A diagnosis, a patient’s shoes, and a journey of a hundred questions
Navigating the US healthcare system can be a harrowing experience for small and acute episodes of care, leave aside a three-year long-drawn-out diagnosis and remediation plan. Couple that with the backdrop of the COVID-19 pandemic and living in the NYC tri-state area, the epicenter of the reported cases explosion in March 2020, my journey as a patient for interventional care is one that begs retelling. Not just because it’s a miracle of modern medicine that I can walk pain-free with bi-lateral hip replacements, but because it’s a story of what doctors, frontline workers and life scientists do every day to ensure that you and I have treatment options. They ensure we are informed and educated about these and have an ability to secure the best care we can afford, regardless of the political and economic storms brewing around them.
I am what you would classify a ‘highly privileged’ and ‘hyper-informed’ patient, partly because I aspired to be a medical doctor at some stage of my schooling years, was generally a top scoring biology student, and partly because I have worked in three niches of healthcare (devices, pharmaceuticals, and provider side) over a career spanning two decades with a specialization in data and analytics. This has given me a perspective like few others when it comes to seeking care and cures for me and my loved ones.
My journey began in October 2018 after I finished my first milestone hike to Mount Kilimanjaro. The nine months of training before the summit attempt and the day one grueling hike without poles (largely because of my over confidence) cost me what may have been an additional 3-4 years of life out of my biological hips and labrum. Unbeknownst to me at the time, I had started a steep downward spiral in my physical and mental health. In 2018 December a formal digital X-Ray of my hips confirmed severe early onset osteoarthritis in both my acetabular and femoral bones. An MRI nine months later confirmed moderate to severe developmental hip dysplasia (DDH also referenced as congenital hip dislocation) in both hips with several deep lacerations in both my labrums and near -zero cartilage on both femur heads. The next 4 years took me through 4 rounds of 4-month long physiotherapy sessions, 4 specialist visits, 2 rounds of severe clinical depression and 2 total hip arthroplasties (THAs) before traversing successfully from a full diagnosis to a corrective interventional procedure. What I recap below are key lessons learnt as I transition back to playing contributor to the eco-system of healthcare role, after having walked it in a patient’s shoes for the first time in my adult life:
1.??????Incomplete understanding of the causes of congenital hip dysplasia.
Even with modern medicine offered neonatal monitoring, and quality literature available at the click of a button for most women that are pregnant, we don’t quite fully understand what causes congenital hip dysplasia. The US and global average of DDH incidence is about 1 in 1000 live births. Neonatal ultrasound-based screening does appear to increase the rate of detection significantly and arrests disease severity with timely intervention. There is an observed significant positive correlation with a female gendered births, breech position babies, high birth weight infants, first-time pregnancies and more than recommended maternal weight gain through the pregnancy. In 1981 born in All India Institute of Medical Science (AIMS), one of India’s most elite and prestigious medical institutions at the time, I was accurately diagnosed at day 30 after birth. I was the ‘biggest baby’ in the neonatal intensive care unit (NIC-U) they had ever seen weighing 12 lbs. at birth from a C-section and my mother had gained an alarming 60lbs (for her meager 5 feet frame and was not diagnosed with gestational diabetes) during her 10-month pregnancy.
2.??????Early detection, combined with consistent and regular pediatric monitoring is crucial.
While most cases of DDH today are caught with routine pediatric visits within twenty-four months of a child’s life, early detection is the biggest factor in ensuring that surgical intervention in childhood or adulthood is not necessitated due to developmental biomechanical deficits. My own hips were mechanically braced in the second month of my life and were kept braced through month six. The pediatric orthopedic consult at the end of the bracing period at AIMS recommended that I likely still needed surgery to correct the remaining dysplasia presentation, but due to the lack of available counseling and enough publicly available literature at the time, my first-time parents in their twenties chose to not heed the medical advice. Following this lapse, I missed a big developmental milestone in the first year going from sitting and rocking on my fours to straight out walking in month fifteen. I never crawled! Even to this day sadly no routine pediatric visits are the unfortunate reality for a lot of children around the world.
3.??????Consistent parental education, clear and portable medical records are a must-have.
