My New Leg

I went to the prosthetics shop for my appointment last Wednesday and found this accidental history lesson leaning against the wall. The prosthesis on the right is a below-knee peg leg from the 19th century or earlier. The user would have bent his knee and rested it on the platform. The lower strap would have gone around the user’s lower thigh and knee, and the upper strap was a belt around the waist to stabilize the leg to the user’s body. The prosthesis in the middle is a post-World War Two model for an above-knee amputee. The socket is aluminum with a fiber liner inside and an articulated, wood foot. The prosthesis on the left is a contemporary below-knee suction socket with a cosmetic covering.

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In an earlier post, I discussed the problem of my leg clicking. Although I’ve more or less solved the problem of my socket being a bit tight, I haven’t made any headway with the clicking — which is now beginning to drive me a little batty.

We’re used to receiving sensory feedback when we walk, but it’s mostly physical and phenomenological. We feel our legs swing through the air, our feet rollover, our arms swing at our sides, our trunks gently sway side to side and roll up and down. We feel ourselves walk. But I don’t usually hear myself walk, and I find it really distracting.

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In an earlier post, I described two problems. One was that my stump shrinks during the day and swells back up at night, so the leg is a bit tight in the morning. It seems that the best way to deal with this is to wear a stump shrinker at night. A stump shrinker is essentially a tube of elastic fabric. You pull it halfway onto your stump, twist it, and double it back to pull the other half onto your stump.

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Although I’ve been devoted a bit of writing to how my prosthesis was made, what it feels like, and how it works, I haven’t really explained how I actually put the thing on each morning. So here’s a tutorial on how to put on a leg…

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Wayne sent my new liners so I wouldn’t have to come pick them up, and they arrived in the mail today. Here’s what one looks like out of the box. While sockets are custom fit and fabricated, most other prosthetics components are manufactured products like any other.

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Kim, my partner, says the socket looks edgy because it almost appears as if my stump were tattooed and the foot is attached directly to me. I’m almost embarrassed to say I’m spending way too much time walking around looking down at my leg and being pleased with myself. Hey, I may as well have fun with this. How many people get to recreate parts of their body every few years and custom design the skin while they’re at it?

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So far, so good. I’ve been wearing the new leg since picking it up this afternoon and just sent Wayne the following email:

Wayne,

Holy crap, you really outdid yourself on my leg. It’s the most beautiful prosthesis I’ve ever seen. And the fit appears to be perfect: I’ve been walking on it since I picked it up this afternoon and it feels great. Thank you so much!

Thanks again,
Steve Kurzman

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I picked up the final prosthesis today and was blown away by how great it looks. The lamination turned out beautifully! Here’s a few quick photos — more later…
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I have yet to see Michael Moore’s movie, “Sicko”, but I’ve read that it does a fair job of pointing out how our health care system is broken. Amen to that. While getting a new prosthesis, courtesy of my old insurance company, I have been applying for new health insurance. Sometimes we focus on the technology and forget that the access to this technology is very regulated and expensive.

I’ve received a couple letters from my prospective insurance company which I feel are worth relating here as an illustration of some of the hoops that people with disabilities have to jump through in order to get health care — and particularly insurance that will pay for prostheses and other necessary assistive technology.

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I decided to go with the Japanese-style dragon fabric. Audrey — the two year-old hider of fabric — and I went back to Mendel’s, bought another half yard, and dropped it off at the prosthetics shop. I hope this turns out well. Wayne said the final leg should be ready for me to pick up in a couple days.

On June 30th, I received the following brief email:

Steve have you decided on a foot yet? Wayne

Oops, time to make up my mind.

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After griping about the test socket being too tight, I’ve had a chance to focus on what the feet feel like. Here are some brief thoughts…

While I like the smooth rollover of the Trias, I like it more around the house than outside. First, the keel is a bit short, so the foot feels shorter than what I am accustomed to with the Renegade. Inside, this doesn’t much matter since we don’t wear shoes in my house and I tend to take shorter steps on the slippery hardwood floors. But outside, where I take longer strides, it feels like I’m falling off the Trias.

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Well, now I’ve had a chance to try trotting around on the test socket and the feet, mostly just putting it on in the afternoon and wearing it around the house or while walking around the neighborhood.

Not much to say yet, except I’ve run into the first problem: ouch, the socket is too tight. Way too tight. The problem is that I had asked Wayne to make the socket more tightly fitting than on my current prosthesis, which is getting pretty loose. And he did…

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Sadly enough, I haven’t had much of a chance to try out the test socket yet. I’ve been busy and it takes so much mental energy and focus to think about what a leg feels like, that it’s fallen by the wayside during the past week. It’s difficult to just wear it un-selfconsciously; I feel compelled to concentrate on how the foot feels, how my gait appears, and so on, which turns into a full-time endeavor.

But today I gave a presentation at my older daughter’s preschool on my new leg, which was a lot of fun. Occasionally, a parent comes into the school to talk about something of interest just before “circle time”. It gives the kid a chance to stand at the front of the preschool class with their mom or dad (usually, a mom, I suspect) and help present something neat to their friends.

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Now it was time to go back to the shop, try the test socket and find out what feet Wayne ordered for me to try out. In an earlier posting, I included an email I sent to Wayne listing the feet I would like to try: the Vari-Flex from Ossur (previously Flex-Foot), the Endolite Elite, and the Ohio Willow Wood Pathfinder.

Even after all these years, I still find it a bit strange to think of feet as having brand names and models. It’s simultaneously intriguing and alienating to think of a part of one’s body as a consumer product…

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Once again, Wayne was kind enough to take photos of the process of making the test socket in between my appointments, to which I’ve added a brief description. I should point that this is an ususual step in the process of getting a prosthesis. Many prosthetists simply make a check socket, work with their patients to make their adjustments with that (as I described in my last post) and then build the final prosthesis. In this case, Wayne is really going the extra mile so I can use a test socket to try out a variety of feet before I select one for a final prosthesis.

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Now that Wayne had made a check socket for me, it was time to go back to the shop and do the fitting.

The check socket fitting is one of the most important points in getting a new prosthesis and is kind of fun. As I mentioned in my first post, the socket is the most crucial part of a prosthesis because it is the interface between the amputee’s body and the foot. Prosthetic feet are sexy and get a lot of media coverage, but the socket is where the rubber meets the road. I’ve walked on all sorts of feet from around the world and, while I find some preferable to others, pretty much anything will allow you to walk from point A to point B. The same cannot be said for sockets, though. If they don’t fit well or hurt, the simple act of walking is unpleasant and discouraging.

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At the end of my May 8 posting about getting cast for the socket of my new leg, I mentioned Wayne would be using the cast to create a check socket. A check socket is pretty much what it sounds like: a prototype of a socket used to evaluate and adjust the fit prior to making the final socket for a finished prosthesis. Check sockets are made from a transparent thermoplastic (usually polyethylene), meaning a plastic that changes shape when heated and becomes hard when cooled.

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As Wayne suggested, I spent a couple days surfing the web and thinking about what feet I would like to try. One big challenge for me is that my stump is pretty long, and many of the newer energy storing feet are too tall for me to wear. Some feet come in regular and “low profile” (short) heights, but it’s still a limiting factor and rules out some exciting feet. Here’s a copy of the email I sent him (with added photos from the web URLs listed):

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After the casting, we zipped over to the hospital for my appointment with Dr. David Sayah to get a prescription for the prosthesis for which I had just been cast. Like I said earlier, I’m going about this a little backwards…

I’m a new patient at this clinic, so I had to sit in the waiting room and fill out out a ream of paperwork and questionnaires on my current state of health. By the time I finished, I didn’t know whether to be relieved that I don’t have tuberculosis, Crohn’s disease, rectal bleeding, and so on, or terrified that these are possibilities worth asking about.

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Well, the second step of getting a prosthesis is actually called “casting,” but it usually does involve a lot of plaster. Dara (my friend and photographer for this project) and I arrived at the prosthetics shop a few minutes early and waited in the front office.

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I was so happy to have a physician’s appointment, I called up my prosthetics shop right away and spoke with Julie, the head administrative assistant. When I told her about how I’d been waiting for a while to get some time with a physician to get a prescription, she mentioned a weekly free prosthetics clinic at UCSF where I could have gotten a prescription without having to wait weeks for an appointment. I had been waiting to call her to schedule a casting until after I had an appointment, but, boy, do I feel stupid for not having called her and learned about this clinic earlier.

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My physicians’ office called me on my cell phone while I was working at an internet cafe and told me they had a cancellation. Am I available tomorrow afternoon? Hell yeah I’m available, I now have three weeks before my health insurance runs out to get this thing authorized and have the insurance pay for my new leg.

Yay!

I called my physician’s office again, for the third week in a row, to try to schedule an appointment. I tried explaining it would be a brief visit; all they need to do is diagnose my amputation and prescribe a prosthesis. The man on the phone has no idea what I’m talking about and tries to book me with Vascular Medicine, who passes me back. I got cranky and tried to point out that health insurance doesn’t actually do much good if I can’t even see a doctor. I’m paying hundreds of dollars a month for this? I hate to think what would happen if I were actually ill…

I called my physician’s office again to see if they have any openings in their schedule for new patients, particularly one who has been paying out of pocket for health insurance and needs a new leg. Didn’t work, still no appointments available for new patients.

The first step to getting a prosthesis is getting a prescription from a physician, so I called her office today. This has always puzzled me because it hardly requires a medical degree to diagnose that I’m missing a foot and to determine that an artificial limb would be an appropriate course of treatment. Personally, I’d rather save their years of medical training and expertise for when I have cancer and not waste their time with a no-brainer like this. But such is our health care system. (The prosthetics field has not always been as scrupulous or self-regulating as it is now, and I suspect the need for a prescription has its historical origins in a need by the VA to regulate prosthetists’ billing practices. I should look into this.)

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Okay, the photo is a cheap shot. Yes, my footshell is clearly worn out, but that’s not why I need a new leg. That’s purely a cosmetic problem, and one I’m too lazy to fix. My current foot is a model called the Renegade, which is manufactured by a company called Freedom Innovations. It’s a great foot, but the footshells are poorly designed and the toes break off after a couple months. I went into my prosthetics shop and ordered replacement footshells a couple times, but then gave up. I’m just too busy to be dealing with this on a regular basis. But I would like to be able to take my shoes off in public without looking raggedy. I’ve been an amputee long enough that it doesn’t occur to me there’s anything weird about walking around barefoot with a prosthesis. But I do want it to look sharp, not broken down. It’s one of those small things that matter.

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