Surgery

Because diffuse intrinsic pontine gliomas (DIPG’s) are not focal mass lesions (instead woven through critical brain tissue) they are generally considered inoperable. Despite this harsh reality, there can be benefit from consultation with a neurosurgeon.

Reasons for a Neurosurgeon

1) A parent can assure themselves that these tumors are inoperable. It isn’t uncommon in the pediatric brain tumor community to hear “what is inoperable for one neurosurgeon may not be for another.” This may be true for other pediatric brain tumors but not true for DIPG’s. Second opinions can give parents confidence in the information they have been given.

2) One can discuss the option of biopsy. At this time, biopsy samples are not routinely obtained to diagnose or treat DIPG’s.

Risks-The pons is a complex, vital area of the brain where damage can be devastating. The risk can include brain bleeds, paralysis, cranial nerve problems and even death.

Benefit- A biopsy would lead to a tissue diagnosis. There have been a variety of small studies which has shown that stereotactic biopsy of intrinsic pontine lesions is possible. The issue is that the vast majority of pediatric tumors are high grade gliomas and would be treated as such the same without the pathology. However, for those very few children with pathology other than high grade glioma the prognosis and treatment could be significantly different. (see first reference)

Note-The pathology of diffuse intrinsic pontine lesions in adults is more varied than with children. (For further information look at the abstract reference- Stereotactic biopsy of brainstem mass lesions.)

3) Other neurosurgical issues can arise. One of the most common potential problems is hydrocephalus because the mass blocks the outflow of cerebral spinal fluid at the 4th ventricle. This can be treated neurosurgically by a shunt procedure.

Finding Pediatric Neurosurgeons

There are times that parents wish to seek out the opinions of pediatric neurosurgeons but are unsure how to locate them. One option is to seek out members of the American Society of Pediatric Neurosurgeons.

Another option is to contact institutions associated with the Pediatric Brain Tumor Consortium.

Parents may also ask their medical team for recommendations.