Uncorrected DDH causes early onset osteoarthritis, hip labral tears, and dislocated/unstable joints. The lack of my parent’s ability to capture and share this pediatric medical record and equip me as a young adult with a baseline understanding on my birth related health deficits resulted in my twenties where I probably overused my already impaired hips between my high-intensity high-impact workout routines, 5K and 10K outdoor runs, kickboxing, bootcamps and plyometric routines. By the time I attempted my mountaineering bucket-list goal of trekking Kilimanjaro, my hips were probably running on their last lease of life. Modern day electronic medical records are a big step in the right direction, but still require portability across geographic boundaries and inter-operability and do not substitute for patient and parental education and awareness.
4.??????Procedural medicine is more impediment than aide to outlier cases.
When you happen to be an outlier case, procedural medicine at best serves the interests of the insurer/payer of the patient involved. It is an impediment to early and quick diagnosis for not just the physician and specialists concerned but is a monumental cost for the already ailing patient to pay. There is no reason why I should have needed to wait for nine months to get a Blue Cross Blue Shield of Massachusetts (BCBS MA) covered MRI arthrogram of my two hips when I was showing signs of osteoarthritis at 38 years old, was normal BMI and probably in the best shape of my life at that time.
5.??????Primary care for initial triage works very effectively.
Among the few silver linings in my very protracted patient journey, it didn’t take more than a four-week course of a 3000mg over the counter (OTC) ibuprofen, ruling our bursitis and Rheumatoid Arthritis with a blood panel, for my internal medicine primary care doctor to refer me to Dr. Dinesh Dhanaraj, an orthopedist at Penn Medicine, Princeton Bone and Joint, Princeton, NJ.
6.??????Find a doctor that will educate you about your options.
Two visits till Dr. Dhanaraj could get me cleared and authorized for an MRI were well worth my time and effort spent. His complete transparency about my choices and the timelines to make those choices were refreshing to hear. Not only did he painstakingly help me read and understand my own X-Rays and MRI (a medical diagnostics device engineer by early training), but his ability to admit when the Surgical Head of Department there was not the most skilled in anterior hip replacements (the preferred method today due to its faster recovery, cosmesis advantages and more minimally invasive entry pathway) was truly appreciated. What perhaps was a little room left for improvement, was why I needed to be educating a forty something opposite gendered male doctor about why a thirty something year old woman is not quite at a life-stage where the aesthetics of post-surgical scarring don’t matter. I for one was not ready for a posterior scar right across both my buttock cheeks if I had options.
7.??????Personal and professional networks are critical in identifying the right experts, but most patients do not have such robust networks.
I am grateful for my network of first-, second- and third-degree connections that helped me find the two specialists in NYC that have the most surgical experience with anterior hip arthroplasty, Dr. Roy Davidovitch, the inventor of the modern anterior incision approach with the largest numbers of surgeries till date, and Dr. James Slover, the surgeon with the second highest number of procedures performed in NYC. Again, this was as easy as three phone calls for me but only because my spouse also works in healthcare and his network of practicing and researcher specialists knew how to navigate the situation. This is not how most normal people seek expert opinion. All of this happened seamlessly, while I went to two additional local NJ orthopedic consults to weigh my choices and options of arthroscopy versus total hip arthroplasty.
8.??????Consulting the lead specialist practitioner to weigh your options could be truly enlightening.
In my quest for what was starting to look like possibly three hip replacements on each hip (if I lived to an average age of 85 years), I chose to visit both the doctors before making my decision. Dr. Davidovitch was the first one that told me what I wanted to hear, “If I were at your life stage and were living with the pain you are living, I would just go for the replacement”. Perhaps because as the inventor of the procedure himself and having several DDH Olympic stage sports players on his rolodex of patients, he was very bullish about the quality of life that this could restore for me. He was the first doctor that cared to remind me that the diminished quality of life I was living with was not something I needed to live with anymore, especially when I needed to be a physically capable parent to my nine-year-old son.
9.??????Care providers need to act as champions and counsellors, leading with transparency and bias towards empowering the patient.
