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Hello Earl

The following is an account of my personal experience with osteoarthritis, our healthcare system, and the Birmingham Hip Resurfacing device.  All representations made herein are my opinion.

MY BACKGROUND: “IT HAPPENS”

I am a 39 year old, single mom of two who endured a divorce, a criminal prosecution against my ex-husband, the loss of my mother to sudden illness, the foreclosure of my home, and a LBHR (resurfacing) surgery in 2008.  While this was all happening, I attended law school and graduated in 2010. In hindsight, it’s amazing I actually made it through school.  There were 75 in our class when I started and only 25 graduates. In 2011, I made an attempt at passing the California bar but I did not pass. I do hope to try again, as I am eager to earn enough money to begin funding my own non-profit. Not having a license to practice is limiting my ability to earn.  Anyway, I am not a lawyer and I can’t give legal advice but I am more than happy to speak on the subject of resurfacings based on personal experience and research.  As I write this, I am in a lot of pain and I worry that I don’t always make sense when I write.  I apologize if my writing isn’t linear or fluid right now.  My LTHR (total revision) is scheduled for Friday:-) I am very excited and grateful for the blessings that this new pain-free opportunity promises.

PATCHES AND BAND-AIDES

Prior to the sudden onset of pain in my groin in 2006, I was a triathlete.  My injury doesn’t appear to have been caused by any one particular event.  However, it started immediately, was constant and became increasingly worse.

It took me 3 years to get the doctors at Kaiser to agree that I needed something more than random x-rays, pain meds and steroid shots.  I pestered them relentlessly for answers but somehow they managed to convince me that my pain was in my head. In 2007, frustrated and unhappy with their lack of answers and desire to find reasonable solutions, I went out of network and paid for a left hip MRI that confirmed I had a tear in my labrum (cartilage). Relieved that I had found the source of pain and eager to find solutions, I brought the results back to Kaiser.  The doctor reviewed the images but even then, questioned the technician’s assessment of what the pictures revealed. In his own frustration and desire to have me out of his office, he finally agreed to send me up the chain to their arthroscopy clinic.

In 2008, I saw an OS who specialized in hip arthroscopy. He ordered a contrast MRI and a couple weeks later, I had a scope to remove bone spurs and repair the tear. Unfortunately, the scope failed within a few weeks and left me with quickly progressing osteoarthritis.  The new images revealed that my hip was bone on bone.  I was in tears all the time.  I remember sitting through my 3 hour classes on my knees because I was unable to sit in a chair.  I took many of my exams on my knees, anti-inflammatories and various pain meds. Still frustrated and unwilling to believe I had to live this way, I started looking for alternatives.

“SURFACE HIPPY” IS NOT MY FRIEND

I began researching everything I could find on hips. For nearly every online search I did, somehow I always ended up at the “Surface Hippy” website. After hours and hours online, SH and their fully staffed and always available support team of “well-informed” nurses and advocates, had me convinced that a total hip replacement was an irresponsible mistake for someone like myself who is young and active.  I totally bought it.  I wanted to believe there was something short of lopping off my femur that would allow me to live a full pain-free life and this new and improved resurfacing device had to be it! It’s amazing how much fear influences our decisions, isn’t it? The messages constantly conveyed were, “Yes, you should do this, its better! Resurfacings are great because if you have a “total”, all your days of running and high impact sports will be over.” I never got a sense that anything serious could go wrong and the explanations for failure always seemed to be the patient’s poor choice of surgeon.  Of course my surgeon wouldn’t be one of those! Right? At the time, I didn’t know much about how websites were maintained. I do recall being perplexed by the number of readily available doctors that could answer my questions almost immediately.  They were there to generously review my films and physician’s reports if I so desired.  Wow! I can’t even get my primary care doctor to respond like that.  The endless advertisements for various “life-saving” resurfacing devices plastered on every SH page should have clued me in to whose site this really was.  At the time, I wanted to believe and I did believe that there were organizations and laws in place that surely wouldn’t allow for something to be mass marketed that hadn’t been thoroughly researched. Of course! We have the FDA, right?  There are still people in the world who value objective, honest reporting over profit, right? Well, I was naïve and given my desperate desire for relief, easily led astray. It didn’t help that I had all the wonders of a resurfacing confirmed by my new surgeon either.

In September of 2008, at the recommendation of my primary who insisted that I was too young for a total hip replacement, I saw an OS who specialized in hip osteopathy. This OS is a self-proclaimed “pioneer” of resurfacing.  When I met with him, I waited over an hour to see him and spent all of 20-30 minutes in the examination room.  He said that because of my age and desire to continue exercise that I would be a good candidate for this alternative to total hip replacement.  I was desperate to be free from pain at this point, trusted his recommendation, all the web propaganda that supported it and I agreed to take his first opening: And so began my “dysfunctional relationship” with a Birmingham Hip Resurfacing.

MY “FAST-FOOD” SURGERY AND NON-RECOVERY

My BHR has never been right from day one. My experience in the hospital was beyond awful. During the procedure, I could hear saws and discussions about dislocating my hip.  I remember looking up at the anesthesiologist and begging her to put me out.  As I was being wheeled from recovery to my room, I asked the nurse if I could have some food.  After all, it had been about 15 hours since I had eaten anything and I wanted some pudding or juice. The nurse brought me a plate of chicken and vegetables: Which I immediately returned to him in a bucket. I was freshly out of surgery, wasn’t thinking clearly and wasn’t aware that eating protein would make me sick. At least when I vomited, I was nice enough to manage putting in the bucket. When the nurse returned to take it, all he could say was, “I told you so”.

