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Behind the scenes of a prosthetic fitting

A lot goes into getting a set of legs made.

 
Most of you will never know what it is like to have to go through this process,  but some of you have been through it multiple times! I am now working on perhaps my 7th set of prosthetic sockets in only three short years,  and I feel for my friends at Kentucky Prosthetics every time I have to come in.

 
As a bilateral amputee I have to go through the process twice,  once for each leg.  The average amputee is a single below knee amputee, but I am what I jokingly refer to as a “two for one special. ” Everything done for me has to be done twice.

When it comes to prosthetics the interface is the most important thing. You can have the latest and coolest electronic leg out there,  but if you don’t have a good fitting socket all you really have is a high priced paperweight.

On my most recent visit to Kentucky Prosthetics I asked Matt if I could follow him around in the shop and get a few pictures and video of the process, so the average person can see what kind of patience and craftsmanship must go into making a great set of sockets. Of course he said yes….  He learned a long time ago I don’t accept no for an answer!

Casting the limb is the very first part of the process,  and arguably the most important.  If the cast does not capture the perfect picture of the limb,  than the socket ill not fit properly.  Every different type of socket has it’s own casting technique as well.  Here I have been cast and then put under vacuum to get a proper “picture” of my leg.

Vacuum assisted casting
Vacuum assisted casting
image
ready for cast material

Once the castings have been completed they will be set up and prepared for pouring of a plaster material that will eventually become the basis of my limb castings. (shown above)

 

Each casting has to be poured and then set with a piece of hardware that will allow the casts to be set in a vice and and sculpted when they are set and dry.

So far all of this seems pretty old school, right? Why not take some high tech scanner and scan my leg into a computer and have a C&C machine make the cast? Well, Kentucky Prosthetics has the equipment to do that, but you must remember that every limb and every socket is different! If I had been cast with the 3D scanner, I would never properly fit into the sockets being made for me. High tech is great, but sometimes old-school is the only way to go to get a perfect fit!

Here is what the casting look likes when set:

Once the cast has been set and shaved a bit, it then goes through the process of being “pulled” into a plastic check socket:

After the socket has been pulled, my prosthetist goes through the lengthy process of pulling, trimming, and forming the plastic socket to a perfect fit.

Once all of this has been completed, he has to turn around and do the entire thing over again for my other leg! And this is almost the easy part… Once the sockets are done they have to be properly aligned, fixed, and then put on my Harmony P3 system and feet so the whole thing can be aligned to my walking.

This entire process started on a Thursday afternoon and finished early on a Saturday afternoon. That’s nearly two working days to get my fit just the way I want it. Perfection takes time, and old-school craftsmanship isn’t done in a few hours.

I am now waking around in the test sockets, just to see how they feel. Once we agree that the fit is what I want, those test sockets will be turned into a permanent set of very cool sockets that I shouldn’t have to change for a long time!

Thanks to my friends at Kentucky Prosthetics for all the hard work you put into keeping me walking!

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And people wonder why they feel like crap all the time!

I don’t talk about it much anymore, but I am a Behcet’s disease survivor. It is something I live with every day besides the loss of my limbs.

Tonight I was creeping around on some BD social network sites and I saw things that just made me ill thinking about what my fellow BD’ers are going through, and what they are putting themselves through.

BD is an auto-immune disorder, and it is one of the worst. It does things to your body that are hard to describe, and there is no one cure-all medication for what we have…
But there is a fix…

And no one seems to be using it! I read about these problems the BD patients were having, and then I go look at their personal pages and I see diet sodas and overly processed food in their photo albums, or I read about what they had for dinner or where they ate out at… Things we all talk about on places like facebook.

I can’t say this enough, if you have an auto-immune disorder and you are drinking soda pop and eating junk food, your symptoms will never go away! What you fuel your body with is what fuels your immune system, and if you put in too much junk, well junk is what you get back.

diet sodas are the worst, and any “sugar free” food.. 99% of the sugar free drinks, food, and snacks are sweetened with aspartame, and that is a huge trigger for me and my BD.