Dr. Slover, was a bit more guarded and very quickly confirmed the advice I had already received from four very seasoned orthopedists – corrective labral surgery was not a tenable solution for dysplastic arthritic hips. It would be like dressing up a house with a structurally unfit basement. But he chose to do what all surgeons I believe need to do, push the patient to do the deeply difficult and reflective work of assessing whether they really are at the tipping point for needing a prosthetic replacement. He also educated me on the 10% chance that I could end up with loss of sensation of touch (not function) in the area around the surgical incision (which the other doctor thought was not event worth mentioning). Happy to report that I did not fall in this 10% for either of the replacements, but his choice to in some way admitting to the element of chance that no surgeon can completely do away with, helped me make my decision of the doctor I was going to work with.
10.??Out-of-pocket costs based on insurer plan can be prohibitive, but a helpful administrative team combined with an influential payer can make all the difference.
But there is one other significant factor that contributed to my decision, and I would be remiss not to share, especially as it may influence many other patients in my shoes. The procedure based on the type of insurer plan I had and the specialists that worked with the plan, Dr. Davidovitch’s practice would be considered out-of-network. As it turned out, he would be out-of-network for most all plans except United Healthcare. If I were to use his services, my patient owed amount for all doctor’s visits pre, operative day and post would be roughly $25,000 per hip. Note however that this was something the office administrative staff was super helpful in helping me workout right after my first consultation and even offered a monthly payment plan to help cover the charges if I were unable to pay in full. UHC has been notorious in the HCP and hospital administration circles for billing nightmares, procedural medicine jails for doctors and generally poor patient procedure coverage. But not for this procedure and not with this doctor.
11.??Combining different medical modalities is critical for patient support through diagnosis through post-op recovery.
The process of exploring my options and coming to terms with when it was time to pull the trigger for interventional care took me from 2019 summer to 2020 spring. Complementary integrative medicine was my best friend through this period. Physiotherapy at Robert Wood Johnson using blood flow restriction (BFR machines made hugely popular with the recently concluded Olympics), self-designed and researched vegan/largely vegetarian and dairy-free meals for their anti-inflammatory properties and meditative yoga worked wonders for a brief period of daily relief from the pain. After years of professional life committed to advocating for digital health wearables and digital therapeutics (DT(x)) innovation and incorporation into clinical care pathways, I also started to use my Apple watch at night to monitor my quality of sleep and a myriad of pain management (Pathways Pain Relief) and food sensitivity analysis (mySymptoms) apps on my phone As could be expected it was a valuable data point in my early pain journey confirming what my tossing and turning in bed from my aching hips was already telling me, my current pain management was not working. Ashwagandha, an Indian ayurvedic herb known to have properties like Chinese ginseng and naturally occurring melatonin became my salve. Within ten days of starting a regimen (2 teaspoon in tepid 8 ounces of water), my average hours of sleep as reported by my apple watch went from 3 hours a night to 7 hours a night and brought me the much-needed bridging relief till February of 2020. This was about the time when I entered the peak of my clinically diagnosable depression (based on a self-administered online depression test). Suddenly narcotic-based pain management options like medical marijuana seemed like a ‘god sent’ and ‘an absolute yes question’ heading into the 2020 federal elections. Needless to say, there is still a need for trusted research to make this a viable and safe option for the millions of patients in the US living with debilitating chronic pain.
12.??Physician and frontline care provider burnout is a real problem and poses lingering threats post pandemic.
March 2020 the pandemic shut down the entire NYC tri-state area and NYU Langone where I was to see Dr. Slover for my procedure cancelled all elective procedures. July 2020 when I finally was able to get back in for the procedure, my same day discharge and ten-hour operative day looked like a far cry from what a normal hospital scene would look like. COVID precautions were in full swing, no visitors were allowed and the look I saw on the surgeon’s face when he came back to check on me at 6:30pm for my discharge, made the horrors of the toll the pandemic had taken on all front-line workers all too real. Even behind his masked and shielded face his eyes looked worn out and he looked more like the major surgery patient than I. Physician burn out was at a peak in this country even before the pandemic, but the cataclysmic levels it has taken on in the two years of ensuring battle with the COVID pandemic is likely to continue to take a toll on several front-line fighters and their career choices in the near to medium term.
13.??Insufficient study of early age hip replacements means that post-operative recovery timelines and expectations are neither accurate nor reflective.
