Support Community for Amputees

Interesting account of what happens before amputation in the case of frostbite, why surgeons wait as long as possible to amputate and how they try to salvage as much limb as possible.

I finally have an appointment to get my problematic residual phalanges taken care of. The hospital created an account for me into their fancy-shmancy "My Recovery Path" online system, in which they told me I'd find messages about my care, imaging results, appointments and the likes.

So I logged in to check it out, and I found my first automated message in the inbox - a 5-page PDF that went something like this:

Welcome to your My Recovery Path account!

You've been referred to the Foot & Ankle team for RESIDUAL TOES REVISION. Before your first appointment for RESIDUAL TOES REVISION, here are helpful documents to help you deal with common toe problems.

• Best footwear for bunions
• Avoiding blisters on hammertoes
• How to care for diabetic toes
• Trimming ingrown toenails safely
• Reducing hallux rigidus pain
• ...

Like... Really?

Clearly the word "toe" in my referral triggered the sending of this boilerplate.

I realize whoever programmed this system means well, and the hospital means well too. And I can see this system is convenient as a one-stop shop to get information about my problem and communicate with the doctors. But the automatic "helpful" advice is a bit depressing...

Exoneo makes 2 prosthetic feet: the Mahi for moderate to high activity levels and the Upya for low activity.

Both have a spring block under the heel and spring-loaded "metatarsals", which helps push-off when walking:

https://youtu.be/YeZNaM0NaNc

You can even assemble and size them yourself:

https://youtu.be/XjdDyo69JJU

More interestingly, it seems the company has a lot of customers in developing countries, meaning there's a very good chance those feet are affordable. Sadly, I couldn't find prices and I didn't want to request a quote for nothing.

I did find an independent review of the Upya foot (in French here, automagic translation here, accompanying video here), so at least it's not like all the information I could find comes solely from the manufacturer.

The reviewer confirms that the foot was competitively priced: although he doesn't disclose how much he paid for his foot, he does say it's "a prowess considering the price at which it's sold". That bodes well.

It's that time of the year again.

It happens to me once or twice a year: all ten toes itch like a mofo. It comes at random, but usually around fall and spring. It might have something to do with large temperature changes, but no matter what I wear, I still haven't found out how to prevent it happening.

I've tried a massage, hot mud pads, cold gel pads, icy-hot balm, going to the sauna, painkillers (the non-addictive kind), and I'm nearing the bottom of this small bottle of bourbon because it's driving me insane.

If anybody has any suggestion, I'm all ears.

What a fabulous passive articulated foot!

It's very light - about half the weight of a real foot - and it looks easy and cheap to manufacture, so that everyone could afford one. In fact, it looks simple enough that most parts could be 3D-printed.

More information here: Introducing SoftFoot Pro: a cutting-edge motorless, flexible and waterproof artificial foot

From the Istituto Italiano di Tecnologia in Genoa in collaboration with the Centro E. Piaggio of the University of Pisa.

Before I go see another doctor about this...

One of my residual phalanges has developed a small bone spur over the years, and another is too long - always has been - and hurts my skin from the inside.

I need to have the bone spur taken care of at some point, and I'd like to have the other residual phalange trimmed a quarter inch or so.

One doctor I saw about this a couple of years ago proposed full surgery, complete with general anaesthesia and more stitches than I really want, and I declined at the time because it seemed like a lot for so little.

My neighbor - who has all his limbs but is at the age when this sort of thing happens - had a bone spur on his heel taken care of, and he told me it was a simple, half-hour, local anaesthesia keyhole surgery with just one stitch and a week of easy recovery.

Does anybody know if that's also an option for small residual extremities bones and whether I should shop around to find a more competent surgeon?

A mosquito bit me smack on a stump, right in the middle of a scar, and the entire scar flared up overnight over half its length like I had a chemical burn or something. It happened last week and it's still red and inflamed.

This scar has been well healed 6 years ago and is normally invisible. The doc says wait and see, but it's mildly disturbing considering it was a single mosquito 7 days ago.

So beware y'all: your skin might look nice and healthy on your tender bits, but evidently it can still be weak and vulnerable.

Oh my!

I thought I had been spared phantom pain, but it looks like my luck has run out.

I've been having lower back pain for the past 3 months. nothing terrible, but constant and annoying enough that I finally booked a doctor's appointment for next week.

And today things took a turn for the worse: I was doing the groceries when electricity started shooting down my right leg all of the sudden. Clearly sciatica has just kicked in. And my missing limbs came back to life with a vengeance too. First time in 5 1/5 years!

Now I'm lying in bed. The pain in my leg had subsided, but the phantom pain hasn't 😢

It's quite unbearable. If anybody has good advice, I'm all ears.

My mom had sciatica for 9 months before she finally got back surgery 30 years ago. I remember she went through 9 months of hell - and she had all her limbs. If I'm looking at the same ordeal with phantom pains tacked on, I don't know if I'll be able to go through it... This truly scares me.

Hopefully a new class of drugs to tackle phantom pain is on the horizon.

I've had cracked skin on my fingers for many years, and I usually try to manage the problem with a bedazzling variety of moisturizing creams - with and without hydrocortisone - that seem to become less and less effective the more I use them.

But since I moved way up north a few years ago, and what with age and all, the problem has been getting exponentially worse. This winter, it's so bad that I went see the dermatologist for help.

He gave me a great piece of a advice that I'm passing along, because it also works wonders on my residual limbs' skin:

Get an air humidifier and don't let the humidity in your home drop below 35%.

It took a couple of week for the cracked skin on my fingers to finally heal. But also, to my surprise, my painful scars got better within 3 days. I wasn't expecting that! My scars are much less itchy and the skin around my residual toes is a lot more flexible, making walking genuinely less painful.

If you have skin problems on your residual limbs in the winter, try an air humidifier!

Pretty neat!

Winter is here, and typically I have problems with the cold. Not that my feet are terribly cold, but the skin tends to tighten around my residual toes and it hurts when I walk.

My solution? Heated socks - specifically the Lenz Heat Sock 5.0 socks.

You can buy the socks ($75 a pair in my area) and the battery packs + USB charger separately, or buy a complete kit with everything in the box.

They're not cheap, and you have to wash the socks by hand delicately, and avoid pulling too hard on them when you put them on. But they really do help with the cold.

Here's what my (old) pair looks like on my feet:

Each sock is connected to one battery pack at knee level, and then the sock is folded over the battery pack to hold everything in place.

The batteries have 3 heating levels, and they last 7 to 8 hours on low. On high, they're depleted in 2 or 3 hours, but they really do get hot: I cracked out the thermal camera and measured 110 degrees on top of my stumps (43 C) and 95 under my stumps (35 C).

And here's what that looks like on the thermal images:

If you have a foot amputation and you struggle with the cold, I highly recommend these socks.

And I think they might help you if you have a below-elbow amputation too, because a friend of mine with Reynaud's disease wears them on her hands and she swears by them too. She says it's lighter and more effective than the thick heated gloves sold for skiing, and she can wear thin mitts over them, which she prefers when it's not very cold outside.

She has the smallest size socks in the lineup, and they sure looks like they could work on a residual upper limb.

I normally practice traditional-style cross-country skiing: it's much easier on my feet than the skating style and it doesn't require as much lateral control (primer on traditional and skate skiing here).

But since last winter, I've been trying to make skating work for me. It's not easy though: controlling the skis is sketchy with shortened feet, and it really hurts when the boots put too much pressure on the side of my residual big toe bones.

For the upcoming season, I decided to make the time to go to my local XC ski specialist and try to find boots that work for me. Luckily for me, the nice store owner is very accommodating and didn't mind spending 3 hours going through his entire inventory to find something that would work for me.

And I did find a good pair: I got me very nice, stupendously expensive 2023 Madshus Race Pro Skate boots: they're wider than they look, the sides that press on my toe bones are fabric instead of hard plastic or some other inflexible material, and the boots are quite stiff - at least for someone with toes. I didn't mean to spend that much, but they really were the only pair that didn't hurt me and looked promising for better lateral control.

And then I proceeded to Dremel away and drill through my brand new, completely unused overpriced new boots ☹️ I installed stiffening bars under the soles so I can kick properly, but in this case, also control the skis adequately enough to avoid falling all the time.

Here is the result:

I used the same method to modify those shoes as the one I used on my old - much cheaper - traditional-style XC ski boots. But I didn't even have to bend the ends of the steel bars to install them on the Madshus boots, so it was quite a bit easier to do this time.

Still, it really hurts to pay that much money for a nice pair of boots and immediately take power tools to them. It sucks that I have to do this to enjoy myself on the track like everyone else.

Now that it's done, I'm happy that it went well and I can't wait for the first snow to come. But that moment when you start trashing brand new products, with no guarantee that you're not going to ruin them completely... boy that stings.

As soon as the snow comes - next Thursday according to the weather forecast - I'll know whether skating is hopeless or not for someone with no toes, and whether I spent half a biggie on something I'll never use again. Stay tuned 🙂

Open Bionics

I lost my toes over 5 years ago. I was blessed with zero pain left past the first few weeks after it happened.

But today at work, I was giving a presentation and got literally got knocked off my feet by 2 seconds of what felt like me touching a high-voltage line with my left foot.

It was intensively painful and caught me completely off guard. It came full on and went away almost as fast, but it lasted long enough to drop me on my knees in front of all my colleagues - a few of whom had no idea I'm missing bits and wondered what I just did that for.

Anyhow, it was just 2 seconds and then everything went back to normal. But I have no idea what happened after so many problem-free years. Maybe a nerve ending finally gave, or a nerve got pinched or something?

I'm really hoping it was a one-off, because I sure don't need that to happen again. It's not so much the pain rather than the total surprise. I'm a bit scared that it might happen again. It would be a major downer if I started having unpredictable bouts of pain after thinking I had been magically spared for so long...

I have this almost phobic fear of blades since I had a bad accident with a knife as a child. Most anything that cuts in my house if of the dull variety, unless I really, REALLY have no choice but to use something sharp.

That includes my lawnmower's blade. I keep it dull on purpose because I have this irrational fear of getting a deep cut while clearing grass buildups around it. Also, it's a great excuse to hide the fact that I'm much too lazy to bother sharpening it regularly :)

Earlier, I was mowing my lawn, and what with the lush, wet grass we have around here and the dull blade, the lawnmower was jamming and stalling noisily every 30 feet. My neighbor - a real Wilson kind of character - called me from behind the fence and said:

"Dude... Your blade needs honing. This is just painful to listen to!"

"Yeah I know. But I don't want to. I keep it dull on purpose."

"Why?"

"Well, I don't want to end up in hospital with... missing..." The guy was looking at my feet and gave me that look... "nevermind."