Way O/T: any member, or members, on PM with a below the knee prosthetic?

Anybody who has actually met me knows where this is going.................

I went out by myself for a few hours Sunday and rode my dirt-bike for a little soul searching. And all but made up my mind. I am thinking of taking the plunge.
For those who don't know, I have been dealing with a severely messed up right leg for over 15 years. The older I get, the harder it gets to deal with.
The pain is sometimes borderline un-bearable. And, it is getting harder to function normally with it. It used to be about an inch shorter than the other.
Then a little over 1.5". I went to an ortho yesterday. He measured it up. It is now a full 2.25" shorter than the other.
The wife and I were comparing pictures the other day. The disfigurement is also worsening. X-rays today confirmed.
Today was the first time in a very long time I have seen anybody about it. For years I was very good at ignoring it. That is not so easy any more.
The wife and I have been on a fitness journey for a few years now. It has impeded my progress there as well.
It is affecting my work. Social life. Attitude. Mental well being. HEALTH. Life in general.
And, I really miss riding! It is really affecting my riding. It can take prolly 85% of the blame for my recent scuffle with a cactus.
And, my prowess on the bike is a mere shadow what it used to be. Both because, I hardly ride. And, when I do, I struggle with that damn leg!
I don't ever want to be as fast as I once was. But, I would like to be able to stay over the bike in a deep single-track rut. (I pretty much just fall over).
Or blast a wash without constantly feeling like I am going to crash (mostly because I prolly am! LOL).
Honestly though, riding is actually pretty far down the list of worries I have about this. I am sure I will adapt to that just fine.
It is day to day life when the leg is not on! Getting up in the middle of the night to use the bathroom. Stuff like that.
And, it is: I am afraid of how nasty all that stuff on my stump would be every day. I sweat a lot. That has to get nasty, all those thick layers, esp. in the summer time in AZ.
Phantom pains scare the crap out of me! As does infection. And, anything else that could go wrong.
I am a big guy. 6'1" 300+ lbs. Even in my prime, when I was in excellent physical shape, I was 280lbs.
I don't ever see me getting under 250. We'll see? But, IDK?
Is the stump going to be able to bear that kind of weight without more pain than I have now? That is probably my biggest question!
There are reasons to do it anyways even if the pain will still be great. My lower back, right hip, and left knee are starting to bug me a little. All I am sure from compensating for my bad right leg.
This is probably the main reason to do it! Save my back, hip, knee!
And, the biggest thing of all that freaks me out! You can't go back! There is no turning back once you commit.
This messes with my head and causes me great anxiety! This is the reason I have been soo good at ignoring this for 15 years.
I'm mostly just thinking out-loud here, maybe even venting? after yesterday's pretty emotional visit to the ortho. I'm doing it here because of the kindred spirit I guess.

In life, and especially work, I am very very good at making changes when things are not working.
A good way to word my though process on most things would be: never define insanity (we all know the definition of insanity).
Until, it comes to my leg. I just keep going. Yea, it is good to be tough (stubborn may be more appropriate).
But, I am ruining myself. In more ways than one.

But anyways, if there is anybody here with a lower-leg prosthetic? It would be awesome to hear about the realities of life after the cut.

Are there any teaching hospitals or good technical universities out your way? A lot of prosthetics work is being done in academia, and you might find a researcher who's doing work that needs test subjects. This can lead to lower cost care, but more importantly a chance to learn what the state of the art is. That would include socket materials and attachment methods, integration advancements, ways of dealing with pressure sores, etc.

I've done a decent amount of medical-related work during my time with the two big Cambridge MA research uni's, but not any prosthetics, so I can't give more than generalities. But those in the field would be helpful for you to speak with, even if they can't offer much more than dialog.

might try some veterans group
large population dealing with lower leg prosthetic.

need a larger population to get a good answer

The guy I saw yesterday is a very good orthopedic. He actually takes care of the Arizona Cardinals. Pretty sure he is good, LOL. And, I really liked him.
He is sending me to another ortho for a second opinion next week. And, he is also sending me to a prosthetist. He said this guy is probably the best here in the valley.
At the cutting edge of prosthetic technology. And, he also wears a prosthetic. So, I am sure that is going to be an interesting visit!

