Born an "amputee" and facing a new amputation

[azep22]

Hello everyone,

Ive been struggling a bit with my situation and lack the local social support or closr family. So, from what google had turned up this is a good forum and hopefully can meet some other amputees who have advice. As my situation is a bit unique, I wanted to introduce myself.

I'm 29 and I was actually born missing my left arm right below the elbow, and my right hand has just 2 fingers (not sure which ones they are lol, but I don't have a thumb, and have 2 fingers about the length of an index finger). Growing up, I never actually considered myself an amputee because I was born this way. I've had nearly 30 years to adjust and I feel I've gotten pretty good at it!  : ) And because of that, I never really had to deal with "losing" a limb because I never knew any better! That is until my current situation.

2 years ago I was the passenger in a bad car accident. My right leg was heavily crushed and I've endured more surgeries than I even care to remember. The positive is I have been able to walk with a cane and not be in a wheelchair. Unfortunately vascular issues have crept in and as of 3 days ago, my doctor team has discussed my best option to avoid inevitable bone infection is a hip disarticulation amputation. It would seem than being a lifelong amputee would help, but in reality I can't even fathom this, and am really worried for a few reasons.

First reason is I can't really use crutches. My left arm ends so short below the elbow, if I never tried to bend my stump up, most people would assume I have an above then elbow amputation. For this reason I don't wear a prosthetic to grab a crutch or cane. Second, my right hand being thumbless, it's very difficult to hold a crutch handle. When I broke my right ankle in high school, thankfully I was weight bearing on it, so i could get away with one modified crutch that used my elbow to bear the weight. One crutch won't work in this case with only one leg.

Second is a wheelchair. Because of the extremely high amputation level, I'm worried it may be impossible to get a prosthesis (please tell me if I'm wrong here!) and I will be in a wheelchair for life. I'm assuming I will need a power wheelchair, as I can't move a wheel with my left arm and my right will be difficult, but I can easily operate a joystick with my fingers; I can type 60 words a minute! ; )

Am I a lost cause on having my independence in the future outside of a wheelchair? Is there anyone here who actually got a prosthesis for an amputation of an entire leg that gets by with one crutch? I'm not apposed to a power wheelchair if it's my only option, but being who I am, I want to fight if I can! I'm not married or in a relationship, nor do I have family within 1000 miles, so a full time person to help me is not going to be easy to find. Luckily I have a great boss and Job at a coffee shop that is already understanding and prepared to make accommodations for me, but I'm still scared out of my mind.

Sincerely
Alec

[cherylm]

Hi, Alec, and welcome to the Forum! Wow...you do have quite a situation there, and I'm not sure if we have a member who would be truly comparable to you...I'm just a plain old single below-knee amputee myself, but I do know a couple of fellows who are hip disarticulates (which sounds like what they're proposing for you). I've also read about one younger fellow who is a hip disartic and claims that he can walk without crutches or other mobility aids...but I've not actually seen how well he is able to do it.

Forearm crutches might be an option for you, perhaps with some additional customization to give your stump and/or fingers something to help you support your self. And (I really shouldn't even mention this, as it's NOT healthy for the whole leg side, but one of my actual disartic acquaintances gets around quite handily by hopping on his good foot. (He's also in his mid-20s and has always been very active, soooo....)

I'm not sure about the latest technology for hip disarticulates, but I know that there have been constant improvements in prosthetics for folks who have lost basically a full leg. They DO tend to be harder to control and move than a standard above-knee amputation, but they have supposedly been getting better over the years. I'm just not sure how good they might be for walking longer distances. If you can manage to get in touch with someone who has lived with a hip disarticulation for a while and "pick their brains," it could be really useful for you. If your medical team can't put you in touch with someone, you might want to contact the Amputee Coalition (http://www.amputee-coalition.org/) and ask if they could put you in touch with a Peer Visitor. You're likely to be a difficult match for them, but they just may have someone...and I'd say the odds would be good that they'd at least be able to put you in touch with a hip disartic.

If it helps to think about the fact that you actually HAVE good experience at living as an amputee, realize that being born with your arms as they are DOES give you a real "head start" as you've lived your entire life as a congenital amputee. As you've been getting along just fine to this point, you really will have to only worry about how to adapt to the leg amputation. Not to say that it will be easy, but you've already developed the skills to type 60 WPM with two fingers, so that's pretty darned impressive and bodes well for being able to figure out how to get around one-legged.

Also, keep in mind that you are not confined to only ONE way of keeping your mobility and independence. If you can learn to walk with some combination of a prosthesis and forearm crutches and/or a walker that allows you to lean to help support yourself for "shorter" distances or "good" days, and then have the option of a power wheelchair for "longer" distances or "bad leg" days, you should be able to manage on your own. If you have not needed a full-time caregiver before now, I don't think it would necessarily be something you'd need in the future.

The closest I can come to giving you an example from my own life post-amp is that I was discharged home from rehab to a small, non-wheelchair-accessible apartment...and before I could even begin to start being fitted for a prosthesis, I had an accident that caused retinal bleeds in both eyes. So there I was: newly amputated, living alone, unable to reach my bathroom, and (temporarily) totally blind. I made it through with the assistance of an occasional, part-time caregiver and a handful of friends from my work who would dash through once in a while to do some small bit of work for me. I know it's not truly comparable to your situation, but it is an indication of being able to "get along" if truly needed.

Actually losing a limb that you're used to having around and depending on IS an unnerving thought...but you'd be surprised how quickly you can start to adjust. And each little bit of improvement you make "primes the pump" with optimism that you will be able to continue to improve.

