AT 26 years, she measures 7 feet 8 inches and weighs about 130 kilograms, with a shoe size of 15-16. Four months after making it to the Guinness Book of World Records as the world’s tallest woman, the young woman (name withheld on doctors’ request) from South Dinajpur district in West Bengal underwent a surgery at the All India Institute of Medical Sciences (AIIMS) earlier this month, for removal of a “giant” brain tumour which was responsible for secretion of growth hormones up to 16-18 times above the normal level for the last 15 years.
“She developed a tumour known as pituitary adenoma when she was about 10 years old. By the time she was 15, she was already six feet tall. She became a spectacle in her village and was confined to her home by her parents who are illiterate and poor. She came to us about six weeks ago. Scans showed this huge tumour, about four centimetres in size, at the base and middle of her skull,” said Dr Ashish Suri, professor of neurosurgery at AIIMS.
Her blood tests showed her growth hormone level was over 80 mIU/dl, against the normal level of 0-5 mIU/dl. “Her urine output was 6.5-7 litres per day, as compared to the normal output of 1-2 litres. We realised this was a classic diagnosis of gigantism, and the only option was to remove the tumour surgically,” Dr Suri said.
Doctors said if the tumour continued to develop after her growth was complete, she would grow in width. “There are many patients diagnosed with such tumours at a later age and they have a condition called Acromegaly where the hands, feet and face grow broader. In this case, she had it when she was very young, which compounded the symptoms… all her organs were enlarged,” said Dr Nikhil Tandon, professor of endocrinology at AIIMS.
He explained that since the pituitary gland is the “master of the endocrine orchestra”, the woman also developed several other problems. “All her organs are enlarged. Since the tumour was in the pituitary gland, hormone levels were abnormal… she has not reached puberty yet, her blood pressure is extremely high, she runs the risk of developing heart complications and has developed diabetes. Her calcium levels are really low… that coupled with the effect of being confined to bed has resulted in multiple fractures in her vertebrae, which made her spine curved,” said Dr Tandon.
The decision to operate came with many problems. “Our maximum bed size is six feet, both in the operation theatre and ICU, so positioning her appropriately for surgery was a big problem. Her head size was enlarged, which made access of the tumour with our instruments like endoscopes extremely difficult. Anesthetising her would be a problem with her head size, since we did not have endotracheal tubes of her head size, and she had difficulty lying down with the multiple fractures in her spine,” said Dr P K Bithal, head of neuro-anesthesiology at AIIMS.
But if the tumour was not removed soon, she had an imminent risk of blindness as the tumour was pressing on her optic nerves. So the operation was carried out on January 16, with some innovations.
In the operation theatre, an additional trolley was placed alongside the bed for the endoscopic skull-base endonasal surgery. “The tumour was difficult to access through her head since it was at the base of the skull, so we inserted an endoscope through one nostril. The standard 18-cm endoscope was not long enough so we got a 30-cm one instead. This is an instrument with a camera that projects the surgery on a screen. The instruments used in the surgery were inserted through the other nostril,” explained Dr Suri.
“Our original plan to use local blocks instead of general anesthesia failed because she was becoming too violent. There was problems with her positioning due to the fractures in her spine… But thankfully, we managed to maintain her airway,” said Dr Bithal.
Due to the vascular nature of the tumour, there was a lot of bleeding. “It is a wonder that despite all these problems, we managed almost complete excision of the tumour. In such surgeries there cannot be a second opportunity to operate,” said Dr Suri.
In the ICU, a two-feet long footboard was attached to the bed. Simple things like measuring her blood pressure became a problem since the normal cuff did not fit around her arm, so doctors opted for one that is normally used around the thighs.
Doctors said only 1-2 per cent of the tumour could not be removed due to its proximity to critical blood vessels in the brain. “After three months, we will do another MRI to evaluate the residual tumour. We will have to decide if we can treat that with radiation or chemotherapy. She will also be started on hormone replacement therapy,” said Dr Tandon. Meanwhile, her serum growth hormone level has come down from 80 mIU/dl to 15 mIU/dl.
Besides medical problems, doctors said the woman also faces a psychosocial crisis that must be addressed. “She has been confined to her house for the major part of her life, her father came to the hospital for a few days when she was admitted. She was taken to the SSKM Hospital in Kolkata last year, but her parents took her back. An old teacher from her area is the only one she communicates with,” said Dr Suri.
When she was first brought to AIIMS, it took doctors three-four weeks to establish a line of communication with her. “She has been silent for so long… it will take us a long time to ensure her complete recovery,” said Dr Tandon.