Considering Elective BTK Amputation

[grommet]

My name is John and I am 56 years old.  I have severe non-diabetic Charcot deformity in my left foot involving both the mid-foot and hind-foot.  I am happy to provide great detail on what led up to this, but not sure its needed to address the concerns I have.  In short, I have been highly active my entire life (played D1 college football, 6 years high level club rugby, recreational sports, backpacking, surfing/swimming into my 50's).  This mess came on quick - in less than 5 months went from a normal ankle to an ankle you can't recognize.

I have had two opinions so far.  Both Drs are recommending Plantar Fusion - essentially fusing the entire mid-foot and ankle.  I will have zero mobility in my ankle for the rest of my life.  I will be able to walk, ride a bike, swim and hike on flat surfaces, but I will (obviously) walk with a gimp.  The surgery is very complex and the recovery long and difficult (12 weeks non weight bearing, with full recovery in 8 to 10 months).

I am seriously considering elective BTK amputation.  I want to lead a normal life and I don't want to go through this difficult surgical and recovery process and then, a couple of years down the road, realize my quality of life sucks so bad I get an amputation after all.

The advances in prosthetics are truly amazing.  I have been researching every day on the different types of devices available, skins, etc.  I have gotten my head around losing a limb (my wife and kids aren't there yet, but they'll support my decision).  I know this is silly, but my main concerns right now are not routine during the day, but sleeping and showering.  I understand the prosthetic cannot/should not be worn at night or while showering.  How do I get up at night for a bathroom visit?  Crutches?

Thanks for any help you can provide.

[spyder]

Hi John,

i´m AKA since 2018 and i had and the end(before amputation) no akle control/feeling too.

From my experience so far below knee amputee life is fine, as Long you have enough stump left. Shure it will hurt in the begining cause your Skin etc. Needs to get used to it. Having a shower should be no Problem(should be waterproof), sleeping without cause air Needs to reach your Skin, i place my wheelchair next to bed and in worst Scenario i would use crutches but ...

Think well about it cause after the cut it´s history, but if there is no Chance to get better don´t risk to much, as shorter as worser !!!  

Greets Roland

[stonecutter]

Hi John! Welcome to the forum. I honestly didn't know what a Charcot deformity was so I googled it. It looks like it can be devastatingly painful.

I am a left below-the-knee amputee - the result of an industrial accident, going on 27 years ago now. My recovery from the initial amputation took a bit longer than normal because there were some related other issues (infection, other trauma) but the similarity in our stories was there was a fork in the road where I had an ortho surgeon and plastic surgeon arguing over the viability of keeping the foot which had seen full-thickness burns, gangrene and compartment syndrome. They said they could fuse everything, I'd continue to live with pain and a lack of sensation in below my ankle, and there would be a definite possibility that I would be back for an amputation eventually anyway.

Leaning towards amputation was easy for me, I was 19 years old, and wanted to get on with it. It was June and I had school at the end of August. Honestly - I have no regrets. I do just about everything I did previous to having my amputation. I got married, had a kid, I've had an amazing career so far. It didn't hold me back from having a good life!

I, like most, if not all amputees, take my prosthesis off to sleep. it leans against my nightstand. When I have to get up in the night, it takes less than 15 seconds to put on my prosthesis and I just walk around like normal. It takes some practice to put it on in the dark and all so I don't wake up my wife, but... she's used to it, and it's just normal activity now. It's beautiful... she farts and rolls over and has no memory of it in the morning!

For showers - when I was a new amputee, I used a shower stool. Get in the shower, have a seat - do your thing. if you have to stand up to clean ... parts.... you just use the stool to kneel your stump on... it serves to support you and also as a landmark for your brain to keep your balance. For a while - probably about 15 years or so, I didn't use a shower stool and I just did my best to stand with a hand on the wall so I can landmark my balance... In 2012, however I went for revision surgery (I had a misshapen stump and some residual nerve damage that left me prone to infections) and I started using a shower stool again. I elected to continue using it and still do to this day.

This (click me) is what my shower stool looks like. When others are using the shower it sits outside the shower and acts like a good shelf for my wife to put her towel and Bluetooth speaker on when she's having her shower...

Ask your questions - you'll get answers from experience here!

Thanks!