The Back (Hip?) story

I have had a LOT of surgery, and with that goes a lot of time spent with doctors. Add to that, all my adult work experience (aside from 2 eventful years working at the Gap) has been spent working with or listening to doctors, I thought that I had a pretty good handle on their care and feeding.

Especially on how to talk to them, listen to them, and get them to see what you need.

Until now.

I have a condition, that while somewhat rare, is not unheard of. In your everyday population, avascular necrosis (or osteonecrosis) is an unfortunate but somewhat uncommon problem in active people under 40. Some have lifestyle factors that cause it: steroid use or vigorous physical activity (body builders, pro athletes); some have medical histories that predispose them, including anyone treated with anti-rejection drugs for transplantation. For them, the condition ranges from annoying (have painful hip, get free vascularized fibular graft) to the serious but fixable (have painful hip caused by already-collapsed femoral head, get hip replacement).

For me, this condition means something completely different. For starters, my lack of intact sensation means that when the mild pain started in my hip - back when I had my last spine surgery 10 years ago - it was investigated but brushed off as a consequence of having spine surgery that may have allowed me to regain sensation I didn't have before. The ortho resident said, "we could Girdlestone you if you want, but probably won't really be a big deal for you." That lovely procedure is where they amputate the head of the femur and pin your now headless femur into your hip socket. You might not be able to move your leg in any direction, but at least you have something to sit on. Six years later when I began to have bad leg spasms that kept me up at night, my rehab doc had a brainwave and asked whether I'd had any hip surgery. BINGO. Apparently my body knew what it couldn't tell my brain... pain below a lesion means spasticity, even though you can't feel the pain consciously. It's your body's way of responding to that pain below the lesion.

I saw another rehab doc, Dr. Outdoorsycuteass who said Botox wouldn't work for the spasticity. The hip? "Not important" he said. "You should just ignore it and keep on living your life." Huh. My childhood orthopedic surgeon gave me botox for the spasticity for awhile. Pain got worse, spasticity got worse, and rehab doc #1 (Dr. Amnesia) sent me for injections of cortisone into my hip under fluoroscopy. Two separate times, two highly trained interventional radiologists tried really hard to jockey a very long needle into a very eff'd up joint space. Neither of them made reports about the avascular necrosis clearly evident on the fluoroscopy. The films were never sent to my rehab doc or my family doc. That was four years ago.

Did I mention that avascular necrosis can be treated if caught early?

Three years ago, it was beginning to really cramp my style. I finally got a referral to the complex joint clinic at the big referral hospital here. "He's the best guy in the city for hips." they said. "He'll know what to do." Looking at the fancy new digital x-rays they'd just done of my oft-photographed right hip, his resident apologized for how bad my hip looked. "I'm really sorry. You're not going to like what we have to say." Dr. Bigshotniceguy was affable enough but looked intimidated by my sorry excuse for a hip. "You have a really bad hip - it's called avascular necrosis. Your blood supply to the head of your femur died. The bone has died because of it. It's related to the chronic dislocation, but... we don't deal with people with your kind of... complication." he said. "Your option is a Girdlestone procedure, really, there are some... reasonable outcomes... with that." He nods, looks at his resident. "But I wouldn't even want to bring up hip replacement." Shakes head. "No, that would just be out of the question."

When I asked Resident Of Dr. Bigshotniceguy what that meant, he said "a hip replacement would be next to malpractice if someone recommended it to you. It's so dangerous for you. Not an option."

I'd never even considered that I needed a hip replacement until they'd brought it up.That was three years ago. No other procedures were discussed. No core decompressions, no free vascularized fibular grafts, both of which are done to help your bone regrow inside the femoral head, delaying or removing the need for surgery.

They referred me back to the children's hospital, but not to my previous pediatric orthopedic surgeon. No - to a young hotshot doc who is the only one at this children's hospital who supposedly runs an adult clinic for "people like you with unsalvageable hips."

Unsalvageable?

Where would I have the surgery - if I had surgery? "I don't know... that's a good question. I guess this guy does these procedures at the Children's Hospital."

Ooookay.

Dr. Arsehole proved to live up to his bestowed name. "Your hip is in some of the worst shape I've seen. But I can fix it!" Big smile. "I'll just do a 'salvage procedure,' where we cut the head of your thigh bone off and pin the thigh bone into the socket...'" Upon receiving a dark look: "It's really nothing. You should expect to lose up to 5" of your leg length on that side, but it's really nothing." Pain? "I'm not the person to talk to about that. You want the palliative procedure? Come talk to me. You want help with pain? Go talk to someone else. Most people who come to me with hips as bad as yours are begging me for surgery, like yesterday. I don't know what you're waiting for."

This time last year I suddenly thought I'd broken my hip. I woke up one day and it felt like it had literally broken off inside me. I showed back up at Dr. Arsehole's clinic and his resident, Dr. Hotbritishaccent, sympathized, but felt there weren't many options. "I'm probably a bit more liberal than Dr. Arsehole, so there are these other 'salvage procedures' we could try." I throw up a bit in my mouth as he describes a few ways my bones could be broken, rewired and realigned to approximate a functional body part. All involved huge losses of leg bones and/or huge risks. Hip replacement? "Oooh, no. It's just not done in people in your situation." Why not? "Well, I'm not sure exactly, I think it's because the hip replacement relies on a strong glueal muscle to hold it in from disloacting. You don't have a functioning glueal muscle to do so." Well, how likely is dislocation when you sit all the time? "Hmmm. Well, at any rate, you'd have trouble finding a doc to do that for you."

Finally, out of desperation, I go get some more Botox from Dr. Awesome, my former pediatric orthopedic surgeon. Dr. Awesome was willing to strategize with me. He didn't go in with preconceived notions. He even understood why I was insistent not to have a destructive procedure like a Girdlestone, though he did feel that these options could be viable. "I once worked with a guy with a whole hip arthrodesis (fusion), who ran stairs faster than I did!" Says the marathon running Dr. Awesome.

"But, you know what, they really ought to invent something for people like you. you dont' really need a standard hip prosthesis - you need something constrained. You know what, you should see my brother at the Mayo Clinic. He's done this, he'd be able to help you get it figured out. And so this year when my hip felt like it was breaking even more so than last, I contacted Brother of Dr. Awesome to set up an appointment.

The frustrating thing is, how many times was that hip x-rayed? How many times was it imaged without anyone ever mentioning the AVN that's so clearly obvious on all of the films? Why did none of the docs who read those radiology reports say it? Why didn't the two interventional radiologists, who were right up close to my eff'd up hip for two hours, write it on the report so my docs could know what to say?


And above all, WTF? Why do I keep finding articles recommending that total hip arthroplasty is more favourable to girdlestone, but consistently never find a doctor who seems to know this? All these years after I've learned to handle docs, to make them feel useful and in control but really giving you what you need, and I still can't believe it's possible that I have spoken to every kind of doc about this hip, and they so consistently turn me down for adequate, mainstream treatment that is informed by evidence!? They won't e