Digging for a Diagnosis? Getting a 2nd Opinion Can Be Critical

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Getting a Second Opinion

The Wall Street Journal recently printed an article titled “What if the Doctor is Wrong” that really struck a chord with me because as much as I love doctors (after all, I’m married to a surgeon!) I know that if you happen to have an “outside of the box” health problem an otherwise excellent doctor can easily miss the diagnosis and quite possibly may have never even heard of it in the first place. This is what happened to me.

But, before I get to my story please know I am not blaming the doctors that didn’t diagnosis my problem; I blame myself. For years now my instinct—and pain in my hip— told me something “outside of the box” was wrong but instead of going to the best specialist I could find to get to the root of the problem I wasted hours, months, days and years plus thousands and thousands of dollars going to various doctors in our insurance network (which offered an annoyingly limited few to choose from) in addition to trying every alternative therapy in the book.

As a sidebar I can also tell you there is absolutely a placebo effect that can occur when you spend time and money to try and feel better because many of the alternative therapies I tried did help in the beginning but sooner or later I would realize they weren’t working…and the hip pain was still there. Disturbingly, some of the alternative therapies actually exacerbated the pain considerably, which is the entire point I am trying to make sharing my story in the first place: if you don’t know what is wrong then how can you—or anyone else—possibly treat it? That doesn’t mean I am not a big believer in alternative therapy! In fact, those of you who know me and know about my diagnosis with multiple sclerosis (MS) in 1998 know I made the decision to try and [intlink id="146" type="page"]treat this particular condition naturally with nutrition[/intlink] before going the pharmaceutical route. Knock-on-wood, so far the natural nutritional approach is working very well for me and the MS issue. So, again, I am by no means against alternative therapy.

In fact, knowing myself as well as I do I know that even if I had received the proper diagnosis with my current hip problem from the beginning I would have surely given every reasonable alternative therapy a try to avoid the major surgery I am about to undergo. Whether you try alternative therapy or not is not the point I am trying to make. The point is you need to have the right diagnosis in order to treat the problem.

Digging for a Diagnosis

I’m going to try not to waste a whole lot of time sharing my story because it is such an “outside of the box” condition that the chances of anyone reading this having it are slim to none. But, if I didn’t have the right diagnosis I would have little hope of getting my problem fixed and instead the pain would surely continue to worsen as it has done now over the years. Anyway, to make a long story short I have had pain in my right hip joint ever since I was 24 years old and pregnant with my son in 2000. I gained 25 pounds with my pregnancy and all of the pain was blamed on the pregnancy weight. My son, Blake, was born 7 pounds 15 ounces and I quickly returned to my pre-pregnancy weight.

But the pain remained and since the MRI’s and various tests I had couldn’t pinpoint a diagnosis the pain was blamed on my MS. Considering the pain was deep in my hip joint the MS explanation never made a particle of sense to me but none of the doctors or therapists I visited could come up with a better explanation.

Every year the pain would get a little bit worse and at times it would be downright awful, with sitting always being the absolute most uncomfortable position because no matter how I sat I couldn’t get weight off my hip. If I were overweight then I am sure my hip pain problems would have been blamed on the excess weight but I’m not overweight. To complicate matters, while the pain remained constant in my hip joint it would radiate down the back of my leg, my butt, the front of my thigh and my lower back. And the pain went on and on and on. Of course the pain was not always terrible and many times it has been a very distant pain, but it has always been present. And anyone living with a constant pain of any sort knows how maddening this can be.

Then in 2008 I was diagnosed with a hip labral tear and was ecstatic to believe I finally had a diagnosis and that my hip pain could be cured with a surgery! At this point I had already spent 8-years trying alternative therapies so I could hardly wait for the surgery and underwent a hip arthroscopy as soon as I could get on the surgeons operative schedule. Well the surgery was not a success. I spent 2 months on crutches and got zero hip pain relief. The surgery was a nightmare and actually made the pain considerably worse for a few months. But I eventually returned to my “normal” pre-operative state of functional hip pain but this time with less hope. I was more frustrated than ever because if the diagnosis was a labral tear and the labral tear was “fixed” then why did I still have pain? To make matters worse, the pain continued to slowly worsen…

Getting to a Specialist at the Hospital For Special Surgery

I haven’t been able to sit comfortably in a chair for years now and although I exercise regularly for the past 6 months I haven’t been able to jog, fast walk, bicycle or do anything else physical other than strength train in a slow and controlled manner (not exactly a “fun” way to stay fit!) I have had countless sleepless nights and more crying fits about hip pain than I can count.

