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.

Surgery (the first one)

By now it was the end of January.  This had all started in November.  I had my appointment with Dr #3- the third back specialist.

I brought my dad to this appointment.  I respect my dad's opinion and I wanted someone else there to ask the right questions and remember what he said.  I explained what had been going on with me since I been injured, and we reviewed my MRI and xrays.  After a good discussion, this doctor felt that the next step should be surgery.  He suggested that he would do a microdiscectomy, to remove the part of the disc pressing on the nerve root.  He agreed that I may have nerve pain that continues for a few months after surgery, but reasoned that I have had pain for such a long time anyway, that it's worth doing.  He would do the surgery at an outpatient surgery center- it was a pretty quick procedure.  I would be walking right afterward and home that night.

I was so happy to be having surgery.  It's not that I wanted to be cut open- don't get me wrong.  But for so long I had been struggling with everyday pain.  The worst part for me was not knowing what would be happening.  I am not a control freak, but I do like to know somewhat what to expect or what will happen.  A lot of people struggle with this, but addicts have an especially tough time with this.  We spend a lot of time and energy trying to manipulate people and things around us, with the false belief this will enable us to control our world.  For the past three months, I had absolutely no control over what was happening to my body.  I had no idea how long it would last, or what would be happening in my life in relation to it all.  So for me, surgery appeared to be (hopefully) the beginning to the end of all of this.  I had faith that this would fix the problem and I would be on the road to recovery and get back to living.

Surgery was February 17.  It went fine.  After the surgery, Dr #3 did tell us that the nerve root looked very red and inflamed, so I should expect to still have pain for a while (possibly 2-6 months!).  When I was able to walk to the bathroom and my pain was somewhat controlled, I was discharged home.  I got a large back brace to wear.  I was told no twisting or bending.  The overall pain wasn't too bad, but certain positions were very painful.  I could not sit up in the beginning- as time went on I was able to sit for longer and longer periods of time.  Sitting to go to the bathroom was the worst.  I used a lot of ice, and took the percocet Dr #3 prescribed when I needed it.  I was still very worried about my using narcotics, and in the beginning I was trying to hold out and not take them.  My family actually had to remind me of the right way to take pain meds: keep a steady level of them in your body, so take them at evenly spaced intervals so you don't get behind the pain and have to play catch up. Things I have told thousands of patients over the years...but I was hesitant.  The last thing I needed was to get hooked on opiates. Slowly but surely the surgical pain went away and I was able to return to the level of activity I was at before the surgery.


Four weeks after surgery, I still had pain.  It was getting better in my lower leg, but I still had pain, bad pain, in my hip and thigh and knee and shooting down the back of my thigh.  I couldn't sit or flex my hip without pain.  It seemed to be activity related- the more I was up on my feet and moving around, the more it hurt.  By the end of the day I the pain was unbearable.  The longer I was flat, the better.  But then I was always falling asleep- because I was laying down most of the time.  And I am one of those people that the percocet seemed to have an opposite effect on in terms of sleep- it wired me! I spent many nights wide awake (good thing I'm a Law and Order fan!).  I tried to get into a daytime "schedule" to at least busy my mind, to give my day some structure.  The internet and my laptop became my best friends.  I started reading again.  I even started knitting scarves. And I am not the knitting type...


At my 4 week post-op appointment, Dr #3 saw how much pain I was in.  I could barely sit (and I had to wait in his waiting room for an hour before seeing him!).  We decided to repeat the back MRI to make sure everything was healing right and that I had not re-herniated the disc.  My dad was with me again, and we both asked the doctor to order an MRI on my pelvis as well.  We wanted to make sure that there wasn't something going on below my back that could be causing the pain.  He agreed.

A week later I had both of the MRI's and another week later I was back in Dr #3's office.  This time my appointment was first one of the day, so we did not have to wait as long to be seen.  I had brought my dad along again,  Good thing I did, because I was about to have my world turned upside down.

Definitions...

"shoot from the hip" Lit. to fire a gun that is held at one's side, beside one's hip. (This increases one's speed in firing a gun but is much less accurate.) When I lived at home on the farm, my father taught me to shoot from the hip. I quickly shot the snake before it bit my horse. I'm glad I learned to shoot from the hip. Fig. to speak directly and frankly. (Alluding to the rapidness of firing a gun from the hip.) John has a tendency to shoot from the hip, but he generally speaks the truth. Don't pay any attention to John. He means no harm. It's just his nature to shoot from the hip. See also: hip, shoot McGraw-Hill Dictionary of American Idioms and Phrasal Verbs. © 2002 by The McGraw-Hill Companies, Inc.

No, this blog is not about shooting techniques...Yes, it is meant to be a direct and frank look into my life, at this particular time.  Why now?  Well I am currently going through some serious medical issues.  And my medical issues involve my hips (ahhhh- the connection!).  Thankfully, they aren't life threatening issues- but they are ones that have had and will continue to have significant impact on my life.  Experiences that will help define me.  They are ones that I never expected, because I have a whole other set of issues that are partly medical as well (and when you learn a little bit more about me, you'll understand what I mean).  What I have been going through has tested me and will continue to challenge me for some time.  I realized that in order to keep my sanity, I need to keep my mind and hands busy.  Idle hands are the devil's playground and dangerous for me.  Also, as I have done research on my specific condition, I have found very little information from people that have a similar diagnosis and have faced similar challenges.  So this blog is self-serving in one sense, but more importantly, I hope will help others who are experiencing like situations. I have never blogged before.  On my bucket list is to write a book.  I have started many times, but been overwhelmed by the thought of writing about my life experiences.  Where I do start?  Where do I finish?  Seems that there is just so much for me to write about that I couldn't narrow it down and focus on just one aspect of it, or one time period... I'll figure that out when I'm ready.  Meanwhile, I thought I'd give this a try.  I'll spend some time catching you up... and then hope to blog concurrently at some point.  I hope you find something of value in this, and are a bit entertained at the same time!