So I got on the phone. I know plenty of people in the medical field! My parents had friends that had had hip replacements! And my back surgeon (Dr #3) had a partner that was a hip specialist. I had plenty of resources to work with. I made some calls and soon I had a list of 4 doctors that had good recommendations from people I know. I got on the phone and made appointments. One couldn't see me for over a month, so that wasn't going to help much. In the meantime, spent more time online, learning as much as I could about AVN and all the current treatments. When I went to all these doctors for their opinions, I wanted to know enough to at least ask the right questions. I went to each one of them with copies of every MRI and Xray, and the all the radiologist reports. I'll basically summarize what they said:
1. This doctor said he thought that my pain was just from arthritis. He suggested no weight bearing on my left hip and to take anti-inflammatory drugs and the pain would subside in about six months. He actually said "I think you should do nothing- people live with AVN their whole lives without doing anything surgical about it." He did say thought that there was a good chance that my femoral bones would collapse, and then I would need a THR. This just didn't sound right to me. I had done enough research to know that AVN doesn't get better, and there are options to at least explore besides just waiting for my bones to collapse and then being forced into the only option at that point. And what about the pain I was in? What good did taking all the pressure off my left hip, if I had AVN in my right hip as well? Just didn't make sense. I thanked him for his time and left.
2. This doctor basically discussed total hip replacements. He said that he didn't think core decompressions had a good enough success rate, especially with the severity of my lesions. He talked about the minimal approach THR. When I asked about the Free Vascularized Fibular Graft (FVFG), he said it had a better success rate, but good luck finding someone to do it. He did agree that if you had a surgeon trained to do it, it was a reasonable option for someone my age, but he didn't know anyone who did it. He said that a prosthetic hip's life expectancy is directly related to the amount of impact you put on it. He admitted that I would most likely need 2 revisions in my lifetime.
3. This doctor went over all of the options I mentioned above- from doing nothing, all the way up to THR. He explained to me his approach- that the goal of medicine should be to preserve a patient's own body as much as possible. He talked a lot about the FVFG and said that if it works, you have your own body parts with no limitations. He said with artificial hips there are limitations- yes people chose not to abide by them, but that shortens the life of the artificial hip. I asked about the success rate of FVFG and he told me it was quite good, especially for my staging, and told me about the work being done at Duke. He was honest about the long recovery process. He then went on to say that I was lucky because one of the surgeons who trained at Duke when the procedure was being developed in the late 70's was very close- at USC. He gave me his name and number and said go see him- what have you got to lose. He said if I was you, I would be getting the grafts.
I had gotten good information from three different physicians. On one hand I was frustrated by a disease that had such controversial treatment options. AVN was NOT an easy disease to treat. On the other hand, I was grateful to have options available. And I realized that Dr #4's outburst was a gift in disguise. He did me a disservice by how he treated me, and I didn't even realize it til I got all of these other opinions. He did not realistically discuss all of my options. He quickly dismissed them saying they didn't work, rather than explaining them to me and letting me choose. But he is a joint replacement specialist. Most of what he knows revolves around replacing joints. For all I know, maybe he realized this, maybe he felt that he had led me too quickly into a THR and didn't really consider the other options. Maybe his pride got in the way, and instead of just telling me that he should have reviewed other treatment options with me, he had to blame it on me and what I hadn't done. Or maybe it wasn't that complicated- maybe he was just mad that I hadn't quit smoking and simply didn't understand addiction enough to be compassionate about his approach. He was right- I needed to quit. Whatever happened, he was still one of my least favorite people (he really was so mean), but in the end, his freakish behavior turned out to be a very good thing for me.
Regardless, I knew my next step. I called USC and made an appointment with Dr. Milan Stevanovic. I would see him in about two weeks. And in the meantime, it was back to the computer to research everything I could about FVFG.