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August 5, 2009 8:22 AM   Subscribe

Health Mystery Solved. I have been given a diagnosis of avascular necrosis. My general practitioner relayed these results to me after she saw my MRI results. On Friday I meet with an orthopedic surgeon. Please help me prepare.

What questions should I be sure to ask? My gp described the damage as 'fairly advanced' or something.
In addition to questions to ask, I would love to hear anecdotal experiences from mefis directly affected by this.

Short of total hip replacement, (THR), what are the cutting edge effective treatments? If THR plays out as the only/necessary option how was your experience?

Since first being told that my pain was unrelated to a muscle strain/tear I feel as good as I have in 18 months. I can't really explain it but, even without the pain management meds I was prescribed, I know walk with a nearly indiscernible limp and actually feel pretty good. I am otherwise healthy and, according to the chart on the wall, I am within 4lbs of my ideal weight.

I am now a 40yo single, straight male with no kids. I have no family in California where I have called home for 22 years. I was medically discharged in 1990 and have been granted coverage at the Veteran's Administration hospital in my community. Without exception, the care I have received there has been kind, thoughtful and genuine.

Help me prepare for my meeting on Friday and for possible outcomes in the near(?) future.

I'll dust off if anyone would like to contact me directly. Thank you.
posted by anonymous to Health & Fitness (5 answers total) 2 users marked this as a favorite
Yahoo groups has a few support groups for this. You might have to search through them to find one that relates best to you. I've learned more about health conditions through online support groups than any other source but you do have to verify whatever someone says with a reputable medical site. People sometimes go for their own theories which aren't backed up by good research so take everything with a grain of salt. That said, people who have a disease or condition are the most motivated to find out all the different treatments or tips to live with it. Best of luck to you!
posted by stray thoughts at 8:57 AM on August 5, 2009

My husband (35 at the time) was dx'd with the same thing 7 years ago. THR was the only (frightening) option. I looked through a number of medical web sites that went over the procedure and recovery, but this one: TotallyHip, while a little cheesy, has some good "real person" advice. Loads of pics, too, if you are into that sort of thing.

Long story short, he wished he'd gotten the surgery sooner, instead of trying to work through the pain. While it is a major surgery, it is also increasingly common. With smaller incisions (quicker healing time) and lighter, stronger artificial joints, the reality of living with a fake hip isn't bad at all.

After working hard for several weeks at a recovery, he was gradually able to resume all prior activities: running his landscape business (in the field, not just from the office), riding his motorcycles and walking without pain.

I don't know what the current atmosphere is like, but can only imagine improvements over the past few years.

Good luck- I know you must be scared, but you're young and strong, which will make recovery that much easier. Just think, if all those "old folks" fall, break their hips, get replacements and keep on going, then so can you!

MeMail with any questions.
posted by soleilMia at 9:19 AM on August 5, 2009

IANAD, but a friend is an orthopedic surgeon who used to specialize in joint replacement so I hear lots of stories. I think he'd tell you that you should seek to have the THR (assuming it's necessary) at the best hospital you can find -- one with a very solid record of success on this particular surgery. (I don't know the VA handles this stuff). Just because it can be done locally doesn't mean it should.
posted by jon1270 at 2:06 PM on August 5, 2009

Just because you feel better, temporarily, doesn't mean much in the longer span of your remaining life. AVR doesn't reverse; once the head of your femur is dead, it stays dead, apparently. If you go on with it in that condition, you set yourself up for various nasty complications, including fractures and infections, which can vastly complicate any kind of prosthetic replacement. Whether you need a THR, or a lesser procedure, where the hip socket is left, essentially, intact, and only the femur head replaced, depends a lot on how much damage has been done to the weight bearing cartilage, and is something you need to take up with your orthopedic surgeon.

Many people who develop AVR, develop it bi-laterally, too. If you haven't yet, consider yourself lucky. I had problems in both legs, for nearly 2 years, when I was finally diagnosed, in 1994. I thought to myself, if I was going to be miserable, and rehab one side, I might as well be more miserable, and rehab both sides at the same time. I had one side done, and the other, a week later. More traumatic than I thought it would be, and a longer recuperation by about 6 weeks than if I had just been doing 1 side at a time. Can't recommend that staging to others.

In 1999, I had a prosthesis fail in a small stumble accident. The narrow neck of the femur pin, under the ceramic ball, sheared, and I went down. I learned later that this is not an uncommon way in which hip prosthesis fail, as the stresses of stumbles and kicking things, reflected back to an artificial hip joint, are much larger than you would think, casually. I also learned that the revision of the joint after such a disconnection depends a lot on how much damage has been done to surrounding tissue. I was fortunate, as I avoided putting weight on the broken joint entirely, in the instant after the failure, but others have told me of much worse outcomes. The revision and rehab was somewhat easier than the original operations, if only because I knew the rehab drill, and still had much of the home care equipment you'll get.

Hip prosthesis do improve, slowly, over time, thanks to improved material science, particularly as regards the adhesives and/or other means of connecting the artificial parts to your remaining bone, and to the match of materials of the ball and (for a THR) mating cup are concerned. Your average weight and fitness level work in your favor, too. Still, you can expect that in 15 to 20 years, you may need a revision of your artificial joint, to replace worn parts. Sooner, if you take up impact generating activities again, or longer, if you respect the hardware.

Bottom line:
  • This is the oldest kind of joint replacement therapy, with earliest successful cases recorded more than 100 years ago
  • 90 year old women get this surgery, and are up walking, a little, 2 days later.
  • If you need it, there is really no choice.
  • You are fortunate to live in a time where good prosthetic devices and procedures exist, because in most of human history up to the last 50 years, your life expectancy would have been 5 years or so, as your dead tissue became a magnet for infection, and your last days would have been seen, at best, from a wheelchair, or bed.

posted by paulsc at 5:04 PM on August 5, 2009

err: AVR = AVN, in my comment above. Brain glitch due to hyperlink, I guess.
posted by paulsc at 5:06 PM on August 5, 2009

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