Pending BKA

[critesk]

Good evening,

I'm currently about a week away from (hopefully) the final provider who will perform my elective amputation and have been referred (outside the VA thankfully) to an individual who specializes in RPNI due to extensive nerve damage.

Background: I destroyed my ankle almost 16 years ago, and have had 8 surgeries attempting to fix the issues. Continued time playing Army repeatedly led to reduced functionality, to the point where I was medically discharged. Unfortunately it has continued to get worse, and my providers agree that it is time to stop attempting to salvage the limb as I will most likely have much greater functionality with less pain after an amputation.

If you were beginning your amputation journey again, which questions in particular do you wish you would have asked your provider? I currently work a desk job so workplace accommodations are a non-issue, although I would like to get back as soon as possible.

Additionally, does anyone who has had RPNI done (either at the time or later down the road) have any regrets?

Thanks

Kris

[stonecutter]

Hi Kris. Welcome to the forums. I appreciate you joining up here to share your experience and ask your questions.

I didn't know what an RPNI was until I just googled it a few moments ago, so I'm confident that I can't give you any tips in that regard. When I had my amputation in 1994, the way they explained what would happen with the nerve was that the surgeon would identify and isolate the main nerve that runs down the leg, and as the amputation was happening, they would stretch the nerve (apparently a reference to an elastic was made), and they would cut it when stretched. The theory was that the nerve would retract up into my remaining stump and be surrounded by an abundance of tissue. The RPNI looks like they carefully manage what happens with the nerve end, which I think that for me, would have had a more positive result, as I had a stump that had little to no sensation at the bottom, with the exception of a spot on my incision scar that, when touched would cause a myriad of sensation from sharp pain to burning to itch for every surface of my phantom foot.

This situation had to be managed, because if the socket of a prosthetic was putting any pressure on that little spot - about half the size of a dime, it would be excruciating to walk. (I had other issues which prompted me to have a revision surgery in 2012 and the surgeon who did that did some work to alleviate the problem).

I think the result of my rambling is to let you know that in my opinion, consciously making an effort to manage what happens with the nerve end would likely be a tremendous improvement than if they didn't.

Questions I would have asked before...

I'm not sure I had any, to be honest. For me, it feels like they let me think I had a choice in whether or not I lost my leg (5 surgeries to try to save it in a 3 week span) before my actual amputation, but honestly, the gravity of the situation may have meant I'd have died of sepsis well before they were able to make a big save. But I did have time for lots of discussion prior to signing on the line for the amputation. I met with an amputee, she brought in a prosthesis for me to touch, hold, poke around. I remember thinking during that visit that this was really happening...

The questions I had to ask - honestly - I don't remember specifics, but I remember her telling me to ask her absolutely anything - there's no stupid questions and nothing embarrassing that she hadn't heard before or personally went through before. Being 19 at the time I'm sure I had some questions, but honestly - it's been 27 years and I can't remember them.

But - I think if I had to ask questions now, I'd like to understand what the initial recovery is like post amputation. There's a lot of phantom sensation and pain as your brain tries to come to terms with the fact that a body part isn't reporting in anymore... That subsides as you recover. There are methods to deal with it while you're going through it. Another question that I get asked now is - "How long does it take to feel 'normal' again?" To me - this is a state of mind. I've lived more of my life as an amputee than with two legs. It feels normal to me know and I don't dwell on it anymore (I did for the first few months). I think it took a good two years for me to think that being an amputee was 'normal'.

In the end, I think the biggest adjustment is one that you need to suffer through, but not have to make yourself. Your family and friends will likely treat you a lot different for a while as they come to terms with it. Some friends couldn't deal with the fact I was missing a leg and others weren't phased. My parents went through a lot when I was injured. They saw, heard and smelled a lot of nasty when I was laid up. I think they are okay with it now though because I went on to have (more-or-less) the life I would have had otherwise. Career, family, friends, etc... Still do much of the same things I did before I was hurt. So they see normalcy there, and it helps normalize it for them.

I think for the most part, everyone experiences things differently and there's no book on the topic. But these forums will be here to help you through it, and I've been known to through out my phone number to people who need to have a quicker chat than the once-a-day visit I make to these forums.

So - I guess - keep asking your questions. All of the regulars here are happy to chime in and help.

Good luck to you - and keep us posted.

OH... and thank you for your service!