Do you ever wonder if you have the wrong diagnosis?
Do you have bothersome, painful or debilitating symptoms that have persisted for months or even years?
Have you been diagnosed and treated with X, Y or Z condition yet still don’t feel better?
According to statistics compiled by the National Institutes of Health (NIH), an astonishing twenty-five million Americans suffer from rare illnesses or conditions, many of which go undiagnosed for years. I should know, it happened to me….
If Your Treatment Plan is Not Working, You Could Have the Wrong Diagnosis
I spent over ten years undergoing countless treatments for what eventually became debilitating hip pain after repeatedly being given the wrong diagnosis. It wasn’t until I was seen by a “super specialist”, Dr. Robert Bully, at the Hospital for Special Surgery in NYC that I finally obtained the correct diagnosis and got the treatment (albeit a drastic one) that actually worked.
The photo of me above was taken February 3rd, 2015, exactly two years after a 7 hour derotational osteotomy surgery was performed to correct a congenital hip disorder that was finally diagnosed: femoral retroversion. It was a rare condition that I had never even heard of during the ten years I spent searching for answers to my hip pain. My femoral head was rotated 22 degrees “off” what was normal and was pressing into my pelvis. My degree of retroversion was considered severe and the orthopedic abnormality was causing hip impingement, a mechanical issue that was causing early joint deterioration, chronic pain and a large labral tear. By the time my condition was finally correctly diagnosed my hip pain was so severe that there was no position I could be in that was comfortable–I was in pain sitting, standing, walking and lying down. With age (I am now 38-years old) and without the surgery my hip would have continued to deteriorate prematurely from the pressure of my femur pressing into my hip socket. The only way to fix the problem was with a derotational osteotomy where my femur (leg bone) was broken in half and the shaft then rotated to put my femoral head in the “normal” position.
The surgery left me with a broken leg, a rod, screws, a huge scar on my hip and on crutches for over 6 months. But as I stood on my new and improved leg just the other day, I couldn’t help but think of what my life would be like today if my hip was not fixed. How could I have gone on in chronic pain for the rest of my life?
Although my particular condition was rare, my story is not. Statistics show there are millions of people suffering from fixable and treatable conditions that have simply been given the wrong diagnosis. A particularly disturbing study published by the Mayo Clinic found that patients were either given the wrong diagnosis or the true cause of illness had been missed in roughly 20 percent of patients who underwent autopsies after dying in the intensive care unit.
If it weren’t for my husband (who happens to be a surgeon), finally insisting I go to the Hospital for Special Surgery and be seen by a “super specialist”, my hip pain would have continued to increase as it had done for over a decade. No doubt my quality of life would have continued to be greatly affected. And, because the pain ultimately became severe enough that it began to change my outlook on life, it was also affecting the lives of those around me. Sadly, this same scenario is happening to millions of other people.
What if the Doctor is Wrong?
The Wall Street Journal published an article titled “What if the Doctor is Wrong” that really struck a chord with me. If you happen to have an “outside of the box” health problem an otherwise excellent and caring doctor or alternative health care practitioner can easily make the wrong diagnosis. The well-meaning folks in your neighborhood quite possibly may have never even heard of your condition in the first place! This was exactly what happened to me….
It’s Hard to Diagnose a Condition If You Don’t Know It Even Exists
Please know I am not blaming the doctors or any of the other health care practitioners I saw for repeatedly giving me the wrong diagnosis; I blame myself. To this day when I tell people in the medical or health care community about my femoral retroversion and the derotational osteotomy I underwent to correct it the problem all I get in return are blank stares. Even my husband had never heard of femoral retroversion nor the surgery (and he is a surgeon!) until we went to the Hospital for Special Surgery.
For over ten years my instinct—and the terrible pain in my hip— told me something was wrong with my hip joint. But, because the initial x-rays and MRI’s never showed anything wrong with my hip and because the pain eventually spread to other parts of my body, I allowed countless doctors, surgeons and alternative health care practitioners to treat my symptoms will-nilly. I wasted hours, days, months and years not to mention thousands of dollars with multiple treatment plans for the wrong diagnosis. Every time I went to a new doctor or alternative practitioner I left with their opinion as to what was wrong. And a treatment plan. I always left with a treatment plan.
I take full blame for following through with the exhausting number of therapies and treatments because when I look back, I have to admit that I don’t recall anyone who treated me as being 100% confident in their diagnosis. I was always given an opinion as to what was wrong (such as facet joint disorder, SI joint dysfunction, iliopsoas bursitis, hip tendonitis, etc.) and then I was given a new treatment plan. And trust me, as much as I understand the psychological burden that comes with being sick and in pain as well as the desperate need to hear a diagnosis, the reality is, the wrong diagnosis can often be worse than NO diagnosis.
