Scientific Studies vs. Real Life Experiences: Why I Recommend The Doctors I Do
By: Vicky Marlow
LBHR Dr. Bose Dec 01 05  UPDATED March 12, 2012
Doctors have a vast array of scientific studies that they can reference to their advantage even though they may not match their own personal outcomes. When I heard Mr. Treacy speak at a conference I attended, his opening statement was a joke about how the one thing he has learned from studies is that you can really make them turn out pretty much any way you want them to. The response was a thunderous laugh from the huge audience of orthopedic surgeons.

All we have as patients, ones that are here to actually and genuinely help other patients, are the thousands of posts we read from real life people and the countless phone calls and emails received and replied to OFFLINE, again, helping and working with REAL LIFE people. Many of the veterans have taken their posts offline due to certain personalities that come on Surface Hippy (SH) that seem to get a kick out of stirring things up and causing confrontations.

I received an email from a friend and he worded it much better than I, so I am going to draw from some of what he said to me below.

"What some people fail to consider is that there is a very large amount of offline activity. First and foremost, because SH is such a relentlessly upbeat forum, (back in the day) people with problems often feel like they can't post when their resurfacings have gone bad. It's a very small number that come back to tell about their pain or their revisions. But they are out there."

Well of course with the change of the climate since I originally posted this, a LOT is completely different now.  Surgeons now know the correct angle to place the cup where when I started ny research hey focused  mainly on the placement of the femoral component.  At that time, they felt THAT was the important factor.  Trust me, surgeons, or most of them, do NOT do this to purposely hurt patients, they are in this to change peoples lives for the better,  Some are in it for the money only and  I refuse to name names but I know what I know. 

Placement and what was consdiered THE most important factor years ago is VERY different than what they know today.  That is NOT their fault, the first part about believing femoral component positining was THE key in this procedure. that is just what they knew at the time. 

We would NEVER be able to move  forward with newer twchnology if it were not for NEWER TECHNOLOGY of which many of us were guneea pigs to.  But when I looked at the two options and JUAT  what a HUGE difference there was between the two, to me, personally and again this is JUST MY OWN PERSONAL OPINION, I was MORE than willing to become one of the gunea pigs and very luckily  I happened to find one of THE best surgeons in the world and I am a success story, EVEN though I am pretty much the PERFECT poster child of what NOT to resurface in most surgeons eyes.  But this was MY deicision and YOU need to make YOUR OWN.

First, I am a Female, extremely small boned 42/48, extremely allergic to metal earrings and about to enter menopause, not for my first surgery but for my second surgery AND I have mild dysplasia.  BUt MY decision was that I would rather take my risk with a Metal on metal BHR than have all of my perfectly healthy bone amputated and live with restictions the rest of my life... like my Mom does.  YES, they CLAIM the NEWER THR's have no restrictions but there is just NO data to back that theory yet that I personally know of.

Over the 6+ years I have been keeping my finger on the pulse of all things hip resurfacing, it is NOT the surgeons faults.  As with ANY newer technology, it takes time to perfect it when actual data comes out.  I give these surgeons a TON of credit for being pioneers in a procedure that I and many others SO Believe in and were SO very lucky to be part of.  Yes, some NOT so lucky, but hey, there is NO such thing as a 100% success rate with ANY major surgery.

Do NOT get me wrong here, I FEEL for all of you patients that ended up with a malpositioned component OR a defective deivce, but the only way to move forward with technology is to try it out.  AND to let your surgeon KNOW when you went to another surgeon for a revision.  They want to know, and if they do NOT know, how can they change??? Or if they do not know or care, then they were not worth it to start with.  But from my experience, most surgeons want to know what they might have done wrong or differnt so that future patients also do not end up with the same mistake or problem, so they can fix it next time for future patients.

For me, personally, I would NOT trade my BHR's for anything in the world, but again, that is JUST me.  If it even gives me an extra 5 years from having to have all of my bone removed (and my Left hip is now well over 6 years!) then it was WORTH it to me, so obviously I went back and got my other side done a little over a year ago.

 Agian, so far I am, well over 6 years post op on my first hip and as happy as they come.  Do I consider myself an athlete?  Absolutely not, but many of my personal trainers have argued that point with me because I do work out consisitently. And I happen to be one of those lucky ones that was born with great muscle tone,

Both Alan Ray and I helped a lot of people offline. He was MY saviour when I was doing my research, my guardian angel, when I first joned a support group, HE was ME, and took his time, counltess hours to take the time to talk to me on the phone and via email. I thought HE was the owner of that group because the actual owner was NEVER there, ha[py to see that he finally is taking an itnerest after I stared our group.  :-)  I just want what is best for patients.

I will forever be graeful to him and he will be a friend to me for LIFE!

But the stresss of the constant fights and bickering  and PERSONAL attacks against him, even though he worded everything so eloquently, and that came from the other group, p;us having to repeat the same answers over and over and over agin to newbies, also got old.  That is why I startee my webiste, so I can post a link instead of having to constantly repat myslef.

TRUST ME! it gets old really fast!

It became eventaully unberaalbe for him, which to me is such a shame becuase he was my guardian angel as well as MANY others.  Because the owner of that group just DID NOT HAAVE THE TIME TO BOTHER~~~~ 

I promise you Alan if you uever post on our group, I will NEVER allow that to happen to you you were a HUGE part of my life changeing experience!  And I will FOREVER be graeful to you!

