Micro-Movement Blues

The pain started again three weeks ago.  It was familair…but not in the oncoming flare familiar sort of way.  No fevers. No hot swollen joints.  Just really bad pain in her left hip.  It reminded me of the days that led us to the surgeon almost five years ago.  Back then, she was experiencing her first dance with remission – and then she started being unable to sleep because of this pain.  It was so exasperating.  I know that sounds terrible and selfish… but it was. The surgeon told us then that her hips were crumbling from the inside – she had avascular necrosis.  It wasn’t a matter of if she would need surgery, but when.  He told us that the longer we could wait, the better…. and that when she was no longer able to walk, we would need to proceed.

Two and a half years ago was the first surgery – replacing the left hip that was completely collapsing.  At the time, I researched the surgery as much as possible… and there were some fairly large outstanding questions.  Primarily…. how long would the implant last in a child that was still growing?  There’s not a lot of data for us to refer to.  Even though Caitlin’s surgeon specializes in pediatric surgery, she was his youngest patient.  I called the Hospital for Special Surgery in New York – as they too specialize in this.  At the time, the doctor told me that he had patients who had undergone replacement at 12, and were still doing fine at 18.  Caitlin was 11.

So, we knew that she would need a revision at some point.  We just didn’t know when.  And after so many years of stunted growth from inflammation and medications, I really did not expect or fear that my daughter was going to sprout up all of a sudden.  She’s 5’2″ now, which is somehwat a miracle after all of the years below zero on the growth chart.  So, pathetically, I sort of imagined that Caitlin would need a revision when she was 18 or 19.  As if, all of a sudden, after high school… a bell would ring signaling that she had reached her maximum growth potential… and then, without necessary endurance of chronic pain – she would just have revision surgery.  And because this is five or six years in the future, of course they will have developed the most AMAZING technology for implants – that will never have a recall…. and will last the rest of her life without complications.  She would recover from the surgery in a matter of weeks, and head to college with the trauma of the arthritis and it’s effects relegated to history.  That seems fair to me.  That didn’t seem too much to hope for, right?  Admittedly, I have chosen not to spend a lot of time playing out the potentially bad scenarios of how this might all go down.  When I hear stories of implants “failing”, my mind sort of shuts like a steel trap and there is forced redirection to the land of happiness and rainbows… denial at its finest.  Or if you prefer this quote from Michael J Fox

“If you fixate on the worst case scenario and it happens, you’ve lived it twice”.  I don’t want to live that kind of pain for my daughter again.

Since Catlin had her first surgery in August of 2009, she has grown eight inches.  When she had that surgery, she weighed 80 lbs.  She’s just shy of 100 now.  She has hips.  She is developing… and when you look at her, you see the young woman more than you see the little girl.

The surgeon took x-rays and compared them to the set from one year ago.  There is a faint white halo around the hip “cup” implant (the acetabulum).  It’s hard to tell he says – but it looks like micro-movement.  He didn’t seem particularly concerned – and asked us to try two weeks of naprosyn to eradicate any other inflammation.  But he mentioned that if things are loosening, she may require “a little surgery”.  Caitlin’s head snapped up at hearing this news – and her face was white. “But let’s not get ahead of ourselves”, he cautioned, “one step at a time.”

Two weeks later – everything is still the same.  The pain was bad enough to keep her up several nights and home from school twice.  She started taking tramadol at night for the pain. We saw the rheumy and he reported that her arthritis is still quiet, in remission.

So, the surgeon sent us to rule out infection – which required a long syringe into her hip joint under local anesthetic to draw out fluid.  A week later the results are in – and they are clean.  There is no infection.  The surgeon tells me that this is good news – but I wonder if infection is something we can get our hands around without surgery.  “No, infection is bad news…. we’re glad it’s not that.”  Well…. then what are we talking about?

Still not sure…. but it would seem that we are indeed back on that same stupid road from five years ago.  And when I did research to find out more about “revision” in hip replacements in adolescents, what I found was pretty much zip.  Because the original surgery is hardly ever done in kids.  This is such a reminder for me, as if I needed one, that this is an ongoing struggle, with continuing battles…. and no cure. It’s lonely.  And scary.  And completely unacceptable.

But one day at a time, right?  Just get the gloves on and take it one day at a time.

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One Response to Micro-Movement Blues

  1. Caroline says:

    Came across Caitlins story, she sounds amazing, my beautiful 11year old daughter is now heading down the hip replacement journey. Thanks for sharing your story, really helps to not feel sooo isolated ! Take care

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