Good luck with the visits. And remember, at worst you can always get a peg-leg, and have the best Pirate costume each October 31st.

just curious why one leg is shorter (and getting shorter??) i have one leg shorter from a femur break but not that bad.

comments:
in my early days of dirt bike racing there was a guy with a peg leg that rode reasonably well until he crashed on whatever side wouldn't allow him to get up.

my boy got burnt 70%. 1 year in icu, 1/2 year in hospital. in a coma spread eagle for over 2 months did nerve damage and now has virtually no use of hands. he wanted to get both arms chopped off and get prosthetic arms that worked off of brain signals. did extensive testing and first went to the slip on version which didn't work out for him. he's glad now he didn't take the plunge. yours however is only from below the knee which, i don't think, operates like that? don't know current prothetics.

worked with a guy at the car dealership long ago. a big man. could put a th350 in the car without a transmission jack. had a peg leg. just limped a little.

oh, and i understand the cactus thing. i crashed in a cactus bed once. what a deal

B, ping me privately and I will put you in touch with some people, as well as one that literally just did this after some decade of dealing with something similar.

If there's any positive to the wat on terror, it's got to be how far prosthetics have advanced. They're pretty damn good these days, from what i understand. Good luck dude!

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Best of luck wheelie... as a fellow dirtbike rider I can't help but cringe of the thought.

I don't know a damn thing about prosthetics,but I'm pulling for you on this one wheelie!

I keep an on eye on the B&A thread,seems as of late some healthy dirt biking is just what you needed.

Sorry to hear about that leg with that brand new bike and all.

I don't have any advice but I hope whatever you decide to do works out.


Who knows...maybe an introduction to prosthetics may spark idea idea for a new product to keep those machines busy!

A guy at my high school had a prosthetic from the knee down. He actually played on the basketball team, got a few minutes a game. He had it from a pretty young age if I remember correctly, so he grew up with it to some extent.

A buddy of mine is doing research out in Washington on prosthetics. He has a PhD and an MD (what an overachiever!) and his research is based around figuring out what brain signals are linked to tactile feedback and how we could replicate them. So even now with how far prosthetic technology has come, we are still quite a long way away from actual closed-loop control.

My son was born missing the portion of his leg from about mid shin down. He's two and half now, 30ish pounds, and learned to walk on a prosthetic. With pants on, running on the playground, you would have no idea. That is unless he does something weird and the prosthetic rotates so his foot is facing the wrong way, then he gets concerned looks from unknowing parents. He will run, jump and swim with all the other kids, no problem. He was born this way and it is the only thing he knows.

Being a bit older and bigger there are legitimate challenges, like learning to walk again... I don't have direct advice for your situation. The little guy's prosthetic can get a bit stinky and he has some skin soreness sometimes. I can only imagine the stink issues when he is a teenager, big grown guy, you already know what it will be like. I think you get used to it though.

Without knowing much about your issue, I would make sure you've have really addressed all other options. What have you done for PT and are there any other surgical options that might work. Even if this means paying a trainer to show up at your shop following a lessor procedure.

Understand your insurance situation. Our insurance requires a 20% copay for durable medical equipment, while many require 30%. $15K surgery on an ankle, $300 copay...don't have an ankle, $15K prosthetic $3K copay...go figure. An adult below the knee prosthetic will run from $10K for very basic to for a $65K for a powered ankle.

You will only work with your surgeon briefly. You are going to live with your prosthesis. We have found "the best" can be attributed friendly relationships with physicians more so than good patient results. We found we had better luck with some of the lower level staff than the guy in charge. We are still looking for someone we really like. Make sure they understand what you need to get on a dirtbike and what you need to do your job. Develop a plan with them, might take more than one leg. Don't count on bio integrated prosthetic. As far as the field has come, it is still pretty basic.

The prosthesis should be able to set you up to meet with a few patients who have been through a similar situation as you. They should have some of the best information.

Daft question but is there no option about simply replacing the missing bone? I know with crash victims, they can spread the 2 broken ends pretty far apart with plates then let things regrow. Even transplanting some rib bone into the gap and a blood supply. Have you kinda exhausted all the available viable repair attempt options to this?

In tech collage some of the people on my course were in the orthopedics at the local hospital, weight is a seriously bad complicating factor with it, its not so much fantom pain, its the simple fact of the full body weight pushing on the end of only a couple of bones - not spread out over a foot. Ulcers become a problem. I would not overly sweat the surgical side of things, removing lower limbs is a pretty std procedure has been for a while.

According to them + a friend with a false leg, (i let him use my machinery to modfy things when he needs) peg legs were not to bad but harder to balance on. Problem is everyone wants a conventional looking foot and with out a working ankle the way it puts forces through your leg stresses other joints, causing early onset arthritis if you are already getting hip and other issues + over weight honestly from my non experience point of view i don't see it being the mirical you hope for. I kinda think your pretty likely to be trading one set of problems to another set of issues. As to getting up in the night, you just slip it on and off as you go. no real different to slippers. The better sockets can be perforated too, so its nothing like having your stump in a plastic cup all day, think more akin to the bad notion of wearing a socks with sanddles.

