Neurologic Needs and Care

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Parents

  • Monitoring signs and symptoms is very important. It is critical that you contact your neurosurgeon if you notice any changes in your child. Early detection of problems can help prevent serious complications. Tests may be done to monitor hydrocephalus.
  • Know where the end of your child’s shunt is located.
  • The most common presentation of the Chiari malformation is stridor. It occurs most often in infancy up through the first decade of life.
  • A shunt revision or shunting may be required. The neurosurgeon who follows your child will determine treatment. Other surgery may be needed. Your neurosurgeon will discuss risks and complications in great detail.
  • Know where your child’s shunt is placed. Journal or write down any changes in your child’s eating habits, sleeping patterns etc.
  • Check with your neurosurgeon about considering antibiotics before any surgical or dental procedure.

Teens

  • It is very important to know the signs and symptoms of shunt malfunction. The signs are:
    • Increasing head size.
    • Change in the functioning of upper extremities.
    • Regression in milestones or school performance.
    • Neck pain.
    • Headache.
    • Loss of balance.
    Treatment may include a shunt revision.
  • Headaches are common in adolescents and do not always indicate shunt malfunction, but the shunt should always be checked.
  • Tethered cord is another issue that may come up since it noticeable during stages of growth, like the ones that any teen has. To monitor for signs of Tethered Cord Syndrome, it is important to see a neurosurgeon on a regular basis. The decision to release the tethered cord is complex and needs to be discussed with a neurosurgeon. Every teen who has Spina Bifida is different.
  • You should not be losing function. Contact your health care provider immediately if you begin to have problems in new areas or show any loss or decline in functioning.

Adults

  • Most people with Spina Bifida have hydrocephalus. Hydrocephalus means extra fluid in the brain. People with hydrocephalus need surgery to place a shunt inside the brain to drain this fluid.Most people with Spina Bifida and hydrocephalus will need the shunt for life. Some people who have Spina Bifida will require multiple revisions in their lifetimes.
  • If you respond quickly to these warning signs, the shunt can be repaired or replaced.
    • Vomiting.
    • Headaches.
    • Vision problems (cross-eyed, double vision).
    • More tired than usual.
    • Easily upset.
    • “Just don't feel right.”
  • Occasionally when a shunt stops working, especially in adults, the symptoms may be different and include:
    • Memory problems.
    • Vision problems.
    • More difficulty learning.
    • Changes in mood.
    • Changes in balance.
    • Head and neck pain.
    • Numbness in the upper extremities.
    • Difficulty with gagging or swallowing.
  • Keeping regular visits with a health care provider who understands your shunt, like a neurologist or neurosurgeon, to monitor your situation is important.
  • Many people with Spina Bifida also have a Chiari malformation. Some individuals can have additional or different symptoms. These symptoms need to be reported to a neurosurgeon for further evaluation.
  • Tethered cord is another common issue and it means that a spinal cord is bound down or restricted. It is important to monitor any changes and see a health care provider for a referral to a neurosurgeon.

Resources

Recommended Reading

FAQs on Spina Bifida

Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board

Hydrocephalus and Shunts

Symptomatic Chiari Malformation

Tethering Spinal Cord


Organizations that Can Help

Spina Bifida Association Chapters

Spina Bifida Clinics

Please Note: These resources and information are reviewed periodically. They do not represent all of the resources currently available on a topic. If any updates are needed or if you would like to recommend a resource, please email the Resource Center at sbaa@sbaa.org.