Support needed to help vein of galen malformation patients

Support needed to help vein of galen malformation patients

Maria Endah Hulupi, The Jakarta Post, Jakarta

For Ina, a teenage girl from a small town in Bengkulu, her
headaches and worsening vision have been very annoying. Her
swollen left eye looks like it will pop out of its socket.

Acting on suggestions from relatives to visit a local
ophthalmologist, Ina was shocked when she was diagnosed as having
a huge tumor in her left eye. But after a series of more thorough
examinations, the doctor found out she had a swollen vein in her
brain, right behind her eyes.

Ina was later transferred to the Cipto Mangunkusumo General
Hospital, Central Jakarta, where neurologists confirmed she
suffered from vein of galen malformation. It means the
accumulation of blood in her brain had developed into a mass the
size of a tiny ball, further pushing her left eye outward. Later
on, she was transferred to undergo embolization procedure at the
Siloam Gleneagles hospital in Karawaci, Tangerang.

"She was sent here (to Gleneagles) because a foundation has
agreed financially to support the treatment. We couldn't afford
to pay for the medical services," said Nilveda, a distant
relative of Ina, almost in tears.

Ina is lucky to have received financial assistance from the
National Brain Foundation (NBF). She is one of only around 100
patients from a low-income family who has received such treatment
from both the foundation and the hospital. Data from the hospital
shows that all treatment has been successful.

Vein of galen malformation is a very rare condition in
Indonesia. The illness affects blood vessels in the brain. Data
show this problem affects mostly babies and children, with an
estimated incidence of 10 to 12 babies in 100,000 births.

"It's an abnormality that occurs during embryonic development
that will cause abnormal communications between arteries and
veins in the brain. It results in an accumulation of blood,
leading to swollen blood vessels in the brain," said Prijo
Sidipratomo from the Gleneagles' interventional radiology
department.

New-born babies with vein of galen malformations can show
symptoms of heart failure due to this abnormal situation.
Children with this abnormality develop hydrocephalus (enlarged
head) and seizure. Older children and adults also complain of
severe headache and vomiting.

Diagnosis may be confirmed by CT (computer-assisted) scan,
digital subtraction angiography (DSA) and MRI (magnetic resonance
imaging).

"It can also be detected while the baby is still in the womb,"
Prijo said.

As for treatment, he said the illness could be treated by
embolization procedure as it usually occurs deep in the brain,
making brain surgery a risky treatment.

The two-hour embolization procedure is performed by inserting
a guide catheter into the femoral artery in the leg. The
neurologist will carefully guide the catheter to the shunt area,
where a glue-like substance, hystoacryl blue, is released to shut
off the blood vessels that feed the swollen vein.

"During the procedure the patient is awake but they won't feel
any pain," said Jacub Pandelaki also from the Gleneagles'
interventional radiology department.

Some cases, Jacub said, require several embolization
procedures to ensure that abnormal communications are shut off.

"But they must be performed over a period of time to prevent
complications," he added.

Jaya Suprana, a jamu (traditional herbal medicine) businessman
and talkshow host, attended the briefing and stressed the need
for public support for patients on low incomes to have access to
proper brain intervention.

"What the country needs is health insurance to enable all
citizens to have equal rights of access to medical treatment;
until such time public (financial) support is needed to help
foundations like NBF," said Jaya.

"Immediate intervention is needed to end the patients'
suffering and save their lives. Otherwise, they would only have
months to live," said Eka Wahjoepramono, chairman of NBF.

Financial support can be channeled to Lippo Bank, Siloam
Gleneagles hospital branch, account number 579-30-88888-0 a/n
National Siloam Brain Foundation, Jl. Siloam No. 6, Lippo
Karawaci, Tangerang.