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Heather Mills - Amputee Forum
Keith

Decisions Decisions

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 Hi, everyone. I found this site while researching elective BKA for foot and ankle issues. I have been looking into the good, the bad and the ugly concerning such a decision and I am no closer to coming to a conclusion than when I started this process. I guess this is the part where I should explain why I'm at this junction. In 1977 I tore the ligaments in my left ankle while playing street basketball in my senior year of high school. Not a bad injury. Back in those days, it equated to a cast for a couple months, some minimal PT and back at life. Around 1984 I reinjured the same ankle during training in H2H combat while on active duty Navy. I was spinning around on my left foot, it caught on a protrusion on the ground and the foot stopped turning while the rest of my body kept going. The result was the foot being dislocated and spun around until the fibula fractured and obviously some tendons and ligaments were ill treated in the process. As typical for military injuries in the era, 3 months of a cast, no PT and orders to get ready for the physical fitness test coming up were the prescription. For about 9 years. I was okay. Around 1993 I stared having problems with the ankle locking up and having pain. Still being on active duty, I went to medical and was told I had arthritis and bone spurs (osteophytes) growing in the joint. In 1995 I had surgery to remove the bone spurs and clean out the joint. In 2000 I was again having problems and had a repeat of the same type of surgery. This one lasted for approximately 9 years, at which time I was again having issues, only worse than before. By this time I was retired from the Navy and sought care through a civilian who repeated the previous procedures and also opened other areas to remove scar tissue from tendons and ligaments. Three years later, I was in again. This time cleaning up the joint and removing bone spurs not just in the ankle, but other joints as well. Two years later, more of the same. with a mention that the next time would probably entail an ankle replacement. Three and a half years ago, I sought out the care of a very well respected ankle/foot guy and was informed that he "could replace the ankle", but I wouldn't be very happy with him if he did because I now have so many other issues I would still be in pain. So he again cleaned the ankle and removed bone spurs from it and other joints, cleaned up more scar tissue from ligaments and tendons, fused the subtalar joint, and performed a Strayer procedure to ease the tension on the Achilles tendon. My foot and ankle were cut open 5 different places (plus the scope incisions in some places). I now am on my 2nd type of custom brace and am almost constantly in pain. I can't even mow my lawn anymore, because it results in me spending the next day icing and elevating my foot. I can't do things with my grandkids, because I can't stand the pain to do so. I can't take NSAIDs for pain due to cardiac stents and use only prescription strength NSAID Cream locally with Tylenol orally and yet I am still in too much pain to lead anywhere near an active life, which lead to being overweight. At my son's wedding I danced one dance with my wife and paid the price the rest of the night and the next day. At my last appointment I was told I now probably need a fusion of the transverse tarsal joint, more cleaning of other joints and possibly either an ankle replacement or fusion. Was also told that the ankle will need either of those at another time if it's not done now. The conversation ended with being told that I can look forward to a lifetime of periodic surgeries, as no one will ever fix the issues permanently.

 Not long ago my son ( a soldier) asked me if I had considered amputation, to enable me to live an active, pain free life again. He told me that with the advances in Prosthesis, people have a much better quality of life and he even knows a soldier that is still on active duty, jumping out of planes and being deployed without one leg. I kind of blew off the idea until I was getting fitted for my new brace and the orthotic specialist mentioned it again. He said he had several patients that had made the choice and not one that regretted it.

 As to be predicted, when I mention it at home my wife gives me the stink eye and poops all over the idea. My daughter quotes statistics about average longevity of amputees and some friends think I'm crazy. I haven't yet broached the subject with my surgeon, but am thinking about doing so at my next appointment in a month. This is no easy decision. I know I don't have to tell anyone here that.

 I am open to inputs and considerations to take in this process. Those of you that have made such a decision (or chose other) please provide input about where you were , where you are now and how you now feel about your choice.

 Thank you in advance.

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Hi Keith,

i chose to have RBK amp about 10 years. I went through many operation—far less than you! I was tired of the pain and mainly how it had impacted my life—I was very active before my accident—a woman hit my car because she was distracted. When I made the decision I knew I wanted to go back to my life. It took me about a year of rehab and I got discouraged, but I did get back to what I wanted to do in a different way for example I lead trips to Viet Nam for  small groups—have done 6 since my amputation. Only you can decided. You did not say where you live, but you might want to check  out the Amputation Coalition in the US. I live in Canada and am an active participant feeling very  welcome. They have a very wonderful annual conference that provides a lots of education.

