with the mental aspect of becoming an amputee was a retired train locomotive engineer who, at the age of 92 was recovering from his second below-the-knee amputation due to complications of diabetes. His first amputation had happened in his 70s, and he said he was simply getting the other "trimmed to match". This man was amazing! He had an incredible outlook on life and was truly more active than I was and I was 19. He lived to be 98 before passing on. Incredible man...