2nd, 3rd and 4th Opinions

It was time to take a good hard look at where I was.  I forced myself to take the emotion out of my situation. Yes, I was angry at Dr #4- but that anger wasn't going to help me figure out what to do about my AVN.  I pushed all that anger, and the fear, shame and shock out of my head.  That stuff I would deal with in my NA meetings and by working with my sponsor.  But outside of that, I needed to get a good doctor that respected me and was competent dealing with my diagnosis.  Someone who would present me with all of the options and help me make a decision that was right for me.

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.

The only way out is through

My father and I drove home.  I don't think either of us said much in the car.  We got to my condo and I headed to the patio for a much needed cigarette.  I think I was numb.  When I came back inside, I immediately opened up my laptop and put "avascular necrosis" into Google and began my search.  My father was doing the same thing on his iPhone.  A few minutes later, Dr #3 called and told me to call Dr #4- his office was going to try to get me in that afternoon.  When I called, they actually had an appointment open in just an hour.  I remember then calling to cancel my hair appointment.  It made me very angry to have to do that.  I hadn't had my hair touched since all of this madness started.  I had dark roots and gray hair which certainly wasn't helping my pudgy-faced steroid look.  I hadn't been able to get my hair done because I couldn't sit for that long.  But I finally decided that it was time to do something nice for myself and had made the appointment a few days ago.  Was it symbolic that I now had to cancel?

For 45 minutes, my dad and I quickly received an online education about avascular necrosis, or AVN.  It was not common.  It usually affected men more than women.  Known causes are excessive alcohol intake, and long-term high-dose steroid use.  About 35% of cases are idiopathic- no known cause.  I was a drug addict, but I did not have excessive alcohol intake, and the steroids I had over the past few months, while it was a lot, wasn't long-term or high dose.  As far as treatments- well there weren't much.  AVN turns out to be a very challenging disease because there is no medical management, and the surgical interventions vary greatly in their success rates.  There is core decompression, bone resurfacing, bone grafting (transplant)... The only "successful" treatment is a total hip replacement (THR).  "Successful" because it removes the dead bone completely and replaces the joint with a prosthesis.  But even that doesn't fix the problem for good, because the materials used for THRs wear out over time.  The younger you are, theoretically, the more revisions you will need.  The less impact you put on the artificial hips, the longer they last.  So depending on how long you want your new hips to last, your high impact activity may be limited.

An hour later we were in Dr #4's office.  He was loud and a bit arrogant.  But it didn't bother me.  My dad was a surgeon, and I had worked with this personality for years.  I was actually quite impressed with the time he spent with us.  He explained that my MRI showed that my left hip had about 35-40% necrosis and the right side had 30-35%- both of which are pretty large lesions.  The regular x-rays showed that the femoral heads were still the correct shape- rounded.  When the necrosis gets bad enough, the bone will eventually collapse, which will cause more pain and difficulty with range of motion and weight bearing.  Once the bone collapses, the only choice is to do a THR.  The choice about other treatments- to avoid or postpone the need for THR- is the controversial one. In his opinion, none of the other interventions had a good enough success rate to justify trying.  Basically, his thought was that when the pain got unbearable, the best option would be to do the THR.  At this time, this made sense to me.

Dr #4 was concerned about a number of things.  First, I was a mess in his office.  I was crying and very emotional.  I had already been depressed, this certainly didn't help my outlook at this point.  He observed this and said that I needed time to let this all sink in and get emotionally prepared for the surgery and recovery.  I was a little bit embarrassed- yes I was pretty shaken up.  But I am not by any means a weak person in general.  At this moment in time, I appeared to be falling apart.  I remember him doing something that was pretty powerful- he grabbed hold of my hands and looked me in the eyes and said "Look- this isn't cancer and it isn't a massive heart attack.  You won't die from this.  And young patients with THRs live as full a life as they did before the surgery."

Second, the pain issues.  I was still having sciatica pain.  He was concerned that if I had this after surgery, it might negatively affect my recovery and make physical therapy difficult.  Third, he knew that I had back surgery just a month and a half ago and said it would be better to wait a bit before jumping into another surgery so soon.  Fourth, my smoking.  It was absolutely imperative that I quit.  Nicotine constricts blood vessels.  It could be speculated that my 20+ years of smoking contributed to the AVN- by repeatedly constricting my blood vessels, it could have affected the blood supply to my hips.  But more importantly, good healing needs good blood flow- especially when my bone will need to heal well around the implants.  In addition to the healing aspect, there are other concerns with my lungs and anesthesia, and the formation of blood clots.

He wanted to see me in another 6 weeks, with the goals to be that in this time period, my sciatica would be improved, I would be mentally prepared to go forward with surgery, and that I would quit smoking.  I felt this was all reasonable and made good sense.

