Ask The Amputee

Haven’t done an “Ask The” since my infamous one following Senator Craig’s ill-timed foray into restroom quickies, and I’ve recently embarked upon an interesting new phase of my life, so I figured it was time.

A little more than six weeks ago, I underwent a below-the-knee amputation of my leg and foot. Since then, I’ve been healing and doing physical and occupational therapy at various local institutions. I very recently (within the last week) began the process of shaping and shrinking the stump to accommodate a prosthesis. I haven’t so much as scented one of those things yet, though, so anything involving that I’ll have to either defer until later or go off my incomplete understanding of what’s to come.

So have at it, folks! And if you, also, are an amputee, feel free to chime in. Especially if you have more experience and time in…like I said, I’m a rookie.

Shit, I didn’t know. I’m so sorry.

My first question would be – is it true what they say about phantom limbs, and how persistant is it?

What happened? Diabetes? Accident?

Guin, not a problem. I mostly only mentioned it here in one thread, and over at the G Boards in three.

Yes, phantom sensation is very real. It’s intermittent for me…sometimes I’ll feel it and sometimes I don’t. The nerves that originally went into the foot are still mostly extant in the stump, so sensations of things touching the stump FEEL like they’re happening to the foot or calf. For instance, the stump shrinker I’m wearing right now is snug by design (it’s actually a compression garment to push the edema fluids out of the stump), and I have a constant sensation of my toes being in tight socks while it’s on. It’s actually part of my physical therapy for me to stimulate the stump so that the nerves get used to where they are NOW instead of where they once led.

Phantom sensation CAN be dangerous, especially if you tend to be the kind of person who doesn’t completely wake up when you go to the bathroom at night. If you’re feeling “normal” foot sensation from your stump, you might forget that you don’t HAVE a foot and fall when you try to walk to the bathroom. I have luckily not had that happen yet, since I tend not to have to go in the middle of the night.

Not to be crass, but do you fall over a lot? I’ve had my legs for a long time, I feel like if one of them was missing I’d be constantly forgetting it wasn’t there and trying to stand on it when I rolled out of bed or got out of a chair and basically spend the first few months constantly crashing to the floor.

JayJay, I’m sorry to hear about you losing your leg. I hope this doesn’t come off as insensitive, I don’t mean it to be, and maybe you haven’t had enough time to process it yet, but after living without a leg for awhile can you answer the age-old question: given the choice, would you prefer to miss an arm or a leg?

@Loach: My stupidity happened. Diabetes, first of all, which caused numbness neuropathy and slow healing in my lower extremities, then me ignoring warning signs like twinges of pain and HIDING stuff when I do feel it from my partner because it’s a family trait to “ignore it until it goes away”. I managed to incur a wound on the bottom of my foot (still don’t know where it came from or when it actually started), which didn’t heal and I didn’t feel because of my neuropathy. It became infected and I started to get sick on New Year’s Eve, having to have a friend drive from Lancaster to Harrisburg to pick us up from a NYE party we were at and drive us home. I spent January 1 in bed, with intermittent digestive symptoms of serious infection, when my partner basically said, “No more bullshitting…I’m calling you an ambulance!” And so it was done. I spent a week in the (lesser) hospital with an IV antibiotic drip.

They wanted to do a bone scan to confirm or rule out osteomyelitis but refused to put me on the table because I thought and told them I weighed about 420 and the table’s limit was 400. Instead of thinking, “This is a hospital…what are the odds they’ve got a bariatric scale somewhere to confirm that weight?”, the infectious disease doc and I came to an agreement that I’d do intense dieting and come back in a few weeks to have the bone scan done. They discharge me and send me home.

I spent the next five days in varying states of pain and residual illness, until my partner again worried that I seemed really sick and called another ambulance, this time going to the (better) hospital in town. They did a general anesthesia/OR debridement of my foot (which should indicate how bad it was) and on the findings of that, scheduled me for the amputation. The infection was so bad at that point that the first week or so into this hospital stay I was generally hallucinating and delirious…I was convinced that my IICU room was some sort of business lobby, that the building was inhabited by an evil spirit conniving to manifest in the material world, and that there were swarms of flies and gnats filling the room most of the time. I was seriously out of it.

Surprisingly, except for an initial wake-up immediately after the surgery when things were a little bit nightmarish, I have had virtually no pain from the surgery in all this time. Everyone from beginning to present has consistently praised the appearance and healing of the incision. It’s like my major talent is recovering from an amputation! Who knew?! And how often do you get to show that one off?

Actually, I’ve fallen all of three times since the surgery. Once was at the beginning of occupational therapy when we tried to do a toilet transfer with the grab bar. I fell and came down hard on tile with the stump. There was a LOT of blood, which scared the tar out of me, but on examination, only one suture was torn, so it must have been a hematoma that got pushed out when I hit. The second time was when physical therapy first tried to get me to try steps one-legged. They do this by having a single step that you hop up on and down off to practice the one-legged hop. I got up fine, then on the dismount I only got half my foot off the step. I overbalanced and fell, but managed to keep my stump up so it didn’t hit the floor. The third time was quite recently, when my OT forgot that I use a bariatric walker and brought me a normal one to do a transfer to the mat. I felt like the walker was buckling and overbalanced myself, and half-fell…unfortunately, I can’t come up from a half-fall without assistance, either, so had to be hefted up by about four therapists.

