Friday, October 4, 2013

When life gives you lemons...

So these last few weeks have been really difficult.  It was such a shock hearing that a need the ultimate hip surgery to fix the real problem with my hips.  I feel betrayed by the medical community and frustrated with the surgeons I had seen.  For so long I was told that nothing was wrong.  For example, the first surgeon that I saw in Marshfield, WI after I got my diagnosis told me that since I had good range of motion still that I did not have FAI and that if I continued to have pain that I should go back to my general practitioner.  Well of course I was going to continue to have pain, I had already been in pain for 5 years!  The blatant dismissal without any further investigation was heart breaking for me at the time.  I did not give up on my hip though and pursued a second opinion with the surgeon who would eventually do my first scope.

Looking back at all the surgeons I saw, all the PT that I did, and all the general practitioners that I went through, all the while hoping that maybe, just maybe, this surgeon or doctor or PT would make it all better, once and for all.  Because of the lack luster care from the medical community, my distrust in doctors has gown exponentially.  I always want second (or third, or fourth) opinions about things.  I do a ton of research about everything now before I trust anything a doctor says to me, which really goes against everything I was taught growing up.  I was taught that the doctor knew how to fix you when you were sick and that was the end of it.  There was no questioning him/her, it just was.  Which is why I think that this was all so hard from the beginning.  To question that a surgeon could be wrong was just not something that I had heard of, but it is now something that is second nature to me.  Which, when you think about it, is a great thing.  Critical thinking should always be used in all things, but to have to question someone who is suppose to make you feel better, who is suppose to be on your side, seems maddening.  Add to that the hundreds of dollars you get the privileged to pay for their 'opinion' and I sometimes feel insane!  If I wanted to discuss opinions then I would just have a heated conversation with certain family members and that's free.  But to pay for the privileged of someone to tell you that your wrong about your pain and discomfort seems barbaric in our modern society.  But I shall digress from this conversation seeing as I could go on forever about the American medical system and the insanity of it all.

What I really wanted to write about tonight (or early this morning) was how much I have learned and how I want to share what I have learned with everyone!  I never want someone to suffer like I have.  I never want someone to think that they are crazy because some untrained doctor or radiologist cannot find the correct diagnosis for their pain.  In the past week I have been sharing my story high and low, in all corners of the internet trying to get the word out about FAI, labral tears, femoral anteversion, etc.  I see posts on Reddit about groin pain and how they are told is a hernia or a strained muscle and I can only shake my head because I know that at least 10 of those 20 posts I saw are going to be misdiagnosed and most likely have either FAI or labral tears but they will suffer in pain until someone somewhere down the line makes a correct diagnosis.

What happened to me should have never of happened.  Doctors, PT, nurses, etc all have a duty to patients to not give up on them until finding out the true reasons for someones pain.  For $500 for an initial consultation with a surgeon, patients deserve more than 'I do not know, see someone else' and pass the buck onto a different doctor.  Its maddening!  And its awful that its allowed.  Everyday people are passed off and shoved away when answers are not easy to find.  Is that was med. school is teaching students, how to pass the buck without follow up?!  I find this unacceptable.

But, given my situation I want to make the proverbial lemonade out of lemons.  I want to share my story in as many places as possible, with as many people as possible to get the word out about FAI, labral tears and how finding a well educated and trained surgeon is the single most important thing you can do for your care.  It does not seem like a big deal when you are looking at your first scope because if your are anything like me, you'll think 'I am not special, I do not need a "top" surgeon to fix me, I just need someone who is a surgeon', but I beg of you, please do not fall into this trap.  While I did not have any glaringly obvious done deformities, like dysplasia, I have a ton of rotational issues, none of which were found by my first two surgeons because a rotational study was not done.  Imagine how much pain and money and heartache would have been saved for me if my first surgeon had the training and forethought to order a rotational MRI or a CT scan?  I even had family members encouraging me to see the hometown surgeon because "You don't need the best, you just need someone who can get the job done".  Oh how wrong they were.  I think that hip surgery is often mistaken for knee surgery, especially scopes, in the sense that its easy, its done routinely, and often has very little complications.  But the hip is a very DEEP and hard to reach joint, something that the knee is not.  Thus access is tricky and limited.

So to wrap up this late night rant, PLEASE go to the best surgeon you can afford.  Find a surgeon who has trained at top hospitals like the Hospital for Special Surgery, or who has done a fellowship with top scope surgeons like Dr. Philippon, Dr. Kelly, and Dr. Byrd.  ALWAYS ask for a rotational study to be done either through an MRI or a CT scan (this is more accurate).  Then get a second opinion and a third opinion.  Many surgeons like Philippon and Kelly do free film reviews, take advantage of this!  Send in your films.  And last, but not least, please educate yourself on these things.  Know what would make you a good scope candidate and what would not, know what your angles are (alpha angle, CE angle, version angles are all important) and if your surgeon does not know, run for the hills, run as far away from that surgeon as possible!

So I will leave you all with that note.  I will be spending a lot of time on the internet these next few weeks, trying to spread my story far and wide so that I can hopefully help just one person avoid the heartache and pain that I have endured due to the medical communities error.  If your reading this, please share with anyone you might know suffering from hip/knee/lower back pain.  You may just save their sanity!  Thanks for reading!

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