Chiari Malformation in Children: Questions to Ask Your Doctor

Finding out that your child has a Chiari malformation can be overwhelming. Parents often have many questions like: What does this mean for my child? Will they need surgery? What will life be like afterward?

Before your appointment with a pediatric neurosurgeon, it helps to have a list of questions ready. This will help you feel confident and informed, so you can better support your child. Here are the most important questions to ask:

1. Why does my child have Chiari malformation?

A Chiari malformation happens when part of the brain (called the cerebellar tonsils) moves down into the spinal canal.

Most of the time, it doesn't cause problems. But in some cases, it can put pressure on the brainstem and spinal cord. It can also cause other issues like fluid buildup in the spinal cord or a curved spine (scoliosis). Ask your doctor to explain your child’s MRI results and whether the condition is mild or severe and if there are any related findings.

2. What symptoms of a Chiari malformation should I watch for?

Some children with Chiari malformation feel fine, while others may have symptoms:

Headaches (usually at the back of the head, worse with coughing or straining)
Neck pain or stiffness
Trouble swallowing
Dizziness or balance problems
Tingling in the hands or feet

Ask your doctor which symptoms you should track and when to get help.

3. How are Chiari-related headaches treated?

Some kids find relief with medication, physical therapy, or changes in lifestyle. If headaches don’t get better, then it might be time for surgery.

Headaches can happen for many reasons and might not always be linked to the Chiari malformation. But Chiari headaches are often located at the back of the head and can get worse with coughing or sneezing.

4. Does my child need Chiari surgery?

Most children with Chiari do not need surgery. Many children don’t need any treatment at all if diagnosed with a Chiari Malformation.

If surgery is recommended, ask why it’s necessary and what the benefits and risks are.

5. Why should I choose Connecticut Children's for Chiari malformation surgery?

Connecticut Children’s is dedicated exclusively to caring for kids, which means every aspect of your child’s surgical journey is designed with their safety, comfort, and long-term outcomes in mind.

Our pediatric neurosurgeons:

Are highly experienced in treating Chiari malformations
Use the most advanced techniques tailored to children.
Have a pediatric neurosurgeon on call 24/7, so your child has immediate access to expert care at any time after surgery.

This round-the-clock, comprehensive coverage ensures your child receives the highest level of specialized support during recovery and beyond.

6. What happens during Chiari decompression surgery?

If your child needs surgery, your doctor will explain how it helps relieve pressure on the brain and spinal cord.

Ask how long the surgery takes, what to expect in the hospital, and how soon your child can go back to school or activities.

7. What is recovery like after Chiari surgery?

Ask about pain management, how long your child may need to limit physical activity, and what to watch for during recovery.

Knowing what to expect will help you prepare at home and at school.

8. Can my child play sports and be a typical kid with Chiari malformation?

Many kids with Chiari malformation can still live full, active lives and even play sports. It depends on whether they have symptoms like headaches, balance problems, or weakness.

If their condition is stable and they’re doing well, they can usually participate in most activities with some caution around contact sports. Your doctor will monitor their progress and adjust recommendations as needed to keep them safe.

9. What other specialists does my child need to see for Chiari malformation?

Your care team may involve a headache specialist, pulmonologist, ear nose and throat doctor, audiologist, physical therapist or orthopedist to name a few.

Because we’re 100% dedicated to kids at Connecticut Children’s, we believe in a full team approach to treating the whole child. Our skilled, renowned pediatric neurosurgery team will connect you with the right specialists—at the right times.

10. What support services are available for Chiari malformation?

Taking care of a child with Chiari malformation can be tough. Ask about physical therapy, headache clinics, or support groups for families.

Final thoughts for parents about Chiari malformation

Every child’s experience with Chiari malformation is different. By asking these questions about symptoms, treatment, surgery, and life after diagnosis, you can make the best decisions for your child’s health.

Your neurosurgery team is there to answer your questions and support you through every step of the way.