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Chiari Malformation FAQ

By AGE2B team
January 31, 2022

1. Can Chiari Malformation occur in those not born with the deformity?

Yes. The name for this is secondary Chiari Malformation. This can be due to hydrocephalus, a condition in which tumors cause swelling of the brain and displacement of the structures. In some people, secondary Chiari Malformation develops after a shunt is placed in the lower part of the spinal canal. It has not been fully determined whether a tethered spinal cord can be the reason behind Chiari Malformation.

2. Can CM-I reoccur?

Some individuals who have experienced a period of relief from their symptoms following surgery for Chiari Malformation have recurrent symptoms. This can occur for various reasons and these people need to be carefully evaluated. In some cases, the reason is not the Chiari Malformation but is found to be other problems like pain from the nerves in the back of the head or problems with the discs in the cervical spine.

3. Does CM-I cause disability?

Depending on the person with Chiari Malformation, it can cause permanent or temporary disability. Many times, the symptoms that were the most bothersome were relieved by surgery, but the remaining symptoms can be harder to resolve. It can take much patient motivation, as well as effort and time, and the assistance offered by a team of healthcare providers to get the person with Chiari Malformation back to his or her usual lifestyle.

4. I have CM-I. Are there any activities I should avoid?

Every person is different and needs to be aware of how their own body responds to activities, so avoid what bothers you. Many people with Chiari Malformation find their symptoms are worse when they do things like look up, bend forward, strain or lift heavy objects. Before treatment, activities such as jumping (trampolines), roller coaster rides and contact sports are often restricted.

5. If CM-I is present at birth, why do the symptoms show up later?

The reason that the symptoms of Chiari Malformation do not appear in many individuals until they are older is not known. It’s possible that the flow of spinal fluid becomes restricted as we age, and also because of the repeated pulsing through the area. Sometimes the symptoms of Chiari Malformations first appear following a fall or an accident with an injury such as a whiplash or a car accident that occurs later in life.

6. Why do poor Cerebrospinal Fluid (CSF) circulation and crowding cause symptoms?

The cerebral spinal fluid flows around the brain and spinal cord constantly. It circulates continually, providing protection for the nerves. Many of the symptoms of Chiari Malformation are due to the flow of the spinal fluid being obstructed, or the cranial nerves or lower brain stem being compressed.

7. How are children with CM-I diagnosed?

Chiari Malformation is most often diagnosed by physicians using an MRI scan. If your child has symptoms and you have Chiari Malformation, make an appointment with your pediatrician.

8. How can I help my family understand my condition?

The symptoms of Chiari Malformation are not usually visible to others, so it can be difficult for friends and family to understand the disease. Sometimes, the best way to help others understand is to take them with you to your doctor. Write down a few simple questions about Chiari Malformation and have your neurologist explain them to you and your family member or friend during your appointment.

9. How can I help protect my unborn child from Neural tube defects?

Ask your obstetrician about taking a folic acid supplement during pregnancy.

10. How does CM-I affect children?

Even though many of the same symptoms of Chiari Malformation that are present in adults with the disease are also present in children, children of a young age may not be able to verbalize how they are feeling. In rare cases, a child may have paroxysmal rage or cerebellar fits.

11. If I have CM-I will my children inherit it?

In some cases, Chiari Malformation can be passed from the father or mother to a child, but most of the time it doesn’t run in families.

12. Do CM-I patients who are pregnant have to have a Cesarean section?

This is a question that needs to be discussed with your obstetrician, but having Chiari Malformation does not mean a pregnant woman will require a C-section delivery. Many women with Chiari Malformation have vaginal deliveries.

13. Is pregnancy possible with CM-I?

Yes. Many women who have Chiari Malformation become pregnant.

14. Is it OK for my chiropractor to crack my neck?

Chiropractic is not recommended for people who have Chiari Malformation. High-velocity adjustments have resulted in injury.

15. Should I tell my boss that I have CM-I?

Many people who have Chiari Malformation work for many years following their diagnosis. Many federal and state laws address the issue of work-related disability and illness. You can check with your state agencies about workplace discrimination. The Americans with Disabilities Act may also be helpful, as well as The Family and Medical Leave Act.  Chiari Malformation does not give others the right to discriminate. Find out what your rights are and then make a decision about disclosing your condition to your boss.

16. How can I cope with headaches?

The headaches associated with Chiari Malformation are often triggered by lifting, bending, laughing, straining or coughing. Headaches can also be brought on by taking too much medication to treat them. Be sure to stay hydrated. Drink plenty of water because dehydration can also add to headaches caused by Chiari Malformation. When you have a headache, you may find it helps to lie down in a dark room and apply cold or heat to the painful area. Some physicians prescribe migraine medication for occasional use or specific anti-seizure drugs.

17. Is there anything I can do to ease dizziness?

Lying completely flat can make dizziness worse. Moving your head suddenly or changing positions quickly can also cause it. Chiari Malformation is not the only condition that can cause dizziness, so you might consider seeing an EENT (eyes, ears, nose, throat) specialist to see if there is another reason for your dizziness. Problems with the inner ear often can cause a person to become dizzy.

18. The constant burning pain in my arms is keeping me from sleeping. What can I take for this pain?

The neuropathic pain or nerve pain caused by Chiari Malformation is not usually relieved by narcotics. The usual medications used for this type of pain are certain prescription medications that are commonly used to treat seizures. Examples are pregabalin and gabapentin.

19. Why am I falling and having trouble walking?

Chiari Malformation causes a crowding in the part of the brain that controls coordination of voluntary muscles. It helps with different movements, including walking and maintaining balance.

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