The friend gets a lot of shit from the local hospital when he goes in with modifications to what the "experts" supplied him, but little tweaks can make a real difference. Equally how many people get to say to there boss they were late for work because they had to weld there friends foot back on (he cracked his alu angle joint jumping off a wall)

I feel for you i have fucked up my left and right knee and have a bike i can no longer ride, my problem is my knees just give out, and the leg bends sideways and theres F all i can do about it. This kinda pulls the knee cap around to the inside of the knee and im in agony for weeks. My case its some genetic condition and theres kinda sweet fa they can do and don't rate it bad enough for any other option "yet".

My father-in-law was supposed to get fitted after he lost his leg just above the knee to diabetes. He never did, I think because of his age/health it just wasn't in the cards. I remember him telling me how the compression 'sock' he had to wear to form the stump was very very painful.

I think with your age and weight (not knocking you, I am overweight and mid 40's myself), it would seem risky to me, but I also understand living with pain so I get why you are looking at this.


Can you get a custom orthotic for your shoe (or a whole shoe I guess) that would help you? I just had surgery for gall bladder removal (I know not even remotely the same) and it is scary going under hoping things turn out well, I can't imagine having to consider a limb removal.

All the best to you! Hope you get some relief one way or another.

newtonsapple said:

My son was born missing the portion of his leg from about mid shin down. He's two and half now, 30ish pounds, and learned to walk on a prosthetic. With pants on, running on the playground, you would have no idea. That is unless he does something weird and the prosthetic rotates so his foot is facing the wrong way, then he gets concerned looks from unknowing parents. He will run, jump and swim with all the other kids, no problem. He was born this way and it is the only thing he knows.

Being a bit older and bigger there are legitimate challenges, like learning to walk again... I don't have direct advice for your situation. The little guy's prosthetic can get a bit stinky and he has some skin soreness sometimes. I can only imagine the stink issues when he is a teenager, big grown guy, you already know what it will be like. I think you get used to it though.

Without knowing much about your issue, I would make sure you've have really addressed all other options. What have you done for PT and are there any other surgical options that might work. Even if this means paying a trainer to show up at your shop following a lessor procedure.

Understand your insurance situation. Our insurance requires a 20% copay for durable medical equipment, while many require 30%. $15K surgery on an ankle, $300 copay...don't have an ankle, $15K prosthetic $3K copay...go figure. An adult below the knee prosthetic will run from $10K for very basic to for a $65K for a powered ankle.

You will only work with your surgeon briefly. You are going to live with your prosthesis. We have found "the best" can be attributed friendly relationships with physicians more so than good patient results. We found we had better luck with some of the lower level staff than the guy in charge. We are still looking for someone we really like. Make sure they understand what you need to get on a dirtbike and what you need to do your job. Develop a plan with them, might take more than one leg. Don't count on bio integrated prosthetic. As far as the field has come, it is still pretty basic.

The prosthesis should be able to set you up to meet with a few patients who have been through a similar situation as you. They should have some of the best information.

Click to expand...

Your boy's story is amazing! Very inspirational. There are times when I wish I would have woken up from surgery with the bottom of my leg gone.
I was passed out from shock before the helicopter landed on the hospital. This sure would have been easier when I was in my prime!

adama said:

Daft question but is there no option about simply replacing the missing bone? I know with crash victims, they can spread the 2 broken ends pretty far apart with plates then let things regrow. Even transplanting some rib bone into the gap and a blood supply. Have you kinda exhausted all the available viable repair attempt options to this?

In tech collage some of the people on my course were in the orthopedics at the local hospital, weight is a seriously bad complicating factor with it, its not so much fantom pain, its the simple fact of the full body weight pushing on the end of only a couple of bones - not spread out over a foot. Ulcers become a problem. I would not overly sweat the surgical side of things, removing lower limbs is a pretty std procedure has been for a while.

According to them + a friend with a false leg, (i let him use my machinery to modfy things when he needs) peg legs were not to bad but harder to balance on. Problem is everyone wants a conventional looking foot and with out a working ankle the way it puts forces through your leg stresses other joints, causing early onset arthritis if you are already getting hip and other issues + over weight honestly from my non experience point of view i don't see it being the mirical you hope for. I kinda think your pretty likely to be trading one set of problems to another set of issues. As to getting up in the night, you just slip it on and off as you go. no real different to slippers. The better sockets can be perforated too, so its nothing like having your stump in a plastic cup all day, think more akin to the bad notion of wearing a socks with sanddles.

The friend gets a lot of shit from the local hospital when he goes in with modifications to what the "experts" supplied him, but little tweaks can make a real difference. Equally how many people get to say to there boss they were late for work because they had to weld there friends foot back on (he cracked his alu angle joint jumping off a wall)

I feel for you i have fucked up my left and right knee and have a bike i can no longer ride, my problem is my knees just give out, and the leg bends sideways and theres F all i can do about it. This kinda pulls the knee cap around to the inside of the knee and im in agony for weeks. My case its some genetic condition and theres kinda sweet fa they can do and don't rate it bad enough for any other option "yet".

