For 13 years, 15-year old Jigna Nayi was considered a hunchback because of a misdiagnosis in her early years. And it is only over the last year that she was diagnosed with a condition called kyphosis, an exaggerated, forward rounding of the upper back. This happens because of weakness and malformation of the spine. She was prepped for a corrective surgery and is now not only free of deformity but can walk tall for the first time in her life.
Nemabhai Nayi (34), Jigna’s father, says the family had first consulted private doctors at Dhanera and Tharad when Jigna was just two years old. They put her on tuberculosis medication without conducting any tests as tuberculosis in the spine is usually believed to cause a hunchback. “Eventually, after a few years of treatment, they stopped the medication as Jigna was in no apparent distress or pain,” says Nemabhai.
Now recuperating with a back brace for guided support, Jigna had an eight-hour surgery that saw her lose up to a litre of blood. Dr JV Modi, the Spine surgeon and Orthopedic at Ahmedabad Civil Operation, who operated on her, says diagnosis of kyphosis can be confusing for a non-specialist. “There can be congenital kyphosis, postural kyphosis (due to posture) or TB, all of which affect the strength of the spine. Though she was treated for TB in her childhood, there is no clinical proof that she had TB. A TB of the spine can cause a deformity in the range of 10 to 15 degrees. She was prescribed medicines for two months, which was not per protocol. We do see an issue of misdiagnosis in smaller towns as awareness about kyphosis is extremely low,” says Dr Modi.
Jigna, who belongs to Morthal village in Banaskantha district of Gujarat, would have reconciled to her condition had she not suffered an acute pain in her hip and back about a year ago, soon after she had appeared for her class X examination. Such was her misery that she could not sit in the classroom for 10 minutes. That’s when her father started doing the rounds of doctors a second time. This time, doctors at Banaskantha asked him to consult orthopaedics and specialists in Ahmedabad. “None, however, gave an exact diagnosis,” says Nemabhai. Scans would show her spine at the D-12 (lowest dorsal or thoracic vertebrae) and L2 (second lumbar vertebrae) had nearly fused and bent at a little less than 90 degrees.
Literature on the incidence and prevalence of kyphosis in the Indian context is sparse although it is noted that congenital kyphosis is rare and uncommon. “As per medical assessment, I would say it was congenital in her case. Children with congenital kyphosis are born with the condition, though it may not be noticeable immediately at birth. The deformity happens when a child’s spinal column does not develop properly in the womb. The key to arresting kyphosis is early detection followed by immediate surgery for correction. In her case, the L-1 vertebrae could never develop between D12 and L2 and with age the curvature only worsened over the years, making her deformity severe. The surgery took nearly eight hours. We used a chromium-cobalt rod on one side and a titanium rod on the other. Then we held the two rods with 12 screws. If detected early, we could have taken advantage of her differential growth to correct and would not have required as intense a surgery,” says Dr Modi.
Corrective surgeries can cost nearly Rs 5-6 lakh on an average of which the implants itself costs nearly Rs 2 lakh.
Studies note that the rate of neurological complications with congenital kyphosis is about 18 per cent and can also affect functions of the lower limb, kidney and heart if the deformity is left uncorrected.
For now, Jigna’s parents are taking it step by step and are worried about ensuring a protein-rich diet as has been suggested by Dr Modi. “I suggested that they incorporate eggs as they are a quick and cheap source of protein,” says Dr Modi. Nemabhai is, however, busy counting the number of different types of pulses that can be a good substitute.