Amputees Support Group

Amputation is the removal of a body extremity by trauma or surgery. Many have undergone amputation or have been living with a missing limb since birth. In either case, life as an amputee can be challenging. This is the place to find others going through the same experiences as an amputee. Share your thoughts, troubles, and solutions with the community.

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Kris1983 07/10/2018

Afternoon all, looking for an experienced perspective regarding an elective BKA. Bit of background:

I destroyed my ankle back in 2006 (broken tib/fib, tore everything in my ankle and split the tib/fib syndesmosis. I had reconstructive surgery immediately after and it seemed ok, but since then I've had multiple re-injuries and am up to 7 surgeries currently. Surgeries have included multiple ligament recontructions, scope, allograft ligament, removal of the allograft/anchors after the anchors pulled out and most recently (9months ago) a the complete removal of a nerve that was swollen/scared and caught in the joint.

The majority of my surgeries were done by different Drs around the country (Army), with each Dr. thinking they had the magical solution to get me back to normal. I was finally forced out of the Army due to the continued deterioration of the joint leading me to be completely unable to run, walk for any extended time/distance, and unable to carry any more than my body weight. The VA sent me to a specialist who did the nerve removal, and who I have an additional follow-up with soon and I wanted anyone's opinion on whether I am completley out of my mind or not broaching the subjuct of removing the offending limb. I have no illusons that it is a guaranteed or perfect fix, but my reasons for wanting to are as follows:

- The only remaining "fixes" involve either a fusion or replacement, or reshaping my foot to accomidate my greatly changed foot strike. I'm only 34, and have 2 girls who would greatly like to be able to do things without dad being in constant pain.

- As I currently have a hard time doing anything more than walking from the parking lot to my desk, I feel that there is a greater likleyhood of my having an increased level of functionality when it's all said and done.

- Multiple physical therapists have told me I would be better off and more functional with a prosthetic as opposed to keeping the ankle.

-As I am only 34, I feel have a higher liklihood of recovering from an amputation now, rather than continuing to do patch fixes on my ankle that never last more than 6 months and being forced down this path when I'm older.

- I'm in constant pain. NSAIDs don't touch it, and I'm in a job field that highly frowns on continual use of any narcotic pain relievers.

- The constant pain has made me a grumpy prick, even on top of my normal anti-social tendencies.

Again, any opinions (even "you're an idiot") are welcome.

Thanks

Wonderfulbill 07/11/2018

First- I don't think you are an idiot. Second- I have no answers for you. All I can do is wish you the best of luck with what you decide. Endeavor to Persevere.

Awinn 07/13/2018

Hey Kris,

Sorry to hear what you're going through. It definitely sounds like you've thought this through. Im Allen a 51yo rbka amputee, resulting from a bone infection in my heel that just progressed too far over the course of a year. Im just over a year with my amputation and about a year with my prosthesis.

I think you've given this some careful thought. The only thing I might add... maybe get another opinion to see if there is anything possible that can give you a relatively pain free useful foot...you may have already been through this but just wanted to emphasize it. If you can talk to a prosthetist about life as an amputee and what he thinks your prognosis would be.

Life as an amputee..for me is fairly close to a normal life, pre infection. I do everything I did before all this, a physical job, coaching and a bit of hiking. There are some bumps here and there and there are a few changes (like showering sitting down). There is also the possibility of phantom pain which for some can be pretty bad...but like you mentioned you are in constant pain now.

So yeah..talk to the docs...and ask what is the longterm prognosis if you dont do the amputation...and what is it if you do? One thing to look into ...where would they have to amputate given the damage to your leg below the knee or above/thru the knee...it may not be a deal breaker but it is a bit different.

sammartino1 07/14/2018

Just keep in mind that there are a lot of underlying problems that no one tells you about after amputation of a leg, 75% of all amputees development wounds on their stump and this prevents you from wearing your prosthetic. Thus, you are left wheelchair bound or using arm braces to get around. This didn’t happen to me until I got my definitive (final prosthetic leg), the fit was not good and it first bruised my leg below the knee. This took me off work since November 2017 to present as it happened several times. I’m now waiting to see a specialist who may recommend a socket less socket or some other other modified prosthetic leg. Whatever you decide, I wish you the very best in your persuit to better health. Have a lengthy dialogue with your doctor(s) and try a get all the facts before you make this life changing event. Godspeed.

Stephdon 07/18/2018

I had my right leg amputated above the knee two years ago. I have not found that getting around on a prosthetic easy at all, but many folks that I have met with below the knee prosthetic devices are more active than I am because they still have their knee. I was in constant pain for the two years prior (2014-2016) with multiple revision surgeries after receiving limb salvage surgery for a tumor in my tibia/knee. I am happier now without the pain, and I do not miss my leg that much, but I am frustrated with the time it is taking to get comfortable with my fake leg. I am 58 years old and am able to work full time (I had a desk job prior to all this and was able to go back to work pretty quickly after the amputation). It takes constant strength conditioning to get going on a prosthetic but it sure beats being in pain. All the best to you.

Kris1983 07/18/2018

All,

Thank you for taking the time to reply, and for the additional information. We'll see what the VA has to say and go from there. I ripped it up again last weekend, so I might have to let that heal again before they decide on the way forward, but we'll see. If they were to do it, it would be a below the knee, would would hopefully allow me a better likelihood for a return to activity vs an above the knee.

Thanks again

RadioHead 07/18/2018

This is a difficult decision you face, and no easy answers. Outcomes depend on many interdependent variables, none completely under anyone's control - how healthy you are now, how active you have been before the foot and ankle got bad, how motivated you are to get back to better health and activity, how your body heals, your surgeon's technique, the skills of your prosthetist, and how well she/he is matched to your needs, and perhaps, how lucky you are. I'd be happy to talk with you if you'd like. I wrestled with this decision, did a lot of research on my own.
I'd be happy to talk with you further if you would like. You don't say where you are located, but I can help you find a local peer support group if one exists, and will share the questions I asked and how I found answers to them.

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