I love diet soda, but I don’t drink it. I switched from soda to tea, and got a sweetener that was “made with” stevia. I was still having problems with BD, getting mouth ulcers and pains in my guts.. So I looked up the high priced sweetener I was using for my tea, and sure enough it had a bit of stevia and a WHOLE lot of aspartame.

I can’t stress this enough, read and re-read your labels! It is better to drink a drink or eat a snack with plain old sugar than to eat a no-sugar or diet variety. Same goes for the “no fat” and “low fat” processed foods. If it is low fat, they had to use something else to make it taste good, and that is probably aspartame or sugar anyway. It is a lose-lose situation.

I finally found an all natural drink mix that I put in my water that uses ONLY the oils from citrus and 100% PURE STEVIA, no apspartame, and I have not had a mouth ulcer or intestinal problem since I made the switch, and that was several months ago.

I also decided to cut out margarine and other chemically processed additives, switching to real butter, real animal fat, and real vegetable fats whenever possible, and it has made a big difference in how I feel and how my body acts. I eat real beef, real bacon, and I am not ashamed of it. I avoid any label marked “Zero calories,” “Zero fat,” and “fat free.” Making those choices for my eating habits sounds like I should be making my cholesterol go through the roof, or raise my blood pressure, but it has not.

Making those changes has actually made me feel better, lose a bit of weight, and build muscle strength.

As a species we have survived for thousands of years eating red meat, the fat from that meat, simple grains, and foraged fruits and vegetables. That is what our bodies are meant to be fueled by, I ask anyone who begs to differ to explain why we have omnivore teeth? We are not herbivores, we are not meat-only predators, we are a combination of the two, and the way we eat directly affects how we feel and our bodies act.

It makes me so upset to see other BD sufferers immediatly tell another to “go to the doctor and ask for XXXXX medication” or “I am on YYY, XXXXX, and ZZZZZZ medications and I am almost under control with my symptom flares.” that is our answer now- meds, meds, and more meds.

I have had enough of seeing this sort of thing. If you want to be healthy — even with a debilitating auto-immune disease — start eating right! Start eating better! Stop eating junk that was created in a lab and processed as waste from a factory!

I can’t even chew gum anymore because I can’t find any that doesn’t have aspartame in it.

Read your labels people, and eat better to feel better. Get out of the “eat healthy” rut, because that is just a marketing catch phrase. Be informed about what you eat so you can eat better and stay healthy.

PS: I still eat junk I’m not supposed to, but I just don’t do it all the time, and I make sure I eat preservative free as often as possible.. So yea, I still eat potato chips, eat candy bars, and drink coffee. I just eat better stuff more often.

And never-ever eat aspartame products.

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Control Freak

Being an amputee has it’s challenges. Being a control freak and being an amputee can be much worse. I like to write about the good and the bad, but I try to navigate my words toward the good side of the scale more often. I have written about my time in the hospital, but not overly so.

Something has come to light for me recently that has made me take a hard look at myself, and my psyche. Like I said, I am a control freak. I always have been… I like things done my way, and I like things done on my terms. This part of me made me really great and also really bad at some of the things in my life. Put me in the hospital, though, and you take all of my control away.

I never realized just how horribly this has affected me until I recently had a panic attack while with a friend. It was such a horrible outburst by me that I nearly ended a friendship with someone I respect and think very highly of. But how did my time in the hospital bring this on?

I spent three months in a hospital, lying on my back. I wasn’t allowed to go to the bathroom. I wasn’t allowed to get out of bed. Hell, I couldn’t get out of bed. If I wanted to take care of bodily functions I had to push a button and ask someone if I could…. Then I had to wait for them to come help me do it. The control freak had lost all control of everything that was happening to him.

I experienced a mini-coma after one of my surgeries, and before I was even really awake someone at the hospital tried to get me to drink some water. It went down the wrong way… Heck, I wasn’t even awake yet and had no idea where I was at. I choked on it. This left me with nearly three weeks of drinking coffee the consistency of honey, and getting all my water by sucking it out of a sponge on a stick. Really, if I was thirsty, I had to suck it out of a sponge.

I didn’t even have control over my own hydration.

Actually, the only real decision I had while I served my time in the hospital was when my legs would going to come off. My options were have more tests that were going to tell me my feet were dead and live with more agonizing pain, or go ahead and get it over with. Some choice, eh?

I once had to argue with a nurse about being allowed to have a bowel movement in a hospital bathroom without her standing over me watching. I. Kid. You. Not. I had to be ugly enough with her to make her cry before she would step outside the bathroom. As I look back now, that little outburst was probably a very small panic attack.

For many amputees the hospital stay is not nearly so long and protracted as mine was. That does not make me tougher –or better — but it does make me different.

Before I was a bad passenger in vehicles other people were driving…. Now I am a complete asshole who freaks out when others do even slightly unsafe things…

Before I was a guy who hated having to take my shoes off for airport security…. Now I get so torn up inside abut being made to stand to one side — and have a stranger put their hands on me and search me — that I can’t think straight…

Before I hated not being in control….. Now, my mind literally can not handle when control is taken from me.

I just aced two psychology classes in past semesters at college and it has still taken me until now to realize that I am exhibiting classic signs of agoraphobia and panic disorder. I hope that realizing this is an issue for me will help me recognize when it is happening and keep me from making an ass of myself or hurting the feelings of others in the future.

Why am I blogging about this? Because if it has happened to me, then it will happen to someone else…. And perhaps reading this will help another amputee who had all their control taken away from them… and perhaps they can get help if they need it..

And perhaps I am blogging about this to tell my friends and family that I know I am over the top sometimes, but I will try to be better about it in the future. And maybe this is also an apology to a friend who didn’t deserve to see me freak out on them……

Hello. My name is Neil, and I am a recovering control freak.

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Having a blast at the ACA Conference!

So I am walking my butt off, meeting lots of people, and having a generally awesome time!

Lots of Facebook friends are now real friends, and I have met so many inspirational people!

When I have a moment to sit down with my iPad (I’m on my iPhone one thumb tapping right now!) I will give you some of the low down and web links to the great people I am interacting with!

Good stuff, good stuff!

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The Prosthetic Lottery

I haven’t posted in a while, life has been hectic… Tonight I had to make time to post, as I have a few things on my mind that I really feel need to be addressed.

 

We have soldiers from the military coming home as Wounded Warriors.. Some are amputees, some have PTSD, but they all have been changed due to the ravages of war. We recently had a bombing at the Boston Marathon that left several dead, hundreds injured, and many of those injured became new amputees.

 

Now, according to all the regular ol’ amputees out there in this country, it is unfair that these highly publicized wounded warriors and bombing victims are getting brand new state of the art equipment and prosthetics. Amputees over on the ACA facebook page are — for lack of a better word — whining because they can’t have what these new amputees are getting. (thread is here)

 

Personally, I feel this is deplorable behavior from my fellow amputees. How must our veterans (or bombing victims) feel if they were to read one of these threads? To go online to find support from people who have been there only to find that they are being ridiculed and complained about because they have something “better?” How would you feel?

 

Pretty damned horrible, I would imagine.

 

The problem I am finding after reading so many of these venomous posts is that everyone likes to complain and throw stones, but no one wants to advocate for themselves! How do you expect to get ANYTHING if you wont push for it? No one is going to hand you the best of the best just because you sit there and look pitiful… fight for what you want.. Or shut your whiny-ass mouth.

 

How dare anyone begrudge another human being having their life made better?

 

Would you begrudge your neighbor if they won the lottery? Would you tell them that they don’t deserve it? Would you cry because it is unfair that you didn’t get a winning lottery ticket as well? Yea, I thought not.

 

The bottom line here is that you must advocate for yourself, because the chances of the media picking up your story is very low. You can sit at home and be mad that a soldier who stepped on an IED and had both legs blown off got brand new microprocessor knees… Or you can start talking to your prosthetist… you congressman… Your senator… Hell, the ACA and other groups will help you get better equipment if you would just get off your hind end and fill out the proper forms and make the right phone calls…

 

Stop waiting to win the Prosthetic Lottery… And stop crying every time someone else does win it. In the end, we are all amputees… and right now your whiny-ass has made me ashamed to be associated with you.

 

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New feet for me.. Perspective for you!

I recently posted this to the Amputee Coalition of America’s facebook page. I want to share this with you all, and then afterwards expand upon it..

Just had to share my excitement! 6 months ago I bought a gently used right side College Park Tru-Step foot on eBay. since then I have found lots and lots of other right sides, but no left side, at least in my price range. so several months ago I was a guinea pig at an OT/PT CEU hours conference. I met a person who is themselves a single BK amputee, and knows how to get feet. I told them what I had, and what I still needed. I pretty much said “gimme a free foot” and they pretty much said “pfft yea right.. I can’t do that.”

Real nice about it, but up front about a no go. So, I continued to search for the left side.. No joy.

Sienna Newman, one of the great people on my prosthetics team, told me to hold out and wait, not buy a left side yet.. and guess what? A few weeks ago, a box was dropped off at KY Prosthetics in Louisville, KY, just chock full ‘o a left side foot, and various parts for my right side I already had!

We have been waiting for my liners to come in, so I can get liners and new feet on all in one shot.. and I go Monday for that. I have been through two sets of liners in six months.. I wear them out!

Why, you might ask, did my prosthetics company just not work a new set out through my insurance? It’s because I don’t have any. My insurance coverage ran out one year and two months ago.

Since then, my prosthetics company has made me 4 sets of sockets, (8 total) with another set coming in July. They are paying for and going to a class to make a new kind of socket for me simply because I want it. Everything I need takes double, as I am a DBK. If I need it, I still get it, regardless of my ability to pay right now. 10 total sockets, and all the supplies I need, without a single question.

I like my CP Velocity feet I have now, but the Tru-Steps are just awesome.

But not nearly as awesome as the person who helped me get the foot, and my prosthetics team from Kentucky Prosthetics and Orthotics in Louisville, KY.

I get asked often why I travel three hours for my prosthetics. This is why.
Can’t wait for Monday!

Pretty groovy, right? Free foot, and still getting support from my prosthetics company for more than a year without insurance.

But, that doesn’t really tell you much, so, let me put it into perspective.

The new foot? the trustep? Let me show it to you…

Now, here is the type of feet I have now.. Also College Park, and great feet.. The Velocity..

See the difference? Again, perspective..

Look at the velocity… I have some friends (best friends, actually) that have a street legal drag race car. It’s a Dodge Demon,, and it is totally badass. totally! (I’m looking at you, Jenny and Bob!) It can be driven on the street, but it is more at home on the straight track. It is built for speed on the flat track. Hopped up motor, beefed up undercarriage, and all the trimmings for go-fast down the track.

More perspective, the “cheetah legs” you see some amputees running in, those are like top fuel dragsters, they are made for one thing.. Going REALLY FAST… those are not regular daily wear feet.. Just like a rail dragster is not meant for daily use on the road.

Now, the trustep? Just scroll back up and look at it. Independent front suspension. Articulating ankle.. This is like a brand new Dodge Ram 4X4 with a turbo diesel. It is meant for on road and off. Hills and valleys. Those tough spots. You can go fast in it, but you can just as easily lock it in 4 low and dive off into the mud hole.

That is what the trustep is.

My walking should improve immensely over tough terrain. Because my current feet are made for high return on flat surfaces. to put it into perspective for all of you, here is my comparison of what things feel like now as opposed to when I still had my legs:
Flat surfaces=flat surfaces
flat grass= walking in river rock- slightly unstable
clumpy grass and/or a gravel driveway= big rip-rap rock
Everyday inclines=super steep slopes

that’s what it feels like. I have no ankle control. It is what it is. But, with the trustep, this should be different.. At least a bit better, and potentially a lot better.

Now, look at the two feet themselves. See the connection parts? Look how much taller the velocity is the trustep. I am set as short as I can be on the Velocity, and I am still two inches taller than I once was. I will lose those two inches with the trustep. That means lower center of gravity, better balance, easier sitting and standing, and easier climbing steps.

I will lose a little height, but I will be gaining so much more.

Now, moving on to other perspectives.

Now, I could potentially BUY A NEW CAR with what this foot costs. Could you imagine your local car salesman at a big dealership handing you the keys to a brand new car and say “Here ya go.. Take off.. No charge!”

Nope, not gonna happen. Not without a reality show and lots of media coverage. And you still paying the taxes on it 😉

Now, to take the analogy a step further. Keep in mind, I have not had insurance since around April of 2011. That’s a year and two months ago!

Imagine buying a car from a dealership that only sells custom made cars. Perspective: for the cost of my legs, I could have bought a new Porsch.

So you get your new custom car from the dealership, and the warranty runs out. the dealership not only gives you brand new tires every six months, but also a full new custom made frame and suspension every time you need it. and they build it by hand!

I am a bilateral below knee amputee. that means I need two of EVERYTHING. I have had about four sets of sockets made for me since my insurance ran out. that’s 8 sockets, people. the process is not simple. it goes like this:
1. Individual molds of my distal ends have to be taken.(office visit one)
2. Exact replicas of my distal ends have to be cast from these molds.
3. Plastic test sockets have to be made from the castings of my legs.
4. I have to be test fit from the test sockets. (office visit two)
5. Corrections have to be made to the test sockets by heating and custom molding to perfection.
6. New plaster castings of the sockets have to be made from the test sockets.
7. Carbon fiber sockets have to be made from the new castings. they have to add all the mounting hardware, make it perfect, or I can’t walk in them.
8. Install, final adjust and tuning. (office visit three)
That is what it takes to get me a new set of sockets. and they have to make TWO OF EVERYTHING.

Under those sockets I have to wear liners. they are supposed to last six months. I have been through TWO SETS of liners in about six months, but I am really active. these things are not free, but when I need them, I get them.

More perspective for you. I want a new design of socket. They are a new concept for BK amputees, and by all accounts, are totally awesome. an evolution in sockets. Google RCR sockets to see them. My prosthetics company has not been through the training to make them. But when I decided I wanted them, they decided to apply for, pay for, and take the educational courses to make them for me.

The classes are in July, and so my sockets will be made shortly after that.

that’s like your custom auto dealership sending their mechanics to a course to make NEW FRAMES and SUSPENSION for your custom out of warranty car. And not charging you. Making the new frame and suspension, and installing it, and just handing it over.

I would not be where I am today without the support of KY Prosthetics and Orthotics. they have stood behind me every step of the way. Insurance or not.

To the person who helped me find a foot…I am simply overwhelmed that you believed in me enough to do this for me.

And Matt, Sienna, Tommy, Mike, and all the rest at KY Prosthetics that have helped me, stood behind me, pushed me, and put up with my stubborn self.. I can’t properly put into words my gratitude for your efforts. It is humbling and overwhelming all at once. Thank you.

I get asked why I travel three hours for my prosthetics care… This is why. All of the determination in the world would not have gotten me out of a wheelchair and walking if not for the efforts of my Prosthetics Team.

I am very lucky, and I wont ever forget why.

And I can’t wait ’till Monday!

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Decisions, decisions… Help me choose!

Well, my old leg sleeves are getting pretty ratty, and I am needing a new pair! So, I thought you all my help me out..

Here are the covers I have been wearing for almost a year:

I know, kinda groovy.. Very cool.. But getting old for me.. so, here are some new styles I am looking at:

 

So we have flames, red static, krome, plain black, or a custom design like the Marines one above, except with a fire/rescue logo or something..

 

what do you think?

[polldaddy poll=6308616]

 

 

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School’s out! Bring on the Summer!

My semester is officially over.. and I walked out with a GPA of 3.3.. In layman’s terms that is a B+, or 88%. Not bad, but i think I could have done better..

what shall I do now that I’m off from school for the summer? well, work on stuff for my college PTA program, of course! I have a lot to do to get my application to the PTA program done, so I will be busy!

What else? well I am thinking I might catch up on some camping and fishing with my son, get some squirrel hunting in, and maybe go for a ride on my new bike!

Yep, that’s right, my new bike. A buddy of mine traded me motorcycles, as I can’t get my feet on the pegs of the old ones. I know what your thinking.. good for him! He got himself a trike!

NOPE! This TwoFeetShorter dude is riding up on TWO WHEELS! I have already had several people nay-say me.. Tell me I am making a mistake.. I just don’t understand why.. I am not an invalid, handicapped, or disabled.. I admit, I am challenged.. But I have always enjoyed a challenge. If I can’t ride on two wheels dragging my knees into a curve.. what’s the point?

If I had to ride a trike on the road, I might as well give up the ghost and start riding quads off road… and I don’t much care for riding quads :/

So, nay-say all you want.. I am riding.. ON MY TERMS. And on this new bike! Yea, yea.. It’s a scooter.. But a highway scooter.. Part of the joy for me of owning a bike is working on it, modding it, and making it all my own.. so I have already begun that process.

I may take risks, but I am still playing it safe. this bike will have some custom mods to help me ride.. a new seat that will help me plant my feet better.. Brake mods to keep the rear brake on my good hand, and kickstand extensions to make it easier to park it and reach the stand with my prosthetic legs.

 

Oh, and I have a few other things in the works, as well.. Power plant mods for go-fast.. Paint in the future (yea, looking at you, Bob, my old friend;) And maybe some new pipes…

Wait.. I already got those! and installed them myself..

I think this almost qualifies as a check-off on my socket List!

Living life.. Enjoying summer.. what are you doing this summer?

Let’s go ride!

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Gone mobile!

I am trying out some new things for my blog, namely mobile apps!

so, if you want to help me out and test these bad boys, please grab the:
Windows Mobile Version
Android Version

And for iOS, go here on your iPhone or iPad then follow the pop up instructions for installing on your desktop.

Please, try these out and tell me if they seem to act OK!

Before I go and spend money on getting them on all the app stores, I need to know they work!

Thanks!

Neil

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Great weekend!

So I had a good weekend in Louisville! Got to see some new faces and old friends.. Hopefully helped out some OTA/PTAs with their perception of people with amputations, and with how they will give therapy in the future.

Went to eat at Buca’s with an old friend, then discovered my hotel had a bar.. Good times!

I got hit several times over the weekend with comments about my blog, and how I don’t post nearly as often as I used to. I was also told that still many new amputees within the circle of care I had are directed here.. And that I now have a responsibility to maintain this blog a little better..

I will do my best… My first things first.. I am going to reorganize all my videos onto one group of pages.. I have never been a big picture person, so I am going to concentrate on the videos more, I think..

I have lots of thoughts about being a person with amputations, and I need to get more of those thoughts written down, so they might help others..

This weekend has motivated me to get rolling a bit better on doing what I set out to do with this blog, to help others!

I got to meet some local “celebrities” this weekend as well. Kevin Trees, an above knee amputee who is a Sergeant for Louisville Metro Police Department. I got to meet Joe Riffe, the Prosthetic Medic, and I got to see him Walking on his new leg with the help of crutches. (links to his blog and his paypal donation site are on the left side bar, go check this guy out!)

I also got to meet a young lady who is a soccer player. She lost a leg below the knee only 4 weeks ago, and is already walking unaided!

Bravo girl, bravo! So proud for you. Keep it up! And remember what I told you.. No one (except mom and dad, lol) is allowed to tell you what you can and can’t do! No one is allowed to set limitations for you, and you are not handicapped!

Don’t be afraid to tell anyone off that tells you you can’t do anything you want to do, because you can! I know you can. I have seen you walk…

Next soccer season, if you and your mom invite me, I would love to come see you play in your first soccer game of the next season. I’ll be glad cheer you on, and knock down anyone who says you can’t.

You inspired me this weekend, kiddo.. you did good!