My recovery path post-operative was a far cry from my what was detailed in the after-care plan laid out and made digitally available through the NYU patient portal. I chalk this up to lack of enough data and follow-up studies on early age hip replacement patients. The average age for hip arthroplasty today is between 60-62 years and I went into the procedure twenty-two years younger and in reasonably good physical strength and shape. I did not take the recommended short-term disability of six weeks as advised by the surgeon, did not spend the greater portion of my day sleeping after day two, was opioid (Tramadol) free after 3 doses and had enough pain relief from high dose acetaminophen and meloxicam combination treatment, walking with just one crutch by day three and was largely crutch free by day seven. I was also online and working (out of choice not necessity) by day eight. I don’t think I was a better than normal outcome, just significantly younger than the age cohort on which there is documented research and post-operative recovery regimens designed today. I know this to be a fact because I then learnt of my hairdresser’s spouse, two years older than myself who experienced a very similar recovery path to mine. And mind you my second one in April 2021 was a very similar recovery path with a day sooner on most functional movement milestones given this one was my dominant right-side hip. At home nursing and physical therapy offered by Robert Wood Johnson in partnership with NYU Langone were probably the most meaningful extensions to my at-home recovery and care regimen. Also noteworthy was the value of the NYU patient portal with a 24hr turnaround on response from my surgeon for any critical questions and abnormal symptoms. I used this at least twice during the recovery period with both my hips and is a big value-added patient service in my opinion.
14.??Dearth of device manufacturing data is concerning for patients considering complex procedures.
My prosthesis in both hips is a combination prosthesis assembly of a ceramic ball, a plastic cup and titanium stem by Smith and Nephew called the PolarStem. Much to my consternation the brand, type and materials information of my prosthesis was not something that was deemed necessary by my surgeon to share with me. Perhaps to some this is too much information, but for those that work in the industry and have a medical devices background, medical device materials and use safety is not something you take lightly and don’t do your own research and understanding about. Reference the Netflix 2018 documentary ‘The Bleeding Edge’ for the continuing loopholes in the FDA monitored approval of 510K filed medical devices in the US. Also noteworthy is that titanium is almost always alloyed with other materials when in use for medical prosthetic assemblies and I could not get a full materials sheet disclosure from Smith and Nephew regarding what was alloyed in my prosthesis stem insert.
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With my bionic transformation complete, I conclude this piece with a toast raised to the doctors and healthcare front-line workers that served selflessly and continue to do so in the face of a global pandemic the world over.
In my humble opinion of a ‘privileged patient’, our healthcare system in the US has a long way to go in the practice of seamless patient care, whether it be on account of six non-portable non-interoperable digital records from primary care to three major hospital systems between diagnosis, surgery and rehab, to the promise of telehealth which does not work for all healthcare specialties or to surgical robots that may one day replace highly skilled surgical human hands.
To my healthcare partner in arms, there is more to do and patients waiting for innovations across multiple frontiers. To my fellow patients, remember you know your body best and will always be your best health advocate.
Acknowledgements:
I will take a moment more to highlight the bright spots and my pillars of strength in my four-year journey back to normalcy:
-?????????The expert online consult on LinkedIn from Dr. Ira Kirschenbaum, Chair Orthopaedics at BronxCare Health System, in the days leading up to my first surgery.
-?????????My manager and mentor Krisha Cheriath at BMS for allowing me to seek timely medical help and intervention and prioritizing health over work.
-?????????My work team at BMS IDM/EIM that ensured I could take time off from work during the surgery.
-?????????My spouse of sixteen and a half years DB Kartik and the rockstar friend, philosopher, shrink and nurse he has been through the years.
Disclaimer:
The views and opinions expressed is this piece are solely my own and have no bearing on my employers’ past, present or future. Health information disclosed in this article presents no HIPAA violations on part of any of my healthcare providers, insurers and/or my employers.
References:
Understanding DDH:
Different surgical entry options and studied life of a hip replacement today:
Risks with use of materials in prosthetics in-use today:
1.??????https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6384837/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7006538/
Chronic Pain Management solutions:
New Materials Research for use in Total Hip Arthroplasty / Replacement: