4/12/2010 04:07:00 pm BenefitScroungingScum 8 Comments

When I'm deathwalking and it really hurts, really really hurts, my mind is so clear ideas swirl and coalesce in perfection. Back home without such pain I lose them. I'd put something witty but I forgot that too, though it was definitely there waiting to be typed when the pain was most.

I never did go for that hip x-ray. After waiting a few days resting it seemed pointless, like most of the injuries Ehlers Danlos Syndrome causes the damage is to the soft tissue rather than the bones and doesn't show on x-ray. Having had many x-rays and doubtless more to come in my future I like to avoid them if at all possible. This time it has been possible, although I may need to have a scan at some point.

My hip is more unstable than it was before. After discussing things with my physiotherapist, J I am fairly sure I have torn the acetabular labrum in a posterior position. Usually my hip dislocates out to the side when I weight bear, but since the kerb step fail moment it's been dislocating out to the side before swinging back and dislocating. It feels like trying to walk on a femur locked into a permanent figure of eight movement. Tricky.

Next week I'm booked in for an hour and a half of physiotherapy. I'm not even thinking about the cost, it's pointless. The appointment is so lengthy because we plan to do various assessments so that a longer term rehab program can be worked out. Then I'll go for monthly physio appointments and work at the exercises myself. Much has been learnt in the past 5 years about physiotherapy for hypermobile people and how important 'brain retraining' is for bendies. The problems with proprioception experienced by hypermobile people are thought to be because of the additional joint movement. The joint is able to extend far beyond normal range and unlikely to be able to stay in a fixed position once it's there. This means the signals sent between muscles and brain can never get a true fix on the actual position of the joint, let alone the relative positions between body and inanimate objects. In practice this means many people with Ehlers Danlos Syndrome have comedy moment accidents. I've had to go to A&E and explain that yes, I really did walk face first into a lamp post, stone cold sober and yes, I really did swim face first into a wall.

There are reasons I put myself through all this torture. Various people have wondered why I don't have a power wheelchair. There are many reasons for that too, but even if I did have a suitable wheelchair or scooter I'd still go deathwalking. Using a wheelchair full time would mean my already weakened muscles and ligaments would weaken further, faster. The end result of that would be that I might have less hip dislocations from being on my feet, but I'd have more hip dislocations whilst sitting down. Having experienced both situations I'll put myself through any amount of deathwalking to stay on my feet part time. It may be a nightmare, but it's far less of a nightmare than the alternative. I also need to consider the fact that at some point in the future I will need bilateral hip replacements. The fear of repeatedly dislocating artificial hips keeps me awake nights. A long term physiotherapy program is the best chance I have of staying physically strong enough to enjoy life.

It's just a shame that kind of specialist physiotherapy or wheelchair provision isn't available on the NHS.


Anonymous said...

Interesting thought on proprioception, makes a lot of sense really.

And as for the wheelchair perspective, I agree completely. Do what it takes to keep as strong as possible, for your own benefit. Any ruminations on yoga at all? Might be good for strengthening joint supporting tissues (ignoring the suppleness part, you probably have enough of that)

alhi said...

Thanks for the comment.

Why would you need bilateral hip replacement? Does the constant dislocating ruin the ball and socket joint? I don't know how you would manage with the risk of dislocation; I was told that if it happened they gave it three strikes and then replaced the replacement. Seeing as you relocate your hips so much I wonder if you would be able to relocate the replaced joint?

Alhi: Yep, that's exactly it. Eventually the osteoarthritis will become so severe I'll have to make the decision, but I'm hoping joint replacement has advanced enough by then to make things easier. My worry is not having the supporting muscle tissue to keep a replacement in its socket...which would be ok if I can relocate the replacement easily myself but I doubt it'll be that straightforward.

Anon: Hello & thanks for your comment! I personally find stretching through my full ROM helpful but many avoid it for various reasons. Yoga works for some but the focus is too much on stretching. Pilates is recommended for hypermobile ppl as it focuses more on strengthening.
I suspect the next decade will see huge advances in this kind of specialised physiotherapy as it's the same process in rehabbing after a stroke.

madsadgirl said...

I can fully understand why you would want to keep walking, albeit painfully, for as long as possible. Your comment about the kind of specialist physiotherapy that you require not being available on the NHS is another example, I believe, of where the money is being spent in the wrong areas. There are just too many managers and not enough people with the specialist skills that people such as yourself require and this is something that should be dealt with urgently. I have serious concerns about money being spent on expensive drugs for one or two people when that money could be spent on specialist services that would benefit tens or even hundreds of people. I know that this is a very emotive subject, but we have to accept that the money just isn't there to be able to provide for everybody's needs. Whether we like it or not, the difficult decisions need to be made in favour of the majority rather than the minority. And I believe that specialist services such as that which you require are more important than possibly prolonging the life of a few cancer patients for a few months.

Madison Rose said...

Fascinating post, particularly the bit about proprioception. I thought you might like to see this:

MadisonRose: Thanks for that image, I did like it very much. It's going round twitter now but I'll try to remember to put it in a post on here and credit you x

Madasagirl: Absolutely beautifully put, thank you my dear x

Unknown said...

Interesting stuff on the hip labral tear. A few years ago, I did 'something' to my hip that I now suspect was a labral tear after a day of repeated subluxes. I'd spent the day moving from crouching to standing over and over and my hip clunks a lot through that movement.

The docs X-rayed, said nothing was wrong and referred me for physio a few months later when I was still having a lot of problems. By that stage I was having massive back issues (possibly from walking on a wonky hip for months?) and that was what the physio actually worked on.

It took nearly two years before anyone (Prof G in London, actually) suggested a scan on the hip to investigate the possibility of a labral tear. Nothing showed up - imagine that! He thought it was a long-shot due to the time it had been since it all started. The description in that article is exactly the kind of pain I was getting. I still don't have 'normal' ROM in that hip, but it's a lot better than it was and the physios that I've seen all consider it normal even though there's a significant reduction in ROM compared to the other hip.

I've just started an into to yoga course with an instructor who is familar with hypermobility and wants to concentrate on strengthening rather than stretching, so I'll see how that goes :-D

All of that was a long-winded way of saying thank you for the update on your hip and the next time my hip does this, I'll have something to point the doctors and physios towards!

misspiggy said...

This isn't going to be of much help, but I just wanted to say that if you or other bendies ever end up anywhere near the Whittington Hospital in north London, their fantastic physiotherapy team (at least the two most senior ladies) do provide pretty good physio support. They have worked a lot of it out on their own as far as I can tell, and made huge efforts to get me physio sessions for much longer than my officially alloted period. Also bent over backwards to move and shake support services within the rest of the hospital trust. Completely transformed my life, and actually treated me and my circumstances rather than going by their expectations. I wish there were more like them!