Otherwise, though, I’m ultra-careful. I get up slowly, I sit slowly, I make sure of my balance when I’m ambulating with the walker…a lot of avoiding falls is just common sense and remaining aware instead of letting your old instincts take over.

Leg, definitely. Yes, it’s a major bummer and nuisance while you’re waiting to heal and to get the prosthesis, but after that it’s not THAT different from normal. Whereas with the hand, you lose a LOT…affordable prosthetic hands don’t really come close to what a real hand can do. Half of my livelihood and a lot of my entertainment involves typing, and typing one-handed, while something I’ve DONE on occasion (cough) , isn’t something I’d like to be forced to do all the time. That’s not even to mention fine motor control in things like driving or even just picking things up and putting things down. With the prosthetic leg (especially with a below-the-knee amputation like I have), the only thing it really has to do is provide balance and stability. A prosthetic arm and hand, to truly emulate the real thing, has to do a whole lot more, something that really requires a computer to control, which jacks the price very, very high.

Have you thought about the type of prosthesis you want? I had a prof in college who lost her leg above the knee in a motorcycle accident. Her prosthesis was awesome. It was metal and responsive and she could *run *with it on. Not that getting amputated is awesome, understand, but the technology really is.

I’m sorry you had to suffer this complication of diabetes Thank you for this thread. I wish you could talk to some of my diabetic patients who are distressingly cavalier about foot care. One keeps causing wounds to her feet by picking at her calluses with her fingernails until it bleeds and then I have to develop a plan to heal it.

I haven’t even really seen my choices yet. I do know I’m not going to bother with the cosmetic leg type…they don’t really fool anyone and they’re kind of blah. I don’t mind exposed mechanics, and I’m sure I can find a lot of options for customizing the socket out there. As far as foot, I’m not a runner, so I don’t think I really need the spring feet. As long as it allows me to walk at a decent pace, I’ll be happy with it.

I had a student who was a below knee amputee for trauma. He would park in the handicap spot and then rollerblade to class.

You can’t really make someone understand until they’re ready to, and unfortunately, for some people (like me), that moment only comes when it’s too late.

Sorry to hear about your “adventures” and the ultimate outcome. Glad you seem to be in such high spirits about all of it!

Are you doing any therapy with learning how to use crutches or a wheel chair, or is it just “right to the prosthesis for you!” Was not having a prosthesis an option?

Do you think that people are treating you different after the surgery?

The wheelchair’s kind of intuitive…I was doing pretty good at maneuvering and self-propelling from the beginning on the chair. It’s kind of like rowing, as far as maneuvering goes…you push the wheel on the opposite side of the direction you want to turn and keep the wheel on the side of the direction you want to turn still or at least slower.

We’ve worked with crutches to try to go up steps one-legged. I hate them, really.

Not getting a prosthesis was NOT an option. We’d have to move in order for me to live in a wheelchair…our house isn’t big enough and we have no bathroom on the 1st floor. It’s the major reason I’m still in skilled care and therapy…I can’t go home until I can walk again. Besides, I don’t want to spend the rest of my life in a wheelchair, no offense intended to those who have no choice in the matter.

Well, there are two aspects of this question to answer, the simple and the complex. The simple answer is yes, I have noticed looks I didn’t get before, even in the rehab hospital from people who’ve come to visit their therapy-needing but intact relatives. It’s a kind of sidelong glance at the empty pantleg.

The complex answer is yes, also. This aspect has to do with how people think about how they use the space they’re in, and I was as guilty of it when I was intact as anyone. For instance, the threshold to the training bathroom in the therapy gym, of all places, is actually about half-an-inch higher than the floor of the therapy gym itself. It’s kind of murder self-propelling a wheelchair over that threshold. Last week, I wanted to go out the front doors to sit in my wheelchair on the front porch because it was so nice out, and I wheeled myself to the lobby and discovered that they (meaning maintenance) had temporarily stored the unused wheelchairs in front of the ADA-required Open Door button! In a place where 90% of the patients are in wheelchairs! I rolled back to my room to get my grabber, which I then used to push the out-of-reach button, and complained to the receptionist when I came back in and had calmed down some.


Sorry to hear about your illness and amputation, but thanks for sharing. Best wishes on your fast recovery.

I do have a question regarding your phantom sensations - answer it if you want, ignore if you don’t.

Has any doctor suggested or alluded to mirror box therapy? I don’t know how significant your phantom limb feelings are, but I got really fascinated with mirror box therapy when I first heard about it a few years ago.

Anyways, get well quick. Here’s hoping to your speedy recovery!

Thanks for the answer. That’s very enlightening. I wish you the best in your recovery.

Nobody’s mentioned the mirror box therapy to me (and that’s a fascinating theory!), but that’s probably because I haven’t had phantom pain, just sensations, like that my foot is touching the floor or that I have a snug sock on my foot. No actual pain, so not really anything to alleviate.

So, you must have had the procedure done pretty cheaply, right?

I’m so sorry