, and he could ALWAYS word posts so much better than I,  But sadly I had to observe some of the really biiter personal attacks that ALWAYS occurred on SH becuase back then in the over 6 years I posted over there, there WAS NO moderator unless a HUGE fight broke out, then it was like pulling teeth to get the owner go tbe involved and he would place the ENTIRE group on moderate mode, punishing EVERYONE.  I am sorry, but to me, that is in NO way how to run a SUPPORT Group!  We lost SO many great menbers and that is such a shame and to me, NO way to run a support group.  I promise each and every one pf yuo that I WILL read every single post ever posted on this support group, OUR new support group so that conflicts get stoped prior to them becoming unmanageable.  

 As those of you that know me, know welll, that this is my passion in life.  I am 100% dedicated to this and more.  So I applogize at times when I blow off some steam, but you have NO idea what does no bhind the csnes sometimes and after all.......I am ONLY human.

Anyway, back to the subject:

We have access to a lot of stories that most people never hear about, and we remain ethical enough not to post details about other people's problems or about the doctors involved.

The world is not as black-and-white as some would like to believe it as. One doesn't need a statistically-backed study published in a peer-reviewed journal to know when something is wrong with a particular doctor or approach or questionab;e device he is using??

I keep track of a lot of data, not only posts, but private emails and phone calls as well. Currently I speak to at least one patient a day on the phone and sometimes up to 6 patients a day.

To give an example, I spoke to and worked with 4 patients and know of 2 others of one particular surgeon, and now many more since then, who will remain unnamed. The outcomes have been far from positive, several needing revision surgeries to THR’s and a couple ready to have theirs revised. You will never see me suggesting this surgeon. Have these patients posted on SH? Yes, prior to their surgeries and prior to their problems. Does anyone on SH know about these problems? Certainly not, as evidenced by reading the board. Has this doctor had some positive outcomes? Sure, but considering this particular surgeon has not done that many resurfacings, this is NOT a surgeon I will ever mention. Is that data published anywhere? Absolutely not. Will there be a patient that posts on SH about having a good outcome? Absolutely, but you tell me, if you were sitting in my shoes, would you look at 6+ failures (and that number keeps growing) that you personally know of in less than 100 procedures and not do something to suggest a different surgeon to  a future patient?

On the other side of the coin, I have met many doctors in person and I can see and hear the difference between those that have passion in their voice about hip resurfacings and can tell that they genuinely care about the outcome of their patients and advancing their knowledge and skills to better serve their patients versus those that I can genuinely tell they only care about the outcome of their practices.  Do NOT get me wrong here, I am looking for more qualified exellent surgeons to add to  my list, My hope is that eventually patients will not have to travel for this major surgery but that there WILL be a qualified surgeon, not too far from home and In their insurance plan.  But right now, we are NOT there yet.  PLEASE, if you know of an excellent surgeon that uses a PROVEN device that has an excellent track record, not just if you are 2 months post op and doing well, because with the one RECALLED device out there, it took 4 entire years before thef failures began to show up and another 3 years before that company actually FINALLY recalled that device.  My heart lieterally goes out to these patients, it sincerely does.

I gather a ton of data in many ways, from patients, reading stories from patients, from the doctors themselves, etc. Out of all of this gathered information over the past six plus years, I have come to my own conclusions. Those conclusions are constantly evolving with the more I learn.  My opinions and vies are completely differnt today then what tehy USED to be several years ago because of what I have learned. 

 Are they right or wrong? No, they are just my own PERSONAL opinions based on education and experience, and some of it is based on gut instincts as well. I am a patient advocate. I try to stay as neutral as possible, but I always look out for the patient’s best interest first, not the doctor’s best interest or any manufacturers, but the patient’s best interests. AnND I do NOT get paid to do any of this.  

 My goal is to only see hip resurfacing succeed, so that FUTURE gnerations hav ethe incredible opportunity I was able to obtain.

 My suggestions change over the years as those that have known me for that long have noticed, and for reasons I cannot publicy explain but I can tell you this, darm good reasons.  I want to see hip resurfacing SUCCEED, for FUTURE generations, like my own daughter who has complained about hip issues for the past everal years but finally last month actually felt the need to discuss it with me over our normal Sunday family dinner night.  That concerned me.  I do not think she is ready for surgery now, but from her explanation of her symptoms I can see it happening psisibly within the next 5 years.  Both of my parents got both of their hips replaced, so it runs in the family, although luckily NONE of my sibling hade any hip problems.  But I HOE with all my heart that an option like the BHR is available to HER IF and when she neeeds surgery becaue I just cannot imagine someone in their 20's getting a THR, but, that is just me.  And I love my daughter more than I do myself and of course only want the best for her.  My Mom was in her 60's when she had her THR's and 10 years later is looking to book her surgert akreadt fir a revision, the SAME device a doc at STANFORD I was scheduled to have surgery was planning on giving ME, and I was only in my 40's!  My Dad was in his 7-'s for his first THR and when he was 80, he had his second.  We do not know what this happens, my gues is that y generations was extremely active.  I was a cheerleader in College, VERY differebt than being one in HS, because is can be SO dmanding and physical, practice EVERY single morning at really early hours, and my daughter followed in my footstpes and was a cheerlead at UC Berkeley, yes, that is right, what  HUGE accomplishment and I could NOT have been more proud of her.

I recommend certain doctors because I see their outcomes and talk to their patients. I don’t recommend certain doctors because I see their outcomes and talk to their patients. Is this a scientific study? Absolutely not. But if you only believe in scientific studies and discard the real life experiences of people that have become your friends as fellow surface hippies, then what is the point? Which would you tend to believe? A fellow surface hippy calling in tears (happy or sad) or a scientific paper or study?

 Vicky