2 replies to this topic

[IMCrazyJz]

I've been a paraplegic for the last 21 (almost) years. I was in a car accident when I was 5 1/2 MONTHS old that severed my nerves, but left me an incomplete injury because I still have some feeling except no movement in my lower extremities at all. I'm a T3, technically, but I am able to move enough of my body so that it seems like I'm more like a T12 or so. Anyway, because of massive problems from hip surgery back in October '06 & eventually a staph infection I became a full hip disarticulation amputee as well in July '07. When I had both legs it was simply not feasible to even consider trying to walk because supporting all my weight with my upper body would have caused too much damage to my shoulders. Now that I don't have two dead weights to worry about lugging around, I am considering learning to walk with prosthetics & forearm crutches. Problem being that I still can't control any of my lower muscles so I'd need basically a robotic prosthetic that would do that type of work for me. Not to mention a straight leg brace on my remaining leg to help that leg support my weight...although, if it would make my life easier, I am willing to get the other leg amputated because frankly I have no use for it what-so-ever. A lot of times it's just more of a hinderence than a help. My question is, has anyone ever heard of any type of prosthetics that would 1. be able to be utilized for a full hip disarticulation & not just an above the knee amputation 2. be motorized/robotic/bluetooth controlled (I've heard of one soldier who has double bluetooth controlled prosthetics for his above the knee amputations) & 3. be able to support my weight with the help of forearm crutches without me having to put all that strain on my shoulders so that I don't risk ruining my rotator cuff???

I'd really appreciate any input anyone might have! I've been with the love of my life now for 1 1/2 years & he wants to marry me down the road & I want to be able to have more of a "normal" unrestricted life with him. Frankly, at this point, for the near future my main wish is just to be able to WALK down the aisle for our wedding & actually dance our first dance with him without him having to carry/hold me (not that that's a bad thing, but it'd just be nice to actually stand up at the alter with him then dance with my man at our reception). Then on down the road I'd like to be able to plan a vacation with him without him saying, "That'd be a fun place to go to, but you wouldn't really be able to get to some of the main attractions so it wouldn't be that fun for you". Or even just be able to walk down the beach with him because anyone who has tried the *sand chairs* will agree that those things are incredibly uncomfortable, pain in the butts to use & not romantic at all. Also, he wants kids & I'd actually like to be able to lift my kid up in my arms when (s)he's crying without worrying about knocking their knees or any other part of their little body on some part of my chair on the way up. Plus, walking on a vacation with our kids would be a lot more fun because I could see missing out on a lot with our kids because they want to go wherever & I physically can't in my chair.

Please don't get me wrong that I'm being whiny & woah-is-me sort of person because I couldn't be farther than that, I absolutely LOVE my wheelchair & have always seen it as an extension of me. I'd just like the possibility of being able to walk & be more accessibly ready for activities when the moment calls for it.

Even if you haven't heard of anything that will help my prosthetic problem, I'd even appreciate this getting posted as many places as possible. The more people that see it, the more chances there are that someone will have heard of something that will help me!

Thanks!

~Lauren~

[kewlcatkez]

Hi LAuren,

Good to meet you, you sound like you know what you want and are prepared to put in the work, so it may very well be that you can find some prosthetics which will assist you.

What I will say, when looking at what you wrote about considering amp the other leg is that there are a few draw backs which I would like to look at for a minute. I do appreciate that this is only part of your question, but this is how my brain works..lol

from my experiences, is that any time there is a "hind quarters"/full hip disarticulation amputation, there is a risk that with a bilateral one that you will get breakdown of the skin and muscle when you attempt to sit. As you can imagine without BOTH ischial bones, you will not have any balance and will require greater centre off gravity mastering than you do now with a unilateral. I know that you function at a T12, but if you are really a T3, it may be that without the other side and the other ischial bone, you will be resorted to the function of T3. If the prosthesis is mounted permanently/ has a component which is, then there is risk of infection and poor healing to the site, plus forces placed on it from your paralysed upper body may also make it difficult to heal/may split open due to scar tissue being weaker..I know that some people do have prosthesis for AKA, I am just pointing out the disadvantages from the viewpoint that you have choice on one leg/side...I hope this comes across.

Also, I would suppose and presume that as you are obviously very aware of your body, that you have considered what happens in the future as time goes on and you age? I mean, yes there may be significant progress in further prosthetics, but this still may not be a match for time, difficulties with your shoulders from the crutches and accident/injury and wear and tear. Then that may mean that you are back in your chair with no real ability to balance and sit and with breakdown to the tissue/pelvis. I just have seen this with individuals who granted where compromised in other ways and didn't have you drive and agility - but they also didn't have SCI..

Now it is not for me to say that your ideas and wishes are going to be possible or not and although I have sounded negative above, I believe that you should always put into play solutions as far as possible for the wosrt case scenarios and the work from there! I do hope that you are able to try to pursue - as far as possible with your desires. People who have had both their legs taken without being able to look into it have no other choice, but in this case, due to the fact that you are thinking of having surgery to the other leg means that you do have some choice about that leg..


Have you got a Surgeon who is willing to look into this for you? Have you contacted the major Universities and the MoD/your country's equivalent to ask for thie advice as to where to direct you?

here are a few links:

R&D Horizons Robotics and Electronics reasearch...
interesting background/related info, not specific

http://ieeexplore.ie...85/00933191.pdf
Design & control of a powered Transfemoral Prosthesis
Horizons in Prosthesis Development for the Restoration of limb Function


Best wishes with whatever decision you make/ path you take,
CONGRATULATIONS on your engagement and future wedding, I am sure it will be fabulous and magical no matter how you get down the aisle,

I hope this is of some use,

Take care,

K

[kewlcatkez]

IMCrazyJz, on Mar 1 2008, 12:55 PM, said:

Also, he wants kids & I'd actually like to be able to lift my kid up in my arms when (s)he's crying without worrying about knocking their knees or any other part of their little body on some part of my chair on the way up. Plus, walking on a vacation with our kids would be a lot more fun because I could see missing out on a lot with our kids because they want to go wherever & I physically can't in my chair.

Hello again Lauren,

I just wanted to reply specifically to the above in your post.

As I said above in my last reply, I am paralysed (chair user for around about 3 years). I also have severe dislocating EDS ( means I dislocated multiple joints, multiple times daily - which although were present before, were not every day..now they are as a result of hormonal influence, an accident and the fact that it usually progresses due to the trauma of the proceeding dislocations etc etc.- has gotten worse over last few years). I also have the other stuff which goes with all of this ( pain, POTS etc). I am a Mother to 2 beautiful children ( 5 and under).

The paralysis means that I have the balance issues and the chair (to get in the way as you describe above), and I also am unable to lift my children, I was not able to when they wre babies, yet you get around it, as I am sure that you already know.

What I want to say is that, there is always a case of the "grass being greener" - what I mean is that I know there would be restrictions and obstacles in the way when wanting to lift your baby/child of the future, but swapping a chair for robotics and crutches may only shift the emphasis and shift the 'issues'. Making it a rose of a different name....

Believe me, kids who have had the wheelchair in their lives since they were babies - due to their parent/s using one, adapt very very well. In fact to them, it is how things are and is not adapting at all. They actually are aware of what they should and shouldn't touch on the chair and when to get out of the way. My two actually would be told not to touch and why (even when a baby in age relevant words, ie "ouchy to touch" when little, etc).

Believe me there are pros and cons to every situation as I am sure that you already know, I just would hate for you to pin hopes on the thought of exchanging your chair for the robotics etc al, only for it to bring equally difficult obstacles.

Yes I have missed out on some things but I try and make alternate ways of doing those things where possible. yes access is not as it should be in many aspects of our Societies no matter where you live, but slowly things are changing.

Also believe me, pushchairs and strollers/prams can be just as much of an obstacle to doing things and going places..To remove the chair and replace with the robotics - would it be doable to go those places?

I do wish you the best with everything, whatever you decide. Perhaps you need to pursue this avenue to see who it feels to stand due to the fact that you were injured so young? - just trying to understand.

Perhaps there is scope to have bracing to the remaining leg and prosthesis to the amputated side? or maybe other combinations. I would just urge that you speak with your surgeon and SCI specialist and ask to be put in contact with as many people with either/or or maybe if lucky, both the situations.....
Amputee Coalition of America may have some information for you or someone to point you to.

also
Amputee Online

just for background (although refers to BKA) para compared to LLA


and again, for future reference, some background to pregnancy following SCI and bilateral leg amputation: American Journal of OB/GYN

I hope this helps,

Take care,

K