Keep in mind, an opinion that leads to treating the wrong diagnosis can spell disaster.
What is the Difference Between an Opinion and a Definitive Diagnosis?
It’s hard to put my finger on exactly what the difference between an opinion and a definitive diagnosis would be because it has been my experience that most health care professionals do not like to tell you that they can’t help or that they don’t know what is wrong. But, if you pay close attention there are most certainly clues, the number one being confidence.
If someone is treating you and they do not seem completely confident of being on the right track then a red flag should be raised. If you are not a good judge of confidence then you should just point blank ask a few simple questions such as:
- “What are the chances that this is the wrong diagnosis?”
- “How many times have you seen XXX condition in your practice?”
- “Have you had good success treating XXX condition?”
- “How long does it typically take for your patients with XXX condition to feel better with your treatment plan?”
Is the Wrong Diagnosis Linked to a Growing Interest In Alternative Medicine?
In my opinion, patient frustration with mainstream medical treatments and the annoyance of the whirlwind doctors office visit has contributed to a growing interest in seeking help from alternative health care practitioners.
The public in general seems to have become increasingly suspicious of mainstream medicine these days. And trust me, I totally understand. I am not only high suspiciousm but I downright disagree with a great deal of how modern medicine goes about treating chronic disease (typically by suppressing the symptoms.) I am also the first to admit that I run (not walk!) as far away from Big Pharma as my legs (rod, screws, and all!) will carry me. Another huge problem with our modern medical system is that doctors are under enormous amounts of pressure to keep office visits short; if your symptoms don’t fit the “mold” and your doctor doesn’t have the free time to do his own research then chances are high you could very well leave with the wrong diagnosis.
It has been my experience that in comparison to mainstream medical doctors, the alternative health care practitioner will spend considerably more time trying to get to the root of the problem. Many will also do their own research if your symptoms don’t seem to be aligned with a common diagnosis.
But, I do think we might all be losing the forest for the trees when we steer entirely clear of doctors (especially the “super specialists”) altogether.
The diagnostic tools modern medicine has to offer today are incredibly sophisticated and highly advanced. For the record, my condition was only able to be diagnosed after 3-D C.A.T. scan, which then had to be read by someone familiar with femoral retroversion.
Whether or not you ultimately decide to treat your condition via mainstream medicine/ surgery, you will undoubtedly have the highest percentage chance of treatment success if you utilize the modern diagnostic tools available, many of which require an Rx by an M.D.
It’s not that I am not a big believer in alternative therapy either. 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 treat my MS naturally with an anti-inflammatory nutrition program (you can read my full story HERE.) Knock-on-wood, so far the natural nutrition approach is working very well for me and my MS has been stable for over 15 years without any help from the pharmaceutical companies. So, again, I am by no means against alternative or natural therapy. But, the initial diagnosis of my MS came from a medical doctor and it came from another “super specialist” at that. Ultimately, it was my personal decision to treat my MS naturally, but had I been given the wrong diagnosis from the beginning, I feel confident my health would have been compromised significantly. Luckily, MS has actually been the least of my worries over the years.
Regardless of what your treatment approach might ultimately be, obtaining a diagnosis by working together with a mainstream medical doctor and an alternative health care practitioner might be your best bet.
Are You Wasting Time, Money and Life Treating the Wrong Diagnosis?
The sharp pain in my right hip joint started in 2000 when I was 24 years old and pregnant with my son. I gained 25 pounds during the pregnancy and all of the pain was initially blamed on the pregnancy weight. Looking back, that explanation was the first of many red flags to come. My son, Blake, was born 7 pounds 15 ounces and I quickly returned to my pre-pregnancy weight. My half moon belly was gone, but the pain stuck around. At times it would get somewhat better, but it was never non-existent. Never.
After my son was born my hip pain continued to worsen bit by bit with each passing year. Not only did it worsen, but the pain started to “spread” down the back of my leg, into my lower back, deep in my glutes (if you have ever had piriformis pain you know exactly where the term ‘pain in the A_ _’ is surely derived), down the front of my thigh and even into my shoulders and neck. Deep hip joint pain compounded with full body pains eventually became an albatross that weighed me down physically, mentally and emotionally.
