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Heather Mills - Amputee Forum
Lucas-five

Hello to all!

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After reading many of the posts here, I must say how moving and motivating many of your stories are. I can only imagine what all of you have been through and I am truly grateful to be given the opportunity to join this group. First my history. Back in 1985 I had a benign tumor removed from my right knee. Unfortunately, the surgery caused some nerve and muscle damage that resulted in slightly limited mobility to my right foot.

I have coped rather well until about a year ago when after what I thought was a minor injury to that same foot has really changed things. Although there was no detectable bone break, there was substantial injury to both the soft tissue in my foot and tendons in my ankle. I have tried rest, physio, multiple types of pain killers, acupuncture, shoe inserts, braces all to no avail. I have been told by several different doctors that there isn't really any surgery that will repair it. I now live in constant pain, have a persistent limp and often cannot even put any weight at all on my foot. I recently spoke to a woman who works at a local drug store about my condition and she mentioned how she was in a similar circumstance until about 5 years ago. I was both shocked and impressed with what she revealed to me. Her condition was so bad that she ended up choosing an amputation of her foot through the ankle. She now works a regular shift pain free and is very pleased with her decision. Although I first thought it was a drastic move, as I continue to battle my condition I often think of her solution to her pain.

Now,I have discussed amputation one doctor. He deemed it a bit too drastic for now but never offered any better solution. I spoke to my wife and she is in favor of it if it means an end to my pain, but I also want to hear from you out there. Is there anyone on this site that was faced with a condition like mine? Would my quality of life improve with amputation?

Again, thank you for reading this and I look forward to your replies.

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Welcome to the forum Lucas. You will find many people here from around the world. Unfortunately you will find just as many answers to the same question.

You've posed a very hard question for any of us to give you a definitive reply. Elective amputation is a tough decision that many of us have made, myself included. Many people here had no choice. They either lost their limbs to disease or such trauma that they had no choice. It's a mental blow no matter which way you came by it. Age and general health can affect the outcome.

Instead of advice on what you should do, I'll just tell you about why I chose amputation. I was cleaning a 12-gauge shotgun that I thought was unloaded. The cleaning rag caught on the trigger which caused lead shot to fill my heel. I went through a debriding surgery that night and another one a few days later where they also installed an external fixator. The calcaneous was completely blown apart and removed. None of the docs could tell me how I would ever be able to walk normally again. I was talked out of amputation by the plastic surgeon and my nurses. I told my wife that I was ok with this as long as they didn't want to do more surgeries. The plastics doc was talking about multiple surgeries over the next 12-15 months with no guarantee that amputation would not be the end result.

Three weeks later the plastic doc wanted to start grafting muscle and skin from my stomach and thighs. I had since done some homework on amputation. I knew I could be up and about and back at work much sooner with little or no pain. I told him that I had made my decision to amputate. His jaw dropped to the floor. I went back to my orthopedic doc, told him my decision, and was scheduled for surgery the next week.

They amputated on April 5. I went back to work on May 4. I got my first prosthesis on May 20 and haven't looked back. I won't lie by telling you that the past 7 years have been pain free. I've had my share on down days, but I've never regretted my decision. I don't even know I have a fake leg most days. I wear my leg from 4AM-8PM every day. I cut hair so I stand all day. I have a commercial paper route where I carry some heavy loads. I take care of my invalid wife. I mow the yard, do the laundry and keep the house clean. I've literally done everything I set out to do. I only say I can't do something when I really don't want to. Don't let my family know that. LOL

That is my story. Each of us has a little different one. Some here are plagued with phantom pains. Others have constant stump pain. My pains are usually caused from neglect. We have to use socks to take up the void as we shrink during the day. I am one of the worst at adding a sock. This has caused me a great deal of pain in the past. I think I've reached a point now where it really doesn't make a big difference. The way the leg fits can make or break your day.

It helps if you have good insurance. Check your policy for it's coverage on "Durable Medical Equipment". That is where prosthetics are covered. Some cover well. Some not so much. A below knee prosthetic leg will cost from $8K to $20K depending on what foot, cosmetic cover and type of socket you get. It's mostly the foot that adds up. You can choose from a basic SACH foot which is essentially a 2X4 covered in plastic. Or, you can choose a new computer assisted foot that will run you upwards of $12-15K. Myself? I usually go with a durable, carbon fiber foot made for high activity. They are around the $6K range.

Someone else will surely chime in. I hope we can help you make an educated decision.

Neal

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I like your description of the Sach foot, Neal! I actually do have one in my "leg wardrobe," and while it does what I need it to do, it truly is a "plastic-covered two-by-four."

Lucas, I also elected an amputation after spending several months and multiple surgeries attempting to repair a bizarre fracture of my left foot. It did away with my pain issues (almost) completely and greatly improved my mobility. I certainly don't regret it. However, removing a portion of a limb is pretty darned permanent, so be very sure of what you're doing and why you want to do it.

I also had a serious injury to my right foot at about the same time, and that one WAS successfully repaired surgically (a tendon graft, several new tendon anchors, and my calcaneous--heel bone--was sawed off and bolted back on in a new and interesting position). It was a heck of a lot of surgery, and it took many months to recover from it, but it's served me well for over seven years now. So if you have access to a really, really good foot and ankle surgeon, you might want to check out some "more innovative" surgical repairs prior to amputating. If all has been done, then amputation can indeed be a "good choice."

Take Neal's advice on the insurance issue...it can make a tremendous difference. And be aware that while many of us do not deal with much in the way of phantom or stump pain issues, some folks DO continue to face pain on a daily basis.

Ask any and all questions you can think of here...we have lots of opinions, and they may be helpful in reaching a decision that's right for you.

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Welcome to the forum! Sorry you need to be on here. :)

I'm fairly sure no one on here can or will tell which way to go, just give you our experience. I chose amputation from a condition pretty similar to yours, I had a tumor in my spine that left me with a severely limited left foot and a slightly limited right foot. I to dealt with it for many years, 8 surgeries and countless sets of braces, inserts, orthotic shoes, you name it we tried it. It became so painful that I started using a wheelchair for everyday activities. That was the breaking point for me, I made the appointment and told the doc I was done dealing with it and wanted to amputate. His response shocked me more than the thought of actually going through with it, he said I thought we should of done this years ago. He never not one time ever brought it up as an option until I asked. I had a below knee amputation about six months later and never looked back. In fact my fake leg is so much stronger and responsive than the real one I do still have,(still have to wear a fixed AFO brace on right leg).

Like Neal the only pain I get is from either my own doing or a loose fitting socket, both of which are a guarantee for all new amputees. Its not always easy but it certainly is better than a life of disability. Great advice from Neal on checking your insurance coverage! This stuff aint cheap even with a good coverage plan. I would also go talk with a few different prosthetist prior to making a decision. This will need to be the best relationship next to your spouse or family. With a leg guy who listens and is willing to put up with even the dumbest of questions/ideas you can accomplish anything.

One of the best things i ever found on this site was an article written by Jberna titled You've already lost it. It completely summed things up for me. I tell people who ask how could you make that decision, I was in a wheelchair/crutches with a foot that I couldn't use, if amputation didn't work i was going to be in a wheelchair/crutches with a foot I couldn't use. If it worked though I would be back to a whole bodied person. Good Luck with your decision.

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