, , , , , , , ,

Aspiration Revealed My ASR Device Had Failed While Other Diagnostic Tests Were Still Reading “Normal”

Written by: Cyndi Lafuente

News Story Leaves out Crucial Information

Two news stories published in October, 2011 prompted me to write this post.  The first was an article in the New York Times, written by Barry Meiers, Remedy Is Elusive as Metallic Hips Fail at a Fast Rate.[1]  In this article, mine was a “story within the story.”

However, between the time that Mr. Meiers confirmed my quotes with me and the time of publication, the author deleted the description of the test which ultimately revealed that the device implanted in my hip had failed. 

Now, Mr. Meier’s article is posted to numerous blogs across the internet, and this critical diagnostic information is missing.  One law firm went so far as to render its own interpretation – better said, misinterpretation – of the test, concluded that it had simply been more blood work.

NBC News Story

Second, the NBC Nightly News recently aired a story on the failure of metal-on-metal hip devices.[2]  Within the story, they called specific attention to the recall of the DePuy ASR XL hip device, the one which I had been implanted in December, 2007.  During one part of the story, Dr. Joshua Jacobs said that a person with “pain” or “swelling” around the hip area should see their orthopedic surgeon.  But if you have a DePuy ASR XL hip device and you wait until you have pain or swelling in your hip, have you waited too long?

Or, said another way:  if you are like me and you initially have a normal blood test and then wait for pain and swelling, have you waited to long?

Don’t wait for symptoms

My story suggests those with DePuy ASR XL devices need to be their own advocates.  They should think about a more invasive test, aspiration, to determine whether the hip device has started to fail, even though everything else seems more or less normal.

Immediately following the recall (September, 2010), I saw my surgeon.  He is a good guy.  He answers questions thoroughly, he is never condescending, and he never makes you feel like he is in a hurry to get along to the next patient.

When the blood test came back normal, he said something along the lines of “let’s wait and see what develops.”  But I kept asking questions: I had been experiencing some intermittent discomfort in my groin and what I thought was excessive subluxing.  In addition, I had experienced severe, but unexplained, joint pain in the replacement hip when I hiked on uneven terrain after the original surgery.  The doc prescribed an MRI and a CT scan with differential (September, 2010).  These diagnostics were intended to rule out (1) existing damage from a failed ASR (the CT scan) and (2) referral back pain (the MRI).  These tests came back negative.  The surgeon’s plan was still… “wait and see.”

As many know, the problem is that metallosis can cause permanent damage, starting with the surrounding bone and muscle surrounding the joint.  I was concerned about what could happen to me internally during this “wait and see” period.  Every time I felt discomfort in my groin, I wondered – is this “it?” Is it starting to fail “now?”

I did research online, and found my way to Dr. David Langton, the UK doc who connected the ASR to excessive metal.  He urged me to get my hip aspirated.  As I understand it, the metal shows up first in the synovial fluid, and THEN leaches out into the blood.  Dr. Langton explained to me that UK docs are accustomed to aspiration as a primary diagnostic tool because MRIs and CT scans are so very expensive – under the UK healthcare system, it is very difficult to get an order for such tests approved.  In contrast, U.S. docs order CTs and MRIs routinely, avoiding invasive tests.  Who wants to get a long needle stuck in their hip?

Armed with a long list of questions, I went back to my surgeon (January, 2011).  I never revealed to him that I wanted the aspiration – I wanted it to be the surgeon’s idea.  I figured the surgeon has his own ego and that it would just be better if he initiated the aspiration as his own recommendation.  What doc wants to be second guessed by some researcher in the U.K. that never even met the patient?

At the beginning of the appointment, the doc noted that the experience in the United States thus far had been that ASR XL hip device failures were generally being seen in the first year after implantation.  But after going through my entire list of questions, the surgeon finally suggested that, to give me “peace of mind,” he aspirate the hip and test the synovial fluid.  I immediately agreed and the procedure was done the following week.

The serum was tested at Josh Jacob’s lab — the same doc that was quoted in the NBC story, and the only lab that does this kind of testing.  When I finally got the test results back (late March, 2011 – the machine was broken), the metal count was 1703, which I understood from the doc was 10X the normal level.  I asked my surgeon if the revision could wait until Christmas and he said something along the lines of “no way.”  The revision surgery was performed June 13, 2011.  I am lucky — there was no permanent damage to bone or muscle before the device was removed.  But 4 months later, the recovery is still under way and has been difficult, far worse than after the original surgery.

It should be noted that my surgeon ONLY does hips.  I have heard an estimate that he implanted 400 ASR XLs.  Perhaps that makes him a “leading implanter of ASR XLs” in the United States.  If so, then I guess he might also be, or become, one the leading experts at revisions due to failures.  But it certainly felt to me like my case was a “teaching moment” for him.  In the hospital, I asked him if he modified his protocol (i.e., his diagnostic protocol) for the ASR XL as a result of my case, and his response was something along the lines of “there is lots of new information emerging.”  Mind you, Dr. Langton had told me 6 months before that the data was showing ASR XLs were failing at something along the lines of 49% within 80 months of implantation.

Mr. Meiers could have done a great public service by leaving the description of my aspiration in his article.  And Dr. Jacobs may have perpetuated that initial “wait and see” perspective of my surgeon when, on that NBC news broadcast, he told all metal-on-metal patients to see their docs if they have “pain” or “swelling.” 

But the good news is you are reading this so Hey!  If you have an ASR XL, talk to your doc even if you are asymptomatic.

Come up with a game plan that makes sense and keeps you from getting permanent damage.  Maybe the right thing is to be aspirated once a year, even if just to give you the same peace of mind that my doc gave me.

And if your doc is a jerk, go to a different doc.  Trust me.  Find someone who knows what they are doing and change docs.  The doc who implanted you with an ASR XL may have only done a couple of these, and it just won’t be worth his time to stay up to date on new developments as this thing unfolds.  Your hip deserves someone better.

So, the long and short of it is this — asymptomatic ASR XL patients:  you need to be especially alert to changes in your body.  Be your own advocate and consult with your doc about aspiration.