- Be iNFormed
- NF1 Tumors
Robert Listernick, MD
Learning that your child has a tumor can be overwhelming, but information and expert care can make all the difference. While many people are familiar with optic pathway tumors in children with Neurofibromatosis Type 1, brainstem tumors are the second most common type. The good news is that these tumors are rarely cancerous and many never require treatment.
What is a Brainstem Tumor?
The brainstem is the part of the brain that connects to the spinal cord. It controls essential functions like breathing, swallowing, heart rate, and blood pressure. Because this area is so critical, even small tumors can have significant effects.
Signs and Symptoms
Although brainstem tumors can develop at any age, they are most often seen in children around 7 years old. In some cases, a tumor can block the flow of cerebrospinal fluid, leading to a condition called hydrocephalus (a buildup of fluid in the brain).
Symptoms may include:
- Nausea, vomiting, and severe headaches, especially at night or in the morning.
- Difficulty swallowing.
- A new onset of nasal-sounding speech.
- Trouble with walking or maintaining balance.
Diagnosis and a Key Distinction
More than half of children with NF1 brainstem tumors show no symptoms when the tumor is found. They are often discovered by chance during MRI scans for other reasons, like monitoring an optic pathway tumor.
It’s also important to know that MRI scans in children with NF1 often show what are sometimes called “NF spots.” These are not tumors, do not cause problems, and usually disappear over time. An experienced NF clinician can tell the difference.
All children with NF1-associated brain tumors of any type need to be cared for by experts who have significant NF1 experience.
Robert Listernick, MD
Treatment Approaches
Many of these tumors will never grow or require any treatment. If a tumor causes hydrocephalus, a surgeon may place a shunt to drain the excess fluid, and this might be the only treatment needed. For tumors that do grow, effective therapies like chemotherapy are available.
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