A new member who is in a dilemma

[Guest guest]

Hello,

I'm a new member who live in Singapore. My name is Margaret and I

have a little boy, , who is 32 months old.

My son has Down's syndrome and was borned with imperforate anus,

hypospadia and ASD (hole in the heart). I first came across the

term " Tethered Cord " where I was researching about imperforate anus.

I read that children with anorectal malformation may have tethered

cord. Thus, I asked my paediatric surgeon to refer my son to a

neurosurgeon.

As does not have any of the tell-tale sign (except constipation

which may also be a problem associated with his imperforated anus),

the neurosurgeon felt that he is unlikely to have TC. However, the

neurosurgeon added that a MRI would be needed for a more conclusive

diagnosis.

My husband & I put the idea of a MRI on hold until a situation

(unrelated to tethered cord) arose recently which called for a MRI.

The neurosurgeon recommended that the MRI to include the spine as

well.

Here's our dilemma - 's spinal cord ends slightly below L3 but it

moves freely and there's no fatty filum. The neurosurgeon told us

that our boy is in the " grey area " . He cannot say for sure if

has tethered cord or not. He can do a surgery to de-tether 's

spinal cord as a preventive measure if we want. Given a " 50% yes &

50% no " situation, my husband & I are at a loss. On one hand, we do

not wish to subject our son to an unnecessary surgery (if he happens

to be one of those people with normal low-lying spinal cord). On the

other hand, we understand the serious problems that tethered cord can

cause.

We also do not have the " luxury " to seek for a second medical opinion

for 2 reasons - (1) we do not have access to 's MRI film and (2)

the current neurosurgeon that is seeing is one of the best in my

country.

Kindly share your opinion/view if you are in our shoes.

Thanks,

Margaret