How can we be sure it really is DIPG?
The diagnosis of DIPG is based on the patient’s symptoms and MRI images. If the symptoms and MRI studies are not typical, a stereotactic biopsy may be required to make a diagnosis. In this case, a small hole is drilled in the skull. A needle will then be inserted through this hole to take a small piece of tissue for testing. A pathologist will examine the sample and make a diagnosis.
Are there DIPG clinical trials we could be joining?
Maybe. Ask your medical team what clinical trials may be appropriate. You can also check the current list of clinical trials on clinicaltrials.gov.
Where should I take my child for treatment for DIPG?
DIPG is so rare that most doctors have never seen it – it’s important that you take your child to a major medical center where the neuroscience team has experience with rare brain tumors. (See Doctors Who Treat DIPG.)
What causes a pontine tumor (DIPG)?
Unfortunately, nobody knows. There are no known risk factors for DIPG, and no way to prevent it. Find out more about DIPG.
Should I get a second opinion for a diagnosis of DIPG?
Absolutely. The pediatric neurosurgery team at the Weill Cornell Pediatric Brain and Spine Center will work with you to find other major medical institutions that may have options for your child’s treatment. We are also happy to evaluate your child and offer a second opinion on a diagnosis you’ve received elsewhere. Contact Dr. Souweidane or Dr. Greenfield at 212-746-2363, or use our online form to request an appointment.