Click to expand...

Yea, there are options. But, every single one of them is non-weight bearing for at least a year. One option would take about three years, before I would start therapy to rebuild my leg from atrophy. And, it comes with huge vascular risks that could cause me to loose it anyways! Can you imagine the depression a guy would spiral in to after that waste of time?!

I totally agree with you that I could very well be trading one problem for another just as bad, or potentially worse! problem. This is why I am on a mission to talk to people.

One thing is for sure, I will not do this until I have dropped a significant amount more weight. One of my next appointments is with a trainer.
I am fully aware, if I do this, I will have to adopt an entirely different lifestyle. So, I am going to try that now for a couple months, and see if I can do it.
I don't see me getting under 250. Allison has another opinion! LOL, she is a bad-ass! All over this health stuff.
I was 6'2" 280 at the time of the accident when I was 33. And, had been 280 since my early twenties. That was just what I weighed.
I ate what I wanted. Drank what I wanted, a-lot. And, rode my dirt-bike, A-LOT. And, I always weighed 280, LOL
Here is a picture of me and two buddies taken the week before the accident:



I am obviously the big guy on the right, LOL. My buddy Dana in the center gets full credit for saving my life. Were it not for him, I would have bled out.
Anyways, the highest I have ever been was 384 in 2016. Then I got down to 302 mid last year. Right now I am about 325.
Allison has cranked the screws down tight on our diets (again), and I am all in. About to go on a mission and see if she is right. She thinks I can get under 250.
Main reason I am in: for all I know, maybe I will be able to deal with this easier, if I weigh less? Maybe my leg will quit shrinking if I weigh less?

It is not an easy decision. And, so far, all the professionals feel amputation is best. I am almost convinced. But, scared shit-less!
And, I don't scare easy.

As much as some aspects of 3D printing make me nervous (hey, I'm a subtractive kinda guy), the potential for medical repair and replacement parts is staggering. It won't be tomorrow, but someday there will be options for replacement organs, and yes, limbs. I'm sure the DOD has money going into this area of research, and frankly I'd like to see much more emphasis on this in the military budget.

Mike1974 said:

My father-in-law was supposed to get fitted after he lost his leg just above the knee to diabetes. He never did, I think because of his age/health it just wasn't in the cards. I remember him telling me how the compression 'sock' he had to wear to form the stump was very very painful.

I think with your age and weight (not knocking you, I am overweight and mid 40's myself), it would seem risky to me, but I also understand living with pain so I get why you are looking at this.


Can you get a custom orthotic for your shoe (or a whole shoe I guess) that would help you? I just had surgery for gall bladder removal (I know not even remotely the same) and it is scary going under hoping things turn out well, I can't imagine having to consider a limb removal.

All the best to you! Hope you get some relief one way or another.

Click to expand...

That is another thing Allison is working on. Finding somebody who can do something for/to a shoe to help compensate for the short leg.
She is having a real hard time finding somebody. No appointments yet, but she is on it.
The big problem is: the disfigurement of my leg/ankle severely limit what I can wear. Low-cut sneakers, or sandals, are about the only things I can get on.
I am sure it would help my left knee, right hip, and lower back!

Its pretty funny what I have to do to a motocross boot to actually get it to work just okay. And, I can only wear it for a couple hours.
I don't show this too often. But, this is my right leg:





You can see why lopping it off is being seriously considered! Yes, it feels like it looks. Hurts like hell!
And here is what I have to do to a boot to get that abortion in one:







Very uncomfortable. Very difficult/painful to get on/off. But, when you wanna ride, you do what it takes.

So, speaking of orthotics. I believe it would help a lot. Because: I raised the right footpeg on my bike 10mm, and it helped a lot.
I only went 10mm because it was easy. And, I was curious. I keep trying to think of a way to go higher. But, short of frame mods, I got no easy solution yet.
I don't really notice it until a hard, technical, or fast section, where you have to stay in the attack position for a long time.
I can stay there a lot longer with the peg raised before my core gets tired.
So, yea, I think that is a good idea. And, may help with Allison's plans to get me with a trainer.

Milland said:

As much as some aspects of 3D printing make me nervous (hey, I'm a subtractive kinda guy), the potential for medical repair and replacement parts is staggering. It won't be tomorrow, but someday there will be options for replacement organs, and yes, limbs. I'm sure the DOD has money going into this area of research, and frankly I'd like to see much more emphasis on this in the military budget.

Click to expand...

I read something recently about synthetic kidneys! Very cool!