Xinhua Hospital surgeons straighten 14-year-old's spine

Cai Wenjun
Indian boy with curvature of the spine caused by a rare disease highlighted by singer Céline Dion recovers after surgery that doctors in other countries had deemed too risky.
Cai Wenjun
Xinhua Hospital surgeons straighten 14-year-old's spine
Ti Gong

The 14-year-old Indian boy is able to walk properly after surgery at Xinhua Hospital.

Doctors at Xinhua Hospital have announced the success of surgery on a 14-year-old Indian boy with a rare disease causing extreme curvature of the spine. He can now stand and sit straight and walk properly, with the quality of his life much improved.

The boy suffered a disease called progressive encephalomyelitis with rigidity and myoclonus (PERM), a subtype of stiff-person syndrome. It is characterized by brainstem symptoms, muscle stiffness, breathing issues and involuntary dysfunction.

Stiff-person syndrome became widely known after popular singer Céline Dion said she had been diagnosed with the disease, a rare and incurable neurological condition that causes severe muscle spasms and stiffening in the limbs.

The boy started to show symptoms like limb tremors and skin hyperalgesia after a cold and fever in 2020 and was diagnosed with PERM in India.

Treatment failed to control his condition. His spine became more curved, causing him to lose his balance and impacting his breathing.

The family took him to hospitals in India and in the US, UK and Singapore, but he was turned down as surgery posed a huge risk.

Xinhua Hospital surgeons straighten 14-year-old's spine
Ti Gong

The CT scan of the boy before surgery.

Xinhua Hospital surgeons straighten 14-year-old's spine
Ti Gong

The CT scan after surgery.

The boy and his family came to Shanghai's Xinhua Hospital in May last year for consultation and the possibility of surgery to reduce the boy's suffering.

Dr Yang Junlin checked the boy's condition and came up with a detailed treatment plan.

After 5-month traction treatment to restore the boy's respiration function and nutrition therapy to reduce surgery risks, the boy finally underwent surgery on January 9.

The operation, which lasted seven hours and only required 900 milliliters of blood, was a success.

After post-surgery rehabilitation, the spine's side bend was reduced from 162 degrees to 38 degrees and backward protrusion improved from 109 to 36 degrees.

The boy's heart and lung function also improved. His height also increased from 138 to 162 centimeters.

Xinhua Hospital surgeons straighten 14-year-old's spine
Ti Gong

The Indian boy and his family have their picture taken with Xinhua Hospital medics to express their gratitude.


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