I've got a long history of knee cap dislocations with my right knee, starting in childhood. I've always been able to reduce it myself, although it has sometimes taken quite some time and effort
Last year, approaching 38, things changed from just the normal instability, bouts of "pain for no apparent reason", and occasional periods of small, dense swelling, to having significant problems with the knee trying to bend sideways (outward) on me, especially when stepping down. Then there was onset of a huuuuuuuge amount of swelling (well, huge for me - for whatever reason, I don't generally swell much including after arthroscopic surgery, so any swelling is a big deal) and major pain, plus pronounced loss of range of motion, and massive difficulty descending stairs and slopes.
As I'm already treated at RNHRD in Bath, they investigated this and found moderate patello-femoral arthritis. Although the arthritis pain and swelling has reduced, and the knee has stopped trying to go out sideways on me, it remains a problem with different kinds of instability (eg a new kind of - well, who knows? I call it a dislocation because it generally occurs in the pool, limits the motion of the knee and when I can achieve a marked shift of the bones in relation to each other, it fixes it... but I don't actually know what my terminology should be for it
), more pain than there used to be, improved compared to last year but still reduced range of motion, and pain going down slopes. It can also be d**n difficult to get up from chairs, because this is the leg I've had to rely on since the left one got a bit lazy after salvage surgery to sort out a louse up of a first scoliosis surgery, so it's far from unknown for me to make all the motions of getting up and fail to move
or to get halfway and have to give up and crash back down.
Sooooooooo. To the point of this - I've got an Open University field course coming up. Although they will provide me with an assistant to carry my bags, carry a folding chair for me and help me up from said chair, and obviously I'll just painkiller to heck and as long as I scrape a pass I'll be happy, I find myself with considerably greater trepidation about how I'll deal with it than I did with last year's course. I'm not due to be seen at RNHRD until after I return from the course, and I doubt that I could get in to OT before then anyway even if they agreed a knee brace would be a good idea. What I'd like is any perspectives you guys can offer.
My previous experience of knee braces is that your standard neoprene things don't work. Despite the HMS/EDS, I've clearly inherited the muscular gene from my dad, and that combined with a lot of long distance walking, and a few years of body building mean that although I've got fairly small knee joints (not so much so with the perpetual low grade swelling now mind you) I have still got quite muscular legs. A standard stretchy knee brace just rolls up from the bottom, down from the top, and tries to cut off blood supply by pinching at the back of the knee fold. The mis-positioned nature of my kneecaps also makes them difficult to place, whether they have a patella cut out or not. I can't actually put these on any more in any case, as the arthritic pain in my hands and wrists, and the instability of joints there, is now too marked for me to pull on something like that.
In respect of tubigrip, again the same sort of problem - what has worked in the past has been to put a single layer of tubigrip from at least halfway up my thigh down to the bottom of the gastroc muscle, and then put a double layer of highly compressive tubigrip over the knee itself, cut slightly longer than your typical knee brace. The fact it can grip onto the long single layer of tubigrip seems to prevent it rolling. However, there are various reasons this isn't likely to be sufficient for the degree of support I would ideally like to have.
What I'm left wondering about is an open framed, hinged knee support. Of course, these are cripplingly expensive - and I don't know if any of them would actually fit without trying them. Is there anywhere that any of you know of that have a good returns policy, so that the item can be tried on and returned if it doesn't fit? Anywhere that has them at good prices? Any other suggestions on how to manage - I use crutches because of flatback syndrome (due to the aforementioned scoliosis surgeries) so these help a great deal with the rough and uneven ground I'll be dealing with, but I'm definitely open to any suggestions.
If you got this far, thank you
and thanks in advance for any help