Blessings, 

Beth Marie 

 

 

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Thank you for the reply, BethMarie. I live in Newport News, Va., US. I have an appointment with my surgeon in a month. I might try a different type of brace for one last effort, but I know it is only temporary and both my surgeon and the PAs at the practice have told me repeatedly that as things sit there is not going to be a final fixes everything operation. They say I can look forward to multiple more surgeries over the years. Which is why I'm thinking about amputation as an option. Every time I have an operation, I go through another two weeks of elevation, six weeks of non weight bearing and months of PT. Then there's the added time it takes past therapy before it truly reaches the optimal level of use. I keep thinking, wouldn't it be better to just get it cut off and (hopefully) be done with it? Not to mention, they can't possibly fix every joint in my foot that is going bad or going to go bad, so no matter what they do, I will have fain of some sort in the foot and ankle for the rest of my life. I want to spend the day with my grandchildren at the amusement park without having to just find someplace to sit and watch them go to rides and run around without me, because I can't take the pain of walking behind them or can't keep up. I want to be able to go to the store with my wife without having to either find an electric cart to drive or cut shopping short because the hard floors hurt too much to take for long. I even want to be able to walk for exercise and maybe be able to go jogging again, so it's not so hard to be able to get my weight down.

 Sorry for going on so much. I just get frustrated and don't want to make my wife listen to it. I know she doesn't understand, even though she tries to be supportive of what I go through.

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On ‎7‎/‎11‎/‎2019 at 1:28 AM, BethMarie said:

Hi Keith,

i chose to have RBK amp about 10 years. I went through many operation—far less than you! I was tired of the pain and mainly how it had impacted my life—I was very active before my accident—a woman hit my car because she was distracted. When I made the decision I knew I wanted to go back to my life. It took me about a year of rehab and I got discouraged, but I did get back to what I wanted to do in a different way for example I lead trips to Viet Nam for  small groups—have done 6 since my amputation. Only you can decided. You did not say where you live, but you might want to check  out the Amputation Coalition in the US. I live in Canada and am an active participant feeling very  welcome. They have a very wonderful annual conference that provides a lots of education.

Blessings, 

Beth Marie 

 

 

Beth Marie,

I must admit I am a little disappointed by the lack of response here, from people other than you. Thank you for your input. I guess I will check out the coalition site and see if the members there are any more responsive.

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Hi Keith,
I realize how difficult a place you are in, but to me in many ways it sounds you have made your decision, but you are fearful life won't be better--or at least that is where I found myself in the midst of deciding--a very scary place. As I said before only you can make the decision, but I am glad to listen as you work through this.

I am dealing with complications from a hip replacement in my "good" leg with a pinched nerve. I am back in the wheelchair and that is upsetting. My amputation leg is now my good leg--and I am grateful it is pain free so I can deal with the pain.

I am in NC right now visiting relatives and will leave on  Wednesday to go to San Antonio to attend the Amputee Coalitions annual meeting. I have made many friends in that group and the program for this year sounds great.I

You are in my thoughts and prayers. Peace!

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BethMarie,

I guess you're right. I pretty much have made my decision, but am keeping an open mind until next week, when I have my next appointment with my surgeon. I contacted the orthotics office that fit me for the brace I'm currently using. The technician had told me he had other patients that had made the decision to amputate and he would be glad to get me in touch with some of them before I make up my mind. One gentleman called me and talked about his experience, which was a big help. I'm sure I'll have some more conversations and questions for him.

If I do decide to amputate, I think the next part will possibly be the most difficult. My wife. She doesn't seem to understand the level of pain I have each day. She keeps trying to talk me into using gimmick cures, like taking spice capsules and smearing magnesium ointment on it. This morning she made the comment, "oh well, getting old is painful. Going to have to get used to it". I don't think she will agree with or understand my decision, and I don't want it to become an issue between us. I have actually tried to think of ways to help her understand how it feels. I thought I could tie a cord very tightly around her ankle until it starts to hurt, tape a small leggo to the top of her foot and a few to the bottom and have her put on her shoes to try walking like that. Maybe if she understood that that's the best analogy I can come up with to describe how it feels for me every day. Of course, I wouldn't do any of that, but can be very frustrated when she just doesn't seem to understand. Not to mention, I'm sure she wouldn't volunteer for it either. She'd probably think I finally lost my mind. :)

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