The following day the OS came to check on me and noticed that I had never been given compression socks for my legs.  When he asked the nurse why I didn’t have them, the explanation was that they “ran out” and they decided that because I was young and healthy that I could go without.  Instead, they elected to give the last pair to the lady next door.  At least three times during my short stay at the excessively noisy hospital, nurses attempted to confirm WITH ME the type of pain medication the last nurse on the shift had given me.  They always seemed confused and distracted.  Needless to say, I left the hospital as soon as I could.  As I was being wheeled out, I was told that I couldn’t take the wheelchair past the front door.  I asked if I could have a walker and they said it wasn’t covered in my plan.  They gave me crutches but because and I had to make my way to their parking garage through all of their re-construction, there was no way to get a car close to the door. So we took the wheelchair anyway and returned it once I was safely in the car.

When I returned home, I received two or three home health visits with PT which were discontinued because I told them I was required to go back to school or I would be required to drop my classes.  Since I was leaving the house, I couldn’t get any more in- home physical therapy. So, I started back with a little walking and stretching on my own, only to find myself in extreme pain 3 to 4 days later.  I asked the surgeon about this and he just said I needed to slow down.  I pressed him about PT and was denied it at every turn.  The explanation was that I was “a young athlete and understood exercise and didn’t really need it”.  At my follow up appointment, my OS handed me a sheet with some little stick figures on it and said to go home. Unfortunately, my insurance premiums were raised another $100/mo at the start of 2009 (surgery was 9/08) and I could no longer afford to follow-up.  The last appointment I had was to the pain management doc who told me that I “might just have to learn to live with the pain”. In the end, I addressed my pain by becoming completely sedentary.

Fast forward to March of 2011: Remaining sedentary became less effective and by October, I had to leave my job because I could no longer sit.  My thinking had also become compromised and the complex legal research I was doing was no longer possible.  Unfortunately, I had also become one of the many Americans with a pre-existing condition. Because of the BHR, I was now uninsurable and I felt like there was nothing I could do. I then began my struggle with MediCal.  Longer story short, I was eventually approved for a THR at Stanford but it was cancelled the day before the surgery.  The doctor at Stanford was so reluctant to deal with MediCal that he immediately excused himself from my care when he found out that they wanted me to get a second opinion with see someone at UCSF.  After having my disability form for 3 weeks, the Stanford doctor suddenly decided that in his opinion, I didn’t fit the definition of disabled and he wouldn’t fill out my form for state disability. Because of his sudden rash decision, I have had to borrow money from friends to keep a roof over my head.  I had to go on food stamps to keep food on my table. In addition, I have no family locally and I have had to navigate all of this alone.  The good news: I finally have a doctor who is graciously willing to accept the revision of my BHR at UCSF.

MY PROBLEM WITH THE BHR AND HOW TO FIX WHAT IS BROKEN

My physical symptoms run the gamut. I have elevated cobalt/chromium, a large gouge in the neck of my femur from the cup rubbing into it, thinning of the neck, and constant pain.  THE CUP IS TOO BIG EVEN THOUGH THE DEVICE IS SMALL.  In my opinion, this device was created for the male structure.  If one reviews the clinical history of the BHR, there were no focused studies of its use in women. In fact, the only data the FDA considered prior to its speedy 510k approval was the data provided by the designer of the device itself.  Where are the unbiased clinical studies?  Additionally, problems related to “stuffing” these in smaller frames was never considered for a second by McMinn/Smith & Nephew.  All they could see were dollar signs and into the hands of our surgeons they went!

Interestingly, the most common explanation for failure that proponents of resurfacing use is “poor placement by inexperienced surgeons”. According to my latest OS, my BHR is placed perfectly.  How do explain that? Except to say the problem lies with the design and manufacture of the device. Those same proponents also sight metal sensitivity as a cause for failure.  Well, personally, I do not have a metal allergy. Yet, I have dangerously elevated metal ions in my blood. How do you explain that one?  Except to say the problem lies in the design and manufacture of the device.

Let’s just put two and two together here folks.  It doesn’t take a surgeon or a degree in physics to figure this out. This is a metal on metal device.  And just like the DePuy and all the other recalled total metal hip replacements, there is direct and constant metal articulation.  It is really quite simple.  You rub any metal on another metal and there will be metal ion release. Again, the problem lies in the design and manufacture of the device.

I won’t know the extent of the soft tissue damage until my surgery.  In addition, I guess I will have to wait another 20 years or so to see if I will have renal issues or cancers caused by heavy metal exposure.  By then, there will be nothing I can do to recover for the damage already caused. All I can do right now is fight to get well and help others get the word out to the public and our representatives. Here is what I believe MUST happen:

1) All metal resurfacing devices MUST be removed from the market,

2) The 510k approval process must be revised to include mandatory unbiased United States based clinical studies,

AND

3) When it comes to pharmaceuticals and medical devices, ONE SIZE DOES NOT FIT ALL! We must have clinical trials that are specific to women prior to mass market use.

Katie

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