Dilemma: keep walking & screw up my body worse, or stop walking & loose the ability?

[Saranoya]

Hi,

I'm dealing with a problem that I'm sure some of you wish you could have, but I thought some of those here who have incomplete injuries might be able to share some insights.

So here's the situation: I have CP (as in cerebral palsy, not central pain, luckily) and a screwed-up knee that's permanently stuck at a somewhat awkward 80-degree angle.

I can still use my right leg a little when I try to walk with crutches: I just sort of hang in my crutches, while putting a tiny bit of weight on the tip of my toe. Because of CP-associated tendon stiffness, I can't put my other foot completely flat on the ground either, so I kind of need that little bit of weight-bearing on the screwed-up leg in order to keep my balance.

Now, as it is, I can't really walk without a second person there to spot me. I've tried many times, only to fall every time, so I stopped doing it. I'm not too keen on the possibility of fracturing another limb, and screwing that one up, too. So right now, walking isn't functional for me.

Until a few days ago, I was fine with that: I'd just keep walking with my physical therapist, until I find a surgeon who can fix my knee. But then I went to a new physical therapist, and she said that the way I'm walking right now, I run the risk of making things worse by screwing up my back, too. I don't know exactly what she meant by that, but it scared me a little.

The thing is, every time I go see a doctor, they tell me that the problem I have with my knee is fixable. Never mind that I've had five surgeries already, which were all supposed to solve my knee problem and didn't. I think at this point, the only way I'm ever going to have a functional knee joint again is with knee replacement. This is just my personal opinion (I've never had a doctor offer me that option), but I think it's a fairly well-informed opinion.

Now, here's my problem. The one doctor who did once mention the possibility of giving me a prosthetic knee joint, discarded that option immediately because of my age (I'm 25) and the fact that because of my CP, he couldn't be absolutely certain that a prosthetic knee would, in fact, allow me to walk again. Just to clarify: I was always able to walk independently before this knee thing happened.

So then the question becomes: do I keep walking in therapy, just to maintain my muscle strength as much as I can, until I find a doctor who's willing to entertain the possibility of replacing my knee? Or do I stop doing it, so as not to screw up my back (which is what's happening now, according to my physical therapist). My fear is that by the time my knee can be fixed (if it can ever be fixed), I'm going to have additional problems that inhibit walking -- problems that may plague me for the rest of my life, even if I stop walking altogether.

I know this is a very specific situation, but I'm pretty sure there are some people here who've faced the same dilemma, if not for the same reasons. So of those of you who have, I ask: what would you do if you were in my shoes, and why would you do it that way?

[SCI-Nurse]

What is exactly wrong with your knee? What is the cause?
Did it occur because of spasticity? If so, would it just occur with another surgery or knee replacement?
Are you going to a rehab doctor who specializes or atleast knows a lot about CP and to a knee specialist? There are doctors who do only knees and maybe hips and I would consult with one of them and a rehab doctor or CP doctor for this complex situation.
CWO

[Donno]

Most of the folks that I know with CP have had to move to chairs at some point. Having been in a chair for 18 years now, I have to say that being able to get around with relative ease far outweighs the satisfaction of being able to stand and walk with difficulty. At your age, it may prove to be an advantage to get good at wheeling now rather than learning the tricky things like negotiating doors etc. when you get older and have diminished mobility/muscular control.

[Eileen]

Originally Posted by Donno

Most of the folks that I know with CP have had to move to chairs at some point. Having been in a chair for 18 years now, I have to say that being able to get around with relative ease far outweighs the satisfaction of being able to stand and walk with difficulty. At your age, it may prove to be an advantage to get good at wheeling now rather than learning the tricky things like negotiating doors etc. when you get older and have diminished mobility/muscular control.

Echo from me too on this statement. It is all about looking at the long range and making sure you are as mobile and pain-free as possible.

[Saranoya]

Originally Posted by SCI-Nurse

What is exactly wrong with your knee? What is the cause?

I sustained a tibial plateau fracture in a fall. It was both multi-fragmented and depressed, so it was a pretty bad break, but up until about three months post-injury, it looked like it was healing nicely.

Then, I started trying to bear weight on my injured leg again, and I developed an infection. I don't know whether the weight-bearing caused the infection. I just know that the infection occurred less than two weeks after my first attempt to walk post-injury.

It took a total of seven and a half months (august-march) to get the infection under control, and my knee has been stuck at its angle pretty much since the start of that. The latest medical opinion (formulated after an arthroscopic arthrolysis cum removal of a ripped-up lateral meniscus, which I had at the end of May) is that there was extensive scarring, most of which has now been removed, but no signs of chronic osteomyelitis, which was a concern because of dark spots on the CT images.

Originally Posted by SCI-Nurse

Did it occur because of spasticity? If so, would it just occur with another surgery or knee replacement?