Driving home, I felt absolutely exhausted.  It was so much new information.  I was scared.  I was worried.  All I wanted to do was smoke a pack of cigarettes.  Quitting smoking seemed almost impossible.  I was overwhelmed by all of these emotions.  I had these horrible visions of me being grossly overweight and wheelchair bound and living in a trailer with a dozen cats on a disability income.  Which was totally ridiculous.  I went home and got in bed.  I didn't really talk to anyone for a few days.  I needed to cry and yell and throw things.  I needed to go through the emotions.  It was sort of like Elisabeth Kubler Ross's stages of grief.  This wasn't easy for me.  I am a drug addict.  For years, I coped with uncomfortable feelings by taking drugs to mask them.  I numbed out.  That wasn't an option for me anymore.  I had to reach down deep, and use the coping mechanisms I had learned since becoming clean.  This was the hardest thing I had gone through since then, and it was going to be a hell of a challenge.

Dead bone

My father had come with me today to see Dr #3.  It was a few days before my 44th birthday.  I was getting the results of my follow-up MRIs- of my lumbar spine and of my pelvis.  The pelvis MRI was done just in case we had missed something and the pain that I was still experiencing after surgery was coming from some other place besides my spine.


The doctor told me that my spine looked fine and that the surgical area was healing as it should be- there was no re-herniation of the disc.  But the MRI of my pelvis as not normal.  He held up the actual MRI to the viewing box and pointed to some white-ish areas in the heads of both femurs- the "ball" of the ball and socket hip joint.  He said that these areas were basically dead bone- that I had "bilateral (both sides) avascular (no blood supply) necrosis (dead bone)."  I knew that this was bad.  I was a nurse.  Any time you have dead bone it's bad.  And when it is in the most weight bearing joint of your body, it's really bad.  I am pretty sure that I went pale as the blood drained out of my face.  I know that the room suddenly looked weird to me- as if I were watching myself.  I remember looking at my father, who's stunned face matched how I felt inside.  It all made horrible sense to me now- why I had pain still, why it was in my hip, why the surgery didn't help...It's ironic how getting news like this, while devastating, also brings relief.  Relief that there was a reason, a medical diagnosis, a significant medical diagnosis, that was causing my pain.  It wasn't in my head.  I wasn't crazy.  The pain I felt was real.


I am a nurse.  And I knew what the diagnosis meant, medically.  I had taken care of many people with hip dislocations, and understood that these patients needed their hips reduced (put back into joint) in a timely matter.  Otherwise the blood supply to the bones would be impaired and cause bone death- avascular necrosis.  But I was an ER nurse and that was the extent of my knowledge about the diagnosis.  The only thing I remember, sitting in that office, was knowing enough to ask the doctor "I am going to lose my hips, aren't I?"  He looked down, and then sort of shrugged and said "Maybe."  


I don't remember too much more of what we talked about, except that this was something we had to deal with right away.  He wanted me to see a hip specialist the next day.  His partner was one, but was on vacation for another two weeks.  So he told me that he was going to call another, we'll call him Dr #4, and try to get me an appointment as soon as possible.  We also discussed pain management.  At this point, even before the bad news, I was getting worried about the pain and amount of percocet I was still needing.  I was now taking a number of powerful medications that were all prescribed by different doctors.  I wanted one doctor to oversee all of these medications, and make sure what I was taking was safe, especially given my addiction history.  I was not going to be a martyr and forego pain medicine, but I wanted to do it in the safest way possible, with a doctor who understood addiction.  Dr #3 gave me the name of someone he trusted.


I remember us joking a little bit as we left.  This doctor was, and had been, very kind.  I could tell he was extremely sympathetic to my situation and to the pain I was in.  The laughter we shared was about the fact that we knew he was relieved that I was no longer his "problem patient."  He said that as soon as they got in touch with the hip doctor, they would call me.


As we exited the doctor's office building, I looked up at the sky and said aloud "Thanks a lot.  Like you haven't thrown enough crap at me already."  There were tears now.  And I was scared.  I am usually pretty good at accepting what I cannot control these days.  But on that day, I had had it and frankly I was pissed off at my higher power.  You know that saying "Whatever doesn't kill you makes you stronger?"  I was (still am) SO sick of hearing that!  (Thank you very much, Kelly Clarkson, for putting the phrase I hate the most to music that has topped the charts, by the way...)  I am as strong as I want to be right now.  But what I want and what I get are two very different things.   There are things in my life that happened to me because of my poor choices, I accept that.  And then there are things that happen, that simply JUST HAPPEN.  It makes no sense to me right now, I can't see a reason for it, or find my part in it.  But I have faith that someday I will have a better understanding.  I will be able to appreciate this experience.  There will be gifts in all of this.  It may not be clear to me now, but I have faith that it will be revealed to me when I am ready to hear it.


But that day, I was pissed off, scared, and anxious about what was to come.