My Story : A pain in the Ass - Ankylosing Spondylitis

Hi All, I am Amit from India

(Mis)Diagnosis and growing up

It was winters of 1991, I remember jumping from my school bus window (dont 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 as it went away in couple of days. I was back leading life like a normal 13 year old boy but for the pain to return in a fortnight and this time it was excrutiating and it seemed that my right hip joint was frozen as I couldnt put any weight on it while walking. We consulted an Orthopaedic doctor who though wasnt sure of the reason for pain but after looking at x-rays, put a traction on my leg. He wanted to pull out some fluid from my thigh/groin area (at my home only and not at a lab) for diagnosis but then we never heard back from him.

As the pain subsided in weeks to come, i rejoined school and was doing normal chores. In the winters of 1992, i again felt that pain and this time visited a hospital. I was admitted there for good 15 days and after another set of x-rays and a Mantoux test, i was told that I might have Bone TB and was put on medication (some injections every 15 days for 2 months and NSAIDs).

Over the next 7-8 years, i met 4-5 different doctors, was admitted to 2 different hospitals, had numerous x-rays, bone density, bone culture, bone marrow aspiration, Mantoux test, CT scans and an MRI done but nothing was conclusive to tell me the reason of my pain and loss of movement in right hip but all this while i was given medicines (NSAIDs) for Bone TB. I even tried Homeopathy, Ayurveda, Accupressure but nothing worked.

The journey from puberty to adulthood was one i’d like to forget. For years I was in pain, moving inside house by holding walls or doors and would suddenly stop coz of excrutiating pain that ran down from my spine till my foot. Sitting in the balcony and watching my friends play, i wondered if i will ever experience that feeling again. By the time i turned 16-17, i had to give up playing cricket, football and cycling. Whenever my friends asked me to come play or hangout, i always made an excuse or other as it will take me minutes to walk out of 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.

Diagnosis and the way forward

One thing I constantly heard from my Doctors and everyone who visited me was “You are too young for all this” but during all this while i wasnt feeling like a normal young lad but an old man. I was too frustrated with the constant pain, loneliness and being home.

It was the turn of millenium and finally one Doctor asked me to go for 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 spine, neck and chest. As the inflammation spreads, new bones forms as a way to repair the damage resulting in hip joints and spine to fuse together.

I was happy that finally i knew what i was suffering from but sad that the diagnosis came a little late by 8-9 years. 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 as the only option.

To go for a surgery or not was a big decision and I was hesitant. Me and my family met couple of more doctors who advised us against the surgery because of the risks involved as THRs werent popular and successful at that time in India.

I went back to the Doctor who advised me of surgery in the first place and he categorically stated that due to mis-diagnosis and having NSAIDs and Bone TB medicines for almost 7-8 years, he cant put me on any medicine and surgery was the only option. I was informed that if I decide not to go for surgery than its 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 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 renowned hip replacement specialist. He assured us that its safe to go for a THR and even gave us references of work he had done. We spoke to couple of his patients and a month later, I had my right hip replacement surgery done which though got way complicated than a normal one but by God’s grace I was in good hands and surgery was successful. An year later i was operated on the left one. Both surgeries were followed with months of physiotherapy.

Though these surgeries gave my life a new perspective and i was almost 90% mobile however a common drawback of these surgeries is shortening of 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 did stuff that i never thought i will be able to do like walking long distance, driving, para-sailing, para-gliding, etc.

Revision surgery and a near death experience

By 2017 i was once again feeling dis-comfort in my right hip joint. I consulted a doctor near my place 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 that they can do a revision surgery and will make a 3D Titanium cage to compensate the loss of bones from previous surgery. It took them almost 9 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 being a part of it.

It was a team of 10-12 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/hip region were badly tangled and it was risky to cut any of them but then they had a resolute to give me a better life and they decided to go ahead with the surgery. For the next 12 hours doctors struggled but did an amazing job in not only keeping me alive but also decided against amputating my leg as my illiac vein got badly severed during surgery. After a marathon 9 hour surgery, they had almost stitched me back but had to cut open again due to thrombus (blood clots) in my leg and lack of blood flow, it took them another 3 hours to remove the blood clots and yet again save me from an amputation.

*It surely wasnt Doctors but God sent Angels at work that day

Life in 40s

Life has been a roller coster since the surgery, at times I am myself amazed that I made through a 12 hour surgery, day and half of induced coma, ventilator, 12 units of blood (more than what an average human body has), 6 units of plazma, countless IV drips, injections, medicines, more than 50 stitches and 27 days in hospital.

Its almost 11 months that i had my surgery, am still walking with a forearm crutch and have another thrombus (blood clot) in right leg for which i am on medication.

Though i am single so dont have to worry about a girlfriend/spouse and/or kid(s) but who wouldnt want a family.

Also my employers couldnt give me more leaves so i had no option but to leave my job and am currently unemployed. ना नौकरी ना छोकरी !!! Lol.

My tough times have taught me that when you are successful, independent, have money, time - there are so many friends but when you lose a job, money and are dependent - everyone disappears emotionally and physically.

While i was in hospital, I remember sending a text to almost everyone in my phone book a night before my surgery, probably half of them replied and wished me luck and prayed for my well being. The remaining ???

Everyone becomes so engrossed in their life (and possibly new friends) to even be bothered about you but then again, my friend circle has shrunk in size but has increased in value and i love them all. Life can continue throwing random stuff at me but i will live with my chin up and smile. Afterall I am too young to have Hip replacements or Die !!!

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