It occurred because of spasticity only in the sense that the effects of spasticity on my gait have always made me far more likely to fall and break something than the average person . However, most doctors I've spoken to (there are now five of them, one of whom is a CP specialist) believe that my problem is exacerbated by spasticity. They just disagree on how big a part it plays.

Originally Posted by SCI-Nurse

Are you going to a rehab doctor who specializes or atleast knows a lot about CP and to a knee specialist? There are doctors who do only knees and maybe hips and I would consult with one of them and a rehab doctor or CP doctor for this complex situation.

Yes on the CP specialist, yes on the knee specialist who does mostly just knees. I don't know about the consult, these are doctors at two different hospitals, and I'm not entirely sure I could convince them to do this. If I want to switch to a different specialist at the same hospital where my CP specialist is, that's a two- to three-month wait (because generally, all doctors at university hospitals are in high demand), during which time my situation becomes less fixable every day.

One of my biggest problems right now, at least in terms of balance for walking, is that my hip extensors are way too tight. I have to either bend over when I stand, or stand up straight with serious lordosis. I used to be able to keep this tightening/shortening mostly in check, just by thinking really carefully about every step I took (consciously tightening my gluteal muscles, and pulling up my abdominal muscles, which stretched the hip extensors automatically). Now, I'm mostly just sitting all day, and all I have is half an hour of PT five times a week. That may seem like a lot, but it's not nearly enough to counteract the effects of my spasticity, and since I can't correctly perform most of the exercises on my own, I unfortunately can't do much about that.

Originally Posted by Donno

I have to say that being able to get around with relative ease far outweighs the satisfaction of being able to stand and walk with difficulty. At your age, it may prove to be an advantage to get good at wheeling now rather than learning the tricky things like negotiating doors etc. when you get older and have diminished mobility/muscular control.

I actually agree with this 100%. The problem is, I think, that some part of me still thinks that with the right medical approach, whatever that may be, I could potentially still regain everything I've lost since I broke my leg. Which is to say, I might be able to walk again with relative ease.

But after thirteen months, five surgeries and eight hospital stays (for a total of 72 days spent in the hospital since my fall), I guess maybe I should just stop hoping for that. If it comes, great, if it doesn't, well, life in a wheelchair isn't terrible. Except of course when you have to haul yourself up two flights of marble stairs to get on a train, just because the railway company promised they would send someone with a key to the elevator and a mobile ramp, and then didn't. But that's a story for another thread.

[crypticgimp]

unfortunately it seems u may have answered your own question. i think for mobility's sake, use the chair but do try to keep stretching ur legs as much as u can.

[Saranoya]

Originally Posted by crypticgimp

unfortunately it seems u may have answered your own question.

Yes. Problem is, people (including my primary care doc) look at me funny for having 'given up' on walking 'already'. And, when I go to a specialist, I'm given hope every time that with just a little bit of this, or just a little bit of that, I could be back on my feet within a few weeks, or a few months tops.

The truth is that yes, for mobility's sake, the wheelchair is much easier, and much more practical in many situations. But if I'm going to keep hoping for a fix, then I should be using the wheelchair as little as possible.

So should I just stop hoping, and stop going to the doctor, too? Because all he will tell me is that he can fix me, and then when his fix doesn't work, that he can't understand why it doesn't.

[crypticgimp]

Originally Posted by Saranoya

Yes. Problem is, people (including my primary care doc) look at me funny for having 'given up' on walking 'already'. And, when I go to a specialist, I'm given hope every time that with just a little bit of this, or just a little bit of that, I could be back on my feet within a few weeks, or a few months tops.

The truth is that yes, for mobility's sake, the wheelchair is much easier, and much more practical in many situations. But if I'm going to keep hoping for a fix, then I should be using the wheelchair as little as possible.

So should I just stop hoping, and stop going to the doctor, too? Because all he will tell me is that he can fix me, and then when his fix doesn't work, that he can't understand why it doesn't.

honestly, the way you describe how you walk, it sounds painful :/ is there a way to exercise your legs on something like an exercise machine? but use your wheelchair full time? that way you can keep your strength but still not be dependent on walking

[LaMemChose]

Sara, you've answered your own question in this thread's title. You don't want your body to worsen unnnecessarily.

With cerebral palsy, it is common for those of us who once walked to lose that ability (and other functions) as the years pass. It's a type of premature aging. You are not the only one to have ever faced this dilemma. Go for the chair and save the wear and tear on what you are already losing.

I, too, have cp and mine was complicated by SCI in '93. My docs and I are never sure exactly what (cp or SCI) gets the blame for any declines, but my friends with only cp are losing significant ground with each decade. This outpaces any age related declines seen in the general ab population.

Go for the wheels if walking is harming your body. Just take good care of your shoulders as best you can.

Talk to your physiatrist about this. Ask your him/her to explain cp overuse syndrome to you. It may help you better as you come to terms with what's happening in your body and allow you to work with your body, not against it.