Do take a look around the various threads on the Forum, and DO ask any and all questions that come to mind...the better prepared you are, the easier your adjustments will be. Good luck in what you're facing!

[stonecutter]

Welcome to these forums! Please keep us informed about your journey.

Thanks!

[azep22]

Hi cheryl and stonecutter, much appreciate the replies, and good to people active on the forum

It's been an emotional roller coaster to say the least, but I'm pushing through. I was actually going back and forth on whether I should post or not, because I didn't want those with less severe amputations to be offended or think my story was a pity story, but from your reply and reading more here it certainly doesnt seem like that kind of place : )

I've been living with stiff joints and severe pain off an on since the accident, and haven't had great mobility as is (I wear a leg brace). So in one way this amputation could be a Godsend, in other ways crazy. If I may ask, how did your amputation come about?

I actually found a video online tonight of a girl who lost both arms and used forearm cruthes, so I'm starting to think this is possible with customization like you said!! I saw where they can actually make a socket for, in my case my left "elbow"  that is attached to a crutch. My right side should be easy, after I was done feeling sorry for myself I did some more experimenting and just a different hand grip should be usable. I have always had aspirations of being an engineer, so I drive my doctors nuts with suggestions on things LOL. My hand is only as wide as my 2 fingers and maybe some base of a thumb in there, so there is just not a lot of weight bearing surface.

That's really funny about hopping on one leg. I did do that a few times when my leg was in a cast and my mom always yelled I was going to hurt myself, but I never did!

Thanks, I will visit the amp coalition, my PT actually told me about them as well but I never got around to contacting anyone. A hip disarticualtion is what they have proposed worse case. Food to hear about the prosthetic advancments. I have been watching as many youtube videos as possible and if this is what I end up having to go through it doesn't look like the end of the world after all. I may have a goofy walk or limp but hey, i dont exaclty blend into the crowd as is, so it will just have to be my new norm like all the other things ive overcome.

Much appreciate the kind words and encouragement about being born with my arms as is and still getting along. I was a part of a military family, so I moved around quite a bit as a kid, and new schools at the time meant terror, but now I realize they were just training grounds for my current situation. Being a half asian american (my mom is Korean decent) it was another thing that has helped bolster my confidence that being different is ok!

That's terrifying what you had to endure with your amputation on top of having eyesight issues! I won't ramble on in this post in a intro thread but I'm curious how long the blindness lasted

Last but not least I have to admit although I can type at 60 words a minute, I do kinda cheat (I have an adapter for my left elbow that acts as a pencil holder I hit keys with, so I actually have "3' fingers haha, and although I type super fast I spend just as long or longer correcting then millions of mistakes I made, LOL.

Alec

[cherylm]

Hi, Alec...good to see that you've settled enough to start thinking logically and doing research! I know it can be overwhelming...even though my amputation was elective, I still went through rounds of doubt and the occasional ride on the old emotional roller coaster. When you start gathering actual facts to deal with an actual situation, just being able to focus on something real can be a relief!

One thing you will find as you start interacting more with the amp community is that we tend to be very accepting folks who want to do all we can to help others facing the same situation. For many of us, we had little or no contact with amputees before we became one...thus the numbers of us who join forums or real-life associations, train as Peer Visitors, approach random strangers with a less-than-the-normal-allotment of limbs just to chat.......LOL! At any rate, you'll find folks who will offer up whatever they know that might help you out.

My own amputee journey started with an incredibly stupid accident. I broke an obscure little bone in my foot...while opening my bedroom curtains. I wasn't even standing on tiptoe...just rose up slightly on the balls of my feet, wobbled ever-so-gently, and heard a "crack" and looked down to see "something" moving under the skin, going across the top of my foot and settling in near my ankle joint. What followed was several long hospital stays, four attempts to repair the break surgically, that same obscure little bone puncturing my skin on one of its many trips across my foot and back down to my ankle, and the development of an antibiotic-resistant infection. Amazing how such silly little things can have such a huge impact on your life!

I won't answer for Stonecutter...but he's written a detailed outline of his much-more-dramatic amp story which you can check out under the "Share Your Story" heading on the Forum. The thread is called "What happened to you?" and it makes me very thankful for my own stupid little accident!

You know, the whole eye issue, in its own funny way, helped convince me that being one-legged was not a major issue...I missed my vision far more than I did my leg. I recovered from the retinal bleeds very slowly...it was about three months before the blood cleared from my right eye to the point that I could start to make out more than just light and dark. My left eye finally required surgery to literally suck out the blood clot that had formed and attached itself to the inside of my eyeball. I still remember the day that I realized that I was "seeing" with my right eye: I was sitting around LISTENING to the TV, glanced in the direction of the set, and thought "Gee, Doctor Phil is wearing an ungodly bright tie!" Followed immediately by, "Hey! I can see Doctor Phil's ungodly bright tie! Hooray! I hope the rest of him turns up soon!"

You're right, you know...the fact that you've made it through so many challenges in your life has helped make you a person who can tackle whatever else comes your way. Sometimes that's more reassuring than others, but it's true. Resilience is important in anyone's life, but even more so for an amp! Don't ever sell yourself short.

[kai2020]

Not sure if this is helpful or not, but Ottobock has a cool prosthetic for hip disarticulates. It is called the helix hip joint. You can find some videos of people walking with it without crutches and there is even a video of someone climbing stairs (up and down) with the hip (and no crutches or anything).