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Heather Mills - Amputee Forum
Kait

Please help: fusion or elective BKA decision

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Hi I'm new here. I'm 20 years old and I'm in college. I was born with a congenital condition but I didn't know until I was a senior in high school. I was a really competitive long distance runner and it's actually how I found out. I landed on a stick wrong on a 10 miler and it damaged what's known as a tarsal coalition. It's pretty rare. I've only talked to one person who has it in the last 3 years. It's basically where bones in the foot didn't separate in the womb all the way. I had 3 TCs and 3 resection surgeries. Now I have advanced degeneration in a neighboring joint in my right foot ( they don't know why) and long list of bone problems associated with it. I have chronic pain that makes it almost impossible to walk some days. I'm only able to do the bare minimum to get what i need done. I also have nerve problems in my foot that started after my third surgery. I can barely move my toes and have decreased movement in the rest of my foot and it's twitchy😂. I'm getting a nerve test soon for that. I've actually gone all the way to Mayo Clinic. The only option they are giving me is a hindfoot fusion and my parents made me schedule surgery for the summer. I've done extensive research on fusion and I feel like I'm signing my future away. I'm so young that there is no way i won't come won't need further surgeries and have arthritis through out my body. And that's without taking into consideration the limitations a fusion gives you even if it took most pain away. I don't think I will ever be happy with a fusion. I've been researching and reading about amputations for a year now and I really think amputation is the best option. I feel like it could give me my life back that a fusion could never do. I'm more scared of having extensive limitations than any sort of limb loss. I've tried talking to my family and people I'm close to about amputation but I've gotten a lot of backlash. Everytime I try to tell my doctors what I want to do but I chicken out because I don't even really know why. I guess would you fuse or amputate? How do you even convince people amputation is the right thing to do? Any advice is appreciated 

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Hi, Kait, and welcome to the Forum!  I have had "something like" some of your situation, although I amputated before anyone mentioned fusion as an option.  My own problems started when I was born with what was considered a very, very minor defect in the alignment of my feet...it was never considered worth treating until my mid-forties, at which time tendons started snapping, bones started breaking, and feet started getting surgically rebuilt.  The right foot ultimately came out OK (after only 10 surgical procedures), but the left one kept breaking down, becoming more painful, stiff, and fragile after each of four different attempts at a surgical repair.  Eventually, I developed a post-op infection and, yada, yada, yada, I opted for amputation in hopes of getting my life back.

Soooo....I sort of understand where you're coming from.  I'll give you the "upside" of the amputation first:  it gave me pretty much my "normal" life back and I've never regretted it.  The "downside?"  It took a long time to get that normal life back, and the earliest of my prosthetics did actually have the same effect as a fused ankle.  But prosthetic legs have come a long way in the 13 years since my amputation, and you're a lot younger than I was, so your own recovery could turn out to be easier than mine. 

If I were you, I'd do as much research as you can on both fusion and amputation.  And that will mean speaking openly with your doctors about what you fear and what you hope for under each scenario.  You might also want to make contact with a prosthetist and get their opinion of possible solutions for your situation.  You say that your condition is very rare, but if you happen to be in contact with that one other person, it could be invaluable to compare notes...often folks dealing with a situation will know much more about what might or might not work than a person with training but no experience with the condition.  At any rate, do all you can to gather information that's truly applicable to YOU, not just theory about your options.

I'm not sure how much involvement your family and friends should have during your research and investigations...again, they do not know how all the aspects of your situation and how your condition feels to you.  It is good if you can have the support of family and friends, but when most people hear talk about losing a limb, their first response is panic and the second is resistance.  You might want to have enough information to be pretty solid with your decision before asking for their support.  (That's based on my own experience, but you know your family best.)

I'm sorry you're in the position to have to think about this decision.  It's not an easy one...once you lose a limb, it's permanent.  But once you lose a painful and useless limb, you can also get on with figuring out what to do with your life.  A determined amputee can have a very nice life one-legged.  So good luck with your research and I hope you can reach a decision that truly feels right to you!

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Hi Kait,

Welcome to the forum. Although I am much older I struggled with elective amputation about 10 years ago--I too wanted my life back. I got much of the same backlash from some friends and my doctor. He was a good doctor and I really liked him, but I had had 4 surgeries for my ankle--from car crash--and I was fed up with watching life go by. Like you I did lots of research and felt amputation was the best chance for me. This the clue you need to decide what is best for YOU. I told my doctor if he could not do it, sadly I would need to find someone else wh would. about six months later when he saw how well I was doing, he said , "weshould have done this a year ago." You are an adult and you need to decide what is best for YOU. For most people I found they reacted with horror and discouraged me--my doctor felt like he needed to remind me it was permanent--duh!

I just found Cheryl's response to you and what she said so well is my experience too--amputation gave me back my life! So, as you research a good place to explore is the Amputee Coalition in the US--the provide lots of great info. I do not know where you live, but the Coalition puts on a yearly conference that is great, informative and lots of young people attend.

I wish you all the best in this difficult decision making process.

Peace

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Hi Kait 

Welcome.

i am an above knee amputee but like the others above was an elective one.  My issues started when I had a head on meeting with a lorry.  After 2 years and a lot of surgeries and pain relief later I made the decision I would fight for amputation.  My leg didn't work and was extremely painful.  My battle took 2 years and it was only after op number 46 it was finally agreed to. My battle wasn't' just with the doctors but also like you, with my family, don't get me wrong they were extremely supportive but still didn't want me to have it done.  Even on the day of surgery my mum tried telling me it was ok if I didn't want to go through with it.  If I could give some advice, you just have to make them see that you haven't rushed into it and have been thorough with your research.   My mum was always of the opinion that whilst I had my leg they may come up with something that would make it work.  At the end of the day it is you that has to live with the pain etc so it has to be your decision.  It is tough  broaching the subject with doctors but you have to be strong.

At the point of amputation they also discussed fusion but that would not remove the pain.  For me amputation was/and has been the best option.  As Cheryl said above there are ups and downs.  I have been lucky with regards to protetists etc.  My main issue has been trouble with sockets fitting but there are improvements being made all the time with regards to laser fittings etc.  

I was 32 when I had my amputation and for me it gave me my life back.  It is not something to take lightly but you appear to have researched it and wayed up the pros and cons of both.  

I wish you all the best for whatever you decide.

Vicki

x

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