Thursday, June 18, 2015

My head is about to explode

That's the number of times Baby Queen's kneecap has dislocated.
That's the number of days.
I've had to deal with this probably at least 20 times over the years, but 5 in 3 is too much.

I'm at my wit's end. She's gained an incredible amount of weight from the meds, and the weight is putting excessive strain on an already unstable joint. We took her to the orthopedic surgeon the first time it happened almost 4 years ago, and was told that the cup created by the bones of her legs was more like a saucer. Rather than the patella being cupped and hard to push out, it's like a freaking hockey puck on a frozen plate. Every little stress sends it out of place. The only way to correct it is to replace the joint. Not bloody happening. So the weight makes it more unstable and painful, the instability and pain makes exercise painful and risky, and it's a horrible spiral.

When it goes out, she screams in agony, shakes, tries to protect it, pushes my hands away. And I have to hurt her to help her. I feel nauseous every time I have to do it. But I do it. Within minutes of it going back, she's up and walking around, giggling like nothing happened and I'm shaking and in need of a stiff drink.

I just need to figure out how to make this work for her.
The right brace (got two worthless ones prescribed by the dr. that don't fit and end up as ankle bracelets.)

This one has adjustable velcro straps, side hinges, patella support and an open back. Maybe it'll stay where it needs to stay.

The right exercises (looking into water therapy and physical therapy).  I've been checking out the outlying areas, and it would actually be cheaper for us to get a swim-spa in the backyard. Between the 60-80 minute round trip, the dues, the therapist fees, we could pay for one of these in two years:

I'm exploring all options, but I've got to figure out some immediate answers. Seeing my baby in fear and pain is really starting to wear on me. And I imagine, it's not much fun for her either.


Able said...

Patella dislocation is so much 'fun' isn't it?

I was shot in the leg (Queen and country and all that) and it 'popped' my whole joint (patella dislocation and a subluxation of my proximal tibiofibula joint – owee!) and once it's happened … er, once it's prone to happening again due to a stretching/weakening of the surrounding muscles and ligaments.

My experience is that a simple hyperextension (rather than any manipulation) relaxes the surrounding muscles and it just 'pops' back in on its own (my new party trick – Here hold my beer!).

Not quite sure what your docs are on about with 'cups' (a shallow femoral trochlear groove? Not so much a cup'n'saucer as a slide and frame issue) but apparently hypermobile joints and those with acute Q-angles are more prone too. Those with 'looser' ligaments (predominantly girls) and those with 'muscle imbalances' (as found with cerebral palsy and Downs sufferers but hardly exclusively) are also major causes (both of the initial incidence and the recurrences). For the rest of us it's that old stand-by – trauma.

Also not sure why they are waffling on about a (TKR) joint replacement when the 'normal' surgical procedure is to reconstruct the patellofemoral ligament with a donor tendon/ligament, even cartilage damage (loose 'bodies' in the joint or damage to the anterior face of the patella) is usually repaired arthroscopically (a joint would normally only be replaced in extremis, as an absolute last resort should the damage, usually due to years/decades of the resultant arthritis, be so severe as to offer no alternative).

First-line treatment is 'always' physiotherapy to strengthen the supporting muscles (especially the VMO muscle – there are lots of specific, easy and cheap, exercises out there for that like
– don't ask about my pliĆ©, and no, I don't wear a tutu – well except for parties).

Me? I ended up (thankfully) with a decent Consultant and Physio so was supplied with the full DonJoy kit

I still wear a J when exercising and running – just in case.

So? I'm definitely no expert but .. I’d say:

Get a second orthopaedic opinion (particularly with paeds/young-adult and sports experience – the majority are geriatric/arthritis fixated – seriously).
Get a decent Physio opinion (it's predominantly a physio, rather than medical, managed condition so their opinion should be weighted by that fact) .
Try some of the exercises (they'll address some of any muscle imbalance/weakness and if you can't afford the pool, cycling is one of the better/recommended exercises, so maybe a mid-level static cycle in front of the TV – two birds with one stone?).

And if you feel you need a brace, I like my DonJoy J (they seem to have hundreds of others too. Not cheap but – you get what you pay for – and no, I have no contact with the company, but should they wish to send me some cash ...), but your physio should be able to (unofficially) recommend alternatives surely?

Just sayin' (my apocryphal medic/nurse based two pennerth worth) – best of luck.

Anonymous said...

My brother-in-law lost over a hundred pounds in a little over a year on a ketogenic diet. He was in a motorcycle accident years ago and messed his back up badly so working out was very difficult. He gained a bunch of weight over the years and no diet seemed to work for him until he tried the ketogenic one and then the weight fell off without much in the way of workouts. It's not a short term solution to her problem, but maybe it might help over time? Hope she gets better soon.

wirecutter said...

What Able said. And the Liquor Barn is having a sale on Jack Daniels this weekend.

wirecutter said...

At least I think what Able said.

DoubleTroubleTwo said...

Hope you can figure something out for baby Queen and your own sanity chickie.. Hugs :-)

Volfram said...

My knee has been dislocated twice. Popped right back in both times. One of the most painful things I've ever experienced.

Maybe get her one of these: (or don't, it'd probably be more expensive than a knee replacement)

Anonymous said...

braces stretch out after awhile.. when they do you could try and find the wide ace wraps 6-8 inches wide or wider if you can find them.. then just wrap it right over the top of the brace.. i have been trying to find some myself they used to have ones that were padded too..
just a idea in case you need it till something better can be found...

livin to ride

Anonymous said...

I agree with Able. A physiotherapist is the only way to go with something like this. (Avoid at all costs: stupid gym trainers, who know NOTHING about biomechanics).

I also had a dislocating patella, due to extra weight and diminished muscle mass. BOTH sides of the leg need to be developed - the harder one to get at is the back biceps, but a balance is necessary.

The losing weight thing, due to drugs, may not be an option for your daughter, but muscle development can be. If she is willing to do stuff when ordered to.

Careful quad development, involving a specific kind of leg press (with a ball between the knees to keep the knees steady - this is critical when starting out). The back biceps is harder. But my therapist had me sit on a stool, when seated, knees bent at about 90 degrees. THEN he had me pull myself around his therapy room (fully carpeted! That is critical) using my legs, with my hands gripping the seat of the stool. This means 'walking' forward. MUCH, MUCH harder than you would think! But it will develop the back bicep faster than nearly anything, and it is 'safe'.

I haven't (knock on wood) had a patella dislocation for over 4 years now, but I am careful to keep these legs well muscled. Harder and harder with advanced age... I hope you can get your Baby Queen to comply. It will be so much better for her not being scared to move her leg.

I don't comment, usually, but I stop in and look at the blog a couple of times a week. I wish you well, and realize that your 'job' is not an easy one. No level playing field, anywhere...