The pain was too persistent to ignore and so I searched (and searched, and searched) for a treatment…
Between 2001 and 2007 I had eight different x-rays and six different MRI’s along with numerous other evaluations and physical exams by local orthopedic surgeons, sports medicine doctors, rehab medicine doctors, etc. I completed ten different physical therapy sessions in addition to weekly medical massages, active release therapy, acupuncture, rolfing, chiropractic care, spinal decompression and 10-weeks of the Egoscue Method. As the pain increased year after year I became more and more desperate and was willing to shell out increasingly larger sums of money. I went to pain management doctors for injections, bought a tens unit and spent hours in biofeedback sessions. I attempted countless relaxation techniques and even tried hypnosis. And don’t get me wrong, I am not knocking any of these therapies because I know each and every one can be effective for certain conditions. Although you may laugh at the idea of hypnosis and though I certainly cannot explain how it works, I watched Marc Savard hypnotize my husband right in front of my eyes in Las Vegas and I know it is a real phenomenon. I also know that some of my husband’s bariatric patients have used hypnosis to help with pain, weight loss, stress and more. The point is, all of these therapies can and have been used to help people. But they just were not helping me.
Looking back, I realize not one of the doctors or therapists who treated me ever actually diagnosed the problem. Everyone who treated me was acutely aware of my symptoms and I was given umpteen different treatment plans. But nobody really knew what in the world they were treating. And neither did I.
One of the last straws was when one doctor tried to imply the pain I was feeling was “imagined” and that maybe I would be better off seeing a psychiatrist. But at least that doctor didn’t try to set up a treatment plan!
But the question then became, what more was there to do?
Use Your Intuition
Time and time again I have heard so many people say they had a gut feeling their issue originated in X, Y or Z origin of their body. For me, I knew my problem was in the hip joint. I don’t know why I allowed so many people to let me think otherwise, but that’s what happened.
Once you think you have identified the origin of your problem, you can work on finding a specialist who can provide a diagnosis. For me, I knew I needed an orthopedic surgeon. The ironic thing is, I had NO intention of undergoing hip surgery. I just wanted to know what the problem was because in the back of my mind I actually thought I would be able to devise my own alternative treatment plan using my fitness and nutrition background. My thinking was definitely a bit “skewed” but anyway, that’s what I thought at the time.
What to do next?
Avoid the Wrong Diagnosis in the First Place
If you want optimal health care and optimal health there is simply no way around it: you absolutely must become your own health care advocate. That means researching like crazy to find out who the specialists are. And you have to remember, there is no doctor on earth who will care as much about your personal pain as you and your family. This may sound awfully harsh, but coming from a doctor’s wife I know the strains doctors are under these days and I also know doctors have their own personal lives filled with their own personal problems. The sad reality is, there just aren’t enough hours in the day for the typical doctor to spend researching and learning about all the different congenital disorders, diseases, and conditions that plague people. You truly have to take your health into your own hands and take the proper steps to achieve a diagnosis.
Once you obtain the right diagnosis (and trust me, you will know when you’ve gotten to a “super specialist”), the next step is to decide whether you want to get a second opinion. After that you need to research everything you can about treatment options. Make sure you understand the risk / benefit ratio of whatever the treatment option might be. And if your issue is an orthopedic one like mine, realize that a full recovery is going to take an enormous amount of self-driven rehab and time. Having realistic expectations (which I admit, I most definitely did NOT have when I underwent my surgery), is essential if you want to keep your head in the game during recovery.
The photos taken below of my leg were taken right after the surgery. I was in so much excruciating pain that I couldn’t even fathom how I would ever walk normally again, much less dance, jog, ski or do any other activity that I had once loved. It took me six months just to walk again, during which time I sank into a terrible depression. I spent hours upon hours doing daily physical therapy and months would go by with barely any improvement. To be honest, I was in such a low place in my life that it really was hard to think positively, but my husband was a Saint and day after day he reassured me that if I kept working at it I would eventually get better. I managed to hang on to a sliver of hope and I truly worked harder on rehab than I have ever worked in my life. Ultimately it DID pay off.
Today my hip pain is gone, I can ski, dance and run (not just jog, but run!) once again. And less than a year after the surgery I filmed my first fitness video, Full Fitness Fusion. Filming a workout DVD was something I had dreamed of doing ever since I was a little girl watching my mom do Jane Fonda. I used to think, “I bet I could do that!” I just would have never thought I would have had to have my leg twisted (literally) in order to do it. But I will forever be thankful to my husband for pushing me to get to a “super specialist” and to my surgeon, Dr. Robert Bully for doing the impossible. My life would not be the same without these two doctors.
P.S. What are the Most Commonly Misdiagnosed Illnesses?
Struggling to find a diagnosis? Learn the most commonly misdiagnosed illnesses HERE.