Fast forward past the frustration and past the crying jags to a few months ago when the hip pain once again flared up to the point where I couldn’t sleep for over a week. “Enough!!” is what my husband finally said. He too knew something was wrong but even as a surgeon who surely has a vested interest in helping his wife get rid of her hip pain he too was at a loss for what was causing the problem. But he scheduled an appointment for me at the Hospital for Special Surgery in NYC, arguably the best orthopedic hospital in the country, and he made an appointment with a surgeon who specifically deals with hip pain in young adults (I’m 35-years old). And in a nutshell here’s what we found out:

  • My hip labral tear is back but worse, I learned I have a congenital condition called Femoral Retroversion where my femoral head is rotated 22 degrees “off” what is normal and is pressing into my pelvis. My degree of retroversion is considered severe and the orthopedic abnormality is causing hip impingement, which is simply a mechanical issue and the reason I got the labral tear in the first place (probably brought on by the pregnancy) as well as the cause for the early joint deterioration and chronic hip pain. The first surgery to fix the labral tear was basically a “band aid” surgery because unless the underlying problem is fixed it will come back. With age and without the surgery my hip will continue to deteriorate prematurely from the pressure of my femur pressing into my hip socket. The only way to fix the problem is with a surgery called “Femoral Derotational Osteotomy” where my femur (leg bone) will be broke in half and the shaft will then be rotated to put my femoral head in the “normal” position. And yes, it is a major surgery…the sound of it even made my surgeon husband a bit nervous. And I am not exactly thrilled about the fact I will need to be on crutches again for 2 months.

Of course the diagnosis and surgery can be described in considerably more detail than what I gave but once you hear the diagnosis and see the CAT scan and physically see the special x-rays that were taken even someone like me who does not have a medical degree can use common sense to conclude that the surgery is necessary (plus I suppose it helps that I have a 10-year plus history of trying everything else that has failed!) But without the proper diagnosis there is no way the condition could have ever hoped to have been treated.

In fact, some of the therapies— especially some of the exercises I was advised to do—were causing more harm than good and exacerbating my hip impingement because I was being treated by people who assumed I had normal hip anatomy. Again, how can you treat something if you don’t have the right diagnosis?

A 2nd Opinion Can Be Lifesaving

No doubt my hip condition is “odd”, but I am not an anomaly as many people suffer from mystery health problems for years and years before getting the proper diagnosis. I believe we live in an amazing era of health care and that many conditions can be treated both holistically and medically/ surgically IF they are properly diagnosed in the first place. And of course while an ounce of prevention is worth a pound of cure some conditions can’t be prevented but there is hope that a great deal of conditions can be treated—IF you know what you are treating!

My biggest mistake was having a gut feeling that something was wrong and not taking the initiative to find the best specialist I could years ago. I would have saved thousands of dollars, countless hours and avoided the failed first surgery if I had known what the problem was from the beginning.

I write this one week before my surgery is scheduled at the Hospital for Special Surgery and I know that the surgery is not without risk. But I am at peace of mind because I know I have tried every other alternative therapy. I am holding out hope that all will be ok and that this hip pain will go away once and for all. And at least now I am at a place where I am being treated by a surgeon who intimately understands my “odd” condition. I also realize surgery is sometimes the only option—afterall, it was surgery that “cured” my two hernias (again, a congenital problem that I developed when I was a child) and my appendicitis. I would hate to think what would have happened if I had not been operated on years ago for those issues, but luckily a hernia and an appendicitis are easier to diagnose than my current issue and don’t necessarily require finding a super-specialist.

My best advice is that if you have a gut feeling something “outside of the box” is wrong and that your condition hasn’t been properly diagnosed I urge you to get to a specialist. I am lucky that my hip issue is not life-threatening but if you read the Wall Street Journal article you will realize that a 2nd opinion by a specialist can be lifesaving. Not everybody will have the “luxury” of waiting over 10 years like I did for the right diagnosis….

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Comments

  1. JoAnn says

    Ivy-gIod luck with your surgery. I originally found you because of your MS, which my younger brother has. Purchased your book for him with high hopes.

    • says

      Thank you SO very much JoAnn. I am happy you found us. I do hope your brother is ok? Have you seen the articles we have on the site specific to MS and diet? Thank you again for the well-wishes. It means a lot to me! –ivy

  2. Diana says

    Hi Ivy,
    I’m not sure when you have written this, a friend sent me the link to your site. I have had bilateral derotational osteotomies also at HSS, I’m 8 weeks out on the 2nd surgery. I was anteverted rather than retro. I would love to “compare” notes and if your surgery hasn’t taken place yet offer any advise!

  3. Carrie says

    Hi Ivy,

    First I want to wish you luck on a successful surgery and speedy recovery.

    Second, I wanted to let you know that you are not alone in the complicated hip world and there is a huge group of us on a Yahoo support group.

    I just had my 4th hip surgery at HSS, and although my very “odd” complication is different than yours I can relate as my story and quest for diagnosis is almost identical to yours. There are several of us on this group who have similar stories and situations and I know of one person specifically that just had the same surgery as you, and with Dr. Buly too. I’m sure she would love to speak with you…we all would! :)

    Anyway, good luck today and let me know if you would like to talk, vent, commiserate…whatever…I am available! :)

    Carrie

    I

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