It was the winter of 1991. I remember jumping from my school bus window (don’t ask me why) and a day later experiencing some pain in my right hip and lower back. I thought that the pain might be due to a muscle pull and ignored it. It went away in a couple of days.
I was back to leading the life of a normal 13-year-old boy, but the pain returned within a fortnight, and this time it was excruciating. It seemed that my right hip joint was frozen and I couldn’t put any weight on it while walking. We consulted an orthopaedic doctor who wasn’t sure of the reason for the pain. But after looking at x-rays, he put traction on my leg. He wanted to pull out some fluid from the thigh and groin area for diagnosis (at my home, and not at a lab) but then we never heard back from him.
Growing Up With A Misdiagnosis
As the pain subsided in the following weeks, I rejoined school and went back to doing my normal chores. In the winter of 1992, I again felt that pain and this time visited a hospital. I was admitted there for 15 days and after another set of x-rays and a Mantoux test, I was told that I might have Bone TB. So I was put on medication—some injections every 15 days for two months and nonsteroidal anti-inflammatory drugs).
Over the next seven or eight years, I met five different doctors, was admitted to two different hospitals, had numerous x-rays, tests for bone density, bone culture, bone marrow aspiration, Mantoux test, CT scans, and an MRI done, but nothing was conclusive. I didn’t find out the reason for my pain and loss of movement in the right hip. But all this while I was given medicines (NSAIDs) for Bone TB. I even tried Homeopathy, Ayurveda, and Acupressure, but nothing worked.
The journey from puberty to adulthood was one I’d like to forget. For years I was in pain, moving inside the house by holding walls or doors. I would suddenly stop because of excruciating pain that ran down from my spine to my foot. Sitting in the balcony and watching my friends play, I wondered if I would ever experience that feeling again. By the time I turned 17, I had to give up playing cricket, football, and cycling. Whenever my friends asked me to come to play or hang out, I always made an excuse as it would take me several minutes to walk out of my home and climb down the stairs. I was confined to my home and gradually lost touch with most of my friends.
Ankylosing Spondylitis not only impacted me physically but mentally and emotionally too.
A Diagnosis: Ankylosing Spondylitis
One thing I constantly heard from my doctors and everyone who visited me was “You are too young for all this”. But I wasn’t feeling like a normal young lad, I felt like an old man. I was so frustrated with the constant pain, loneliness, and always being home.
It was the turn of the millennium and finally, one doctor asked me to go for an HLA B27 test. I was finally diagnosed with Ankylosing Spondylitis, a disease that has no known causes and no cure, too. It targets the sacroiliac joints in adolescence and spreads to the spine, neck, and chest. As the inflammation spreads, new bones form as a way to repair the damage resulting in the hip joints and spine fusing together.
I was happy that I finally knew what I was suffering from, but sad that the diagnosis came about nine years late. By now, my right hip joint and spine were fused and I had a stooped posture known as Kyphosis. My doctor suggested a hip replacement surgery was my only option.
Surgery was a big decision and I was hesitant. My family and I met a couple more doctors who advised us against the surgery because of the risks involved as total hip replacement (THR) wasn’t popular and successful at that time in India.
I went back to the doctor who had suggested surgery in the first place and he categorically stated that due to misdiagnosis and having NSAIDs and Bone TB medicines for so many years, he can’t put me on any medicine and surgery was the only option. I was informed that if I decide not to go for surgery then it’s possible that my left hip joint will also get fused as it was bearing most of my body’s weight.
Hip Replacement Surgery
Come 2006-07, my right hip joint was totally fused, however the left still had some movement. By 2008, a lot of surgeons had started doing hip replacement surgeries in India. We did our research and landed at the clinic of one of India’s most renowned hip replacement specialists.
He assured us that THR was safe, and even gave us references for work he had done. We spoke to a couple of his patients and a month later, I had my right hip replacement surgery done. There were more complications than a normal surgery, but by God’s grace I was in good hands, and the surgery was successful. A year later I was operated on, this time on the left side. Both surgeries were followed by months of physiotherapy.
Though these surgeries gave my life a new perspective, and I was almost 90% mobile, a common drawback was the shortening of the leg. Due to extreme wear and tear in my right hip, Doctors had to put an extended hip implant and as a result, my right leg was shorter than the left by an inch. I used padding inside my shoe to minimise that impact. And there I was, doing stuff that I never thought I would be able to do again, like walking a long distance, driving, para-sailing, para-gliding, and more.
Revision Surgery And A Near-Death Experience
By 2017, I began to feel discomfort in my right hip-joint. I consulted a doctor who advised me to visit India’s premier medical institution, AIIMS. I met a team of senior doctors and a medical enthusiast, who, after carefully examining my case, suggested doing a revision surgery. For this, they planned to make a 3D Titanium cage to compensate for the loss of bones from my previous surgery. It took them almost nine months (multiple prints, prototypes, amendments, and improvements) to make a replica of my pelvic bone in Titanium, and there I was lying on the operating table again. It was India’s first 3D hip replacement surgery and I was both excited and nervous about being a part of it.
It was a team of about a dozen multi-disciplinary doctors who operated on me. After cutting me open, at first, they thought of not putting in the new joint as the nerves and veins inside my thigh and hip region were badly tangled and it was risky to cut any of them. But they were committed to giving me a better life and they decided to go ahead with the surgery.
For the next 12 hours, the doctors struggled but did an amazing job in not only keeping me alive but also deciding against amputating my leg, as my iliac vein had been badly severed during surgery. After a marathon 9-hour surgery, they had almost stitched me back but had to cut open again due to a thrombus (blood clots) in my leg and lack of blood flow. It took them another three hours to remove the blood clots and yet again save me from an amputation.
It surely wasn’t Doctors but Angels sent by God to work that day.
Life In My 40s
Life has been a roller coaster since the surgery. At times I am myself amazed that I made it through a 12-hour surgery, and a day and half of induced coma, ventilator, 12 units of blood (more than what an average human body has), 6 units of plasma, countless IV drips, injections, medicines, more than 50 stitches, and a total of 27 days in hospital!
It’s almost been 11 months since I had my surgery. I am still walking with a forearm crutch and have another thrombus (blood clot) in the right leg for which I am on medication.
Since I am single, I don’t have to worry about a girlfriend or spouse or kids.
Also, my employers couldn’t give me more leaves, so I had no option but to leave my job and am currently unemployed. ना नौकरी ना छोकरी (No job, no girl)!
My ordeal has taught me that when you are successful, independent, have money, and time, there are so many friends by your side. But when you lose a job, your money, and are dependent, everyone disappears emotionally and physically.
While I was in the hospital, I remember sending a text to almost everyone in my phone book a night before my surgery. Only about half of them replied and wished me luck and prayed for my well being. But the remaining?
Everyone becomes so engrossed in their lives (and possibly new friends). Very few are even bothered about you. But then again, my friend circle has shrunk in size. But it has increased in value, and I love all of the people in my life.
Life can continue throwing random stuff at me but I will live with my chin up and smile. Even though Ankylosing Spondylitis continues to be the pain in my ass, I am too young to give up and die.
Featured image for representation only. Source: Pexels.
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