making a life changing choice

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I'm considering something that will change the rest of my life, and I just need to talk about it.

Background information:
I have peripheral neuropathy (nerve damage) in both of my legs affecting my feet. My left foot has good plantarflexion (can push down) but no other movement and little skin sensation but can still feel pain. Other than that, it's healthy and I can walk fine on it when wearing a brace.

My right foot, however, is:
-totally paralyzed
- has no sensation at all (except for pain in my ankle joint)
- missing small toe (infection that got bad enough it needed to be amputated because I can't feel my toes)
- the toe next to the empty toe space may be infected too now (getting that checked out tomorrow)
- major arthritis in my ankle
- jolts of severe random nerve pain every few hours
- slowly increasing pain in my ankle after a couple hours on my feet.
- torn ligaments due to repeated sprains

My options:
The only thing that can really be treated is the arthritis. My first two choices are ankle fusion or a total joint replacement. I don't find these choices very appealing because I'd still have the paralysis, nerve pain and chronic injuries (because I can't feel when I hurt my foot).

I'm considering another, rather extreme option. I'm considering a transtibial (below knee) amputation. This will negate of ALL of the problems I have with that foot with the possible exception of the nerve pan.

I know a fair amount more about what it's like to be an amputee than most people, since my best friend happens to be a below knee amputee. She is also an occupational therapist and agrees that an amputation would be the best thing for me.

I'd be able to be more active again. I'd be able to go hiking, bike riding and running with a prosthetic leg. Things that have been very hard \ painful for the past 5 years.

I have absolutely no problems with the idea of being an amputee. I actually find prosthetics VERY interesting.

I'm going talk to an orthopedic surgeon soon about having an elective amputation. I'm hoping to have it done late June or early July.

It may sound weird, but I'm kinda excited about this!

Being able to be pain free and active? Who wouldn't want that? If that's the best option for you, then good luck.

The thing that I'm really worried about is that when it comes time to present my argument for an elective amputation to an orthopedic surgeon, I won't be able to get everything across that I want to say. I'm NOWHERE near as good at expressing my thoughts to someone face to face as I am through writing.

I'm also really worried that they may say that my argument just isn't enough to warrant something as extreme an amputation.
I've thought about this for many many months and have decided that this IS what I want to do.

The only thing between me and surgery is my ability to express my thoughts clearly and concisely to a stranger I've never talked to before.

What if you write your reasons down, and take it with you? You could refer to it as needed, or just hand it over if necessary.

I hope it goes well for you.

I don't completely understand what you're dealing with, but I do have nerve pain and arthritis myself and have worked with many amputees over the years. Based upon what I know about chronic pain and what I know about prosthetics, I think you're making a good decision. I hope everything goes well for you! Keep us posted.

The idea of the loss or removal of any part of a limb is distressing to me, even if it's damaged. But that doesn't mean I'd try to persuade someone not to make the best decision for themselves or can't see the sense in it. I've never dealt with anything like this before.

I also appreciate a good outside-the-box solution, and I have to give you huge recognition for your bravery and eagerness to find a way back to a life where more physical activity is possible. This sounds very positive.

Best of luck sir, I'll support you too. You can always just print out this thread to show your doctor, might provide some additional context for your thinking.

Thanks everyone.

I plan on making a bit of a blog thread for this subject. I just got another set of Xrays of my foot and ankle today and I also got a referral to an orthopedic surgeon. I'm gonna call tomorrow and set up an appointment. Hopefully It'll be set for early next week.

It might be a good idea to start of with a list of pros and cons.

At the least go into the meeting with a list of the main points that you want to discuss.

Don't forget to include your friends opinion and relevant experience.

Best regards and good luck.

I don't know much about this but this is something to consider just incase you haven't heard about it. The medication Neurontin & the more potent version of it called Lyrica can hep with neuropathy pain. I'm taking Neurontin for OCD & I have few side-effects. I'd be scared of surgery like that but the ability to be pain free & active is a huge benefit. I like the idea of writing down what you want to say & wish you the best of luck with all this.

I was on Lyrica when I first started having problems with my feet. It did help with some of the nerve pain, but the side effects I experienced weren't worth it to me.

Amputation literally takes care of ALL of the things (by removing the things ) that are limiting my activity. I'll most likely still have a little nerve pain (most of the damaged nerves are below the amputation level).

Here's one of my xrays of my ankle. I wrote in the notations to show what's going on in there.

Double post

So I had my first appointment with my orthopedic surgeon. I ended up not making a list of things I wanted to say and I'm regretting not doing that! I didn't really get out anything I wanted to talk about. I just kept nodding and going along with what he was saying. I'm really mad at myself for NOT REALLY TALKING to him. I didn't say anything about what I wanted to do or what my goals were.

I have an appointment for an MRI next week and a followup appointment with my doctor a week later. My friend is gonna go with me next time so hopefully it'll go better.