There Are Dozens Of Us!

 

 

When I was first diagnosed with Congenital Hip Dysplasia, I did not understand any of the medical jargon coming out of the surgeon-fellow's mouth. He did have a thick accent, but still: I'm a nurse and I had no idea that hip issues beyond: it's arthritic, you should probably get a new one, even existed. Like any health professional, I turned to Wikipedia and Google for answers. It seemed that most people with hip dysplasia were babies in severe looking straps and contraptions, dogs, or patients taking part of a British study conducted in the 1970s. As I am neither an elderly Brit, a dog nor a baby, I'll give a fairly untechnical run-down on what this condition is. Join me! Let's get hip to dysplasia!

 

My symptoms started manifesting with continuous pain in my left hip joint that radiated into the groin that didn't get better with ice, heat, or physio. It's a dull, always-there pain that occasionally gives me intense jolts of sharp pain if I'm doing too much, or just for fun. My hip also makes a sound particular to my condition: a "clunk." And yes, "clunk" is what the Ortho surgeons say. It's louder than a cracking or popping joint; it sounds like bones are shifting around in there. When I clunk, elderly deaf patients look up in disgust, physios say "That isn't a good sound," and Dan will shout out "Ooh, good one!" from the next room. The last symptom I developed was a limp that's especially pronounced when I'm fatigued.

 

To review, our symptoms are: non-specific pain, clunk, limp. I'm not a doctor, but that doesn't scream "Diagnose Me!"

 

So I had X-rays, about four ultrasounds, and an MRI, and all that had been diagnosed was a cyst possibly from a labral tear. When Dr. Johnston saw me he did X-rays where I pointed my feet in funny angles. One of the angles they measure in your hip is supposed to be at 25 degrees. My bad hip was below 20 degrees and the right hip was hanging in there at 21 degrees. Basically, the head of the femur (the ball) doesn't fit into the acetabulum (the socket) very nicely.

A a normal hip is pictured on the left, and a gimpy hip on the right. See how that isn't a very good joint connection? There's some roominess around the head of the femur, and the socket is fairly shallow and open? When the joint is aligned like that it kinda runs like a bike or a car with a flat tire: it doesn't glide smoothly but "kA-chunks" and the labrum and cartilage get chewed up. That's why I have a cyst. Eventually the cartilage gets worn right out and bone rubs on bone with every step. That's why my hip hurts and why I have some Osteoarthritis. Eventually the joint gets so arthritic that a hip replacement is needed, or you stay lame. Some websites state that lameness is a viable treatment alternative. I disagree.

So why don't they just replace the joint? It's a way faster, easier surgery. The thing is, I'm young, so I'd probably burn through at least three fake hips in my lifetime. The theory is that by preserving your joint, you're possibly preventing the need for a joint replacement. I do have a genetic predisposition to arthritis (thanks Mom!) but after my surgery, a hip replacement will be a breeze. I mean, I'll have a walker and a raised toilet seat already. That's also why I need to get my other hip done in a year's time. It isn't painful now, but eventually the joint will wear down and I'll be lame all over again.

Naturally, your next question is: what is my surgery all about? It's called a triple periacetabular osteotomy (or PAO). It's a long surgery - a whole day of OR time, which is why Dr. Johnston can do only one a month. He will open me up from above the hip bone down into the groin and break my acetabulum in three places. The joint is basically remodeled under X-ray so every thing is correctly aligned. Then the acetabulum is pinned together with three monster screws. Next, they will reattach all those nerves and muscles they had to cut out of the way and staple me back up. (Side note: that's why pre-physio is discouraged: more muscle to cut through. Ew). (Second side note: since it's a rare and crazy surgery, people like to watch for fun and learning. Extra ew).

Dr. Johnston likes to remove the screws after a year. If the cyst I have doesn't naturally heal after the joint is working properly, Dr. Johnston will just scope it out. Day surgery, no problem!

My mom really wants everyone to know that she wasn't a negligent mother: I was screened for dysplasia as a babe. However our current screening method isn't 100% effective. According to a Swiss study the only super effective way to screen for this condition is via ultrasound. When babies are diagnosed they are either put in boards, swaddled tight or have a PAO. But since baby cartilage is pretty flexible, the hip will often splay again, so some people end up having multiple PAO surgeries as babies and adults.

There are only dozens of us. Hopefully with that rundown you can understand the condition and procedure a little more clearly. I feel very un-academic for not citing my sources, but I found this to be a great website:
http://hipdysplasia.org/