Dr. Neil Feldstein

The annual Pool Symposium was held once again here at Columbia and the theme this year was pediatric neurosurgery.

Dr. Neil A. Feldstein, Dr. Richard Anderson, and Dr. Saadi Ghatan from the Pediatric Neurosurgery Center were all there and each presented in their areas of expertise.

Dr. Feldstein spoke about chiari malformations* and craniosynostosis** surgery. He can be seen in the top left photo discussing normal skull anatomy.

Dr. Richard Anderson

Dr Anderson presented Spinal Dysraphism and Neurosurgical Management of Childhood Spasticity. He can be seen at right elucidating spasticity treatment options.

Dr. Ghatan discussed hydrocephalus*** and epilepsy**** management. He can be seen in the bottom left photo relaying the history of epilepsy surgery.

Dr. Saadi Ghatan

Dr. Feldstein tells us, “We also had guest speakers who discussed pain management and Emergency Room management of our patients.”

Once again, the event was a great success!

*Read more stories about Chiari Malformation:
More Evidence That Riskiest Part Of Chiari Surgery May Not Be Necessary
Should We Let Our Chiari Kids Play?
Last Year…Brain Surgery, This Year…Freethrow Championship
Medical First: Boy’s Brainstem Saved By A Nose    

**You can learn more about craniosynostosis from our blog, The Importance Of Baby’s ‘Soft Spot’. 

***Read the story about Sherman Alexie: Born With Hydrocephalus, Now A Well Known Author. 

****Read this story, All He Wanted Was To Drive: An Epilepsy Success Story

“I had headaches since I was in 7th grade—small ones at the back of my head,” says Brittany, “But I thought that was normal.” She occasionally would lose her balance and sometimes her arms and legs would tingle a little, “nothing really bad, though,” she says.

That was until her junior year of cheerleading at North Andover High School when she got hit in the head–four times.

“In cheerleading, I am a base,” says Brittany. “So, two times in that season I got kicked in the head and twice I got hit.” Three of those injuries were diagnosed as concussions.

Brittany says, “The second one was right before we competed in States and I don’t even remember competing.” The last one kept her out for the rest of the season.

Her headaches got worse too. “I was still having headaches three months after the last hit,” says Brittany. “the [cheerleading] trainer wouldn’t let me come back until a neurologist cleared me.”

Living just outside of Boston, she had her choice of specialists. A neurosurgeon at one of Boston’s large metropolitan hospitals had an MRI done and examined Brittany in May. He told her the concussions were healed but he had discovered a bigger problem.

Brittany had a Chiari malformation. Present since birth, the back of her skull and spinal column were not fully developed, causing part of her brain to push down into her spinal canal.

This had gone unnoticed until Brittany’s body had grown enough to put pressure on her brain and spinal cord. That was why she had been having the tingling and loss of balance, and why her headaches were getting worse.

The treatment for Chiari malformation is surgical. Surgeons can go into the base of the skull and remove bone and tissue to take pressure off the brain and spinal cord. While this procedure will stop the problem from getting worse, damage to the brain or chord that has already occurred cannot always be reversed.

Brittany’s symptoms at this point were mild. The doctor told her that her malformation was relatively minor and that she wasn’t a candidate for this surgery. He said to come back if the headaches got worse.

They did get worse; by the end of the summer she had to stop cheerleading. “I felt pressure in my head all the time. Any kind of exertion made it worse,” Brittany says. “It was devastating to quit.”

In the Fall of her senior year, her school work began to suffer too. “Making it through a whole day of school was really hard,” Brittany says. She was put on a reduced schedule but still missed a lot of days. ”The only thing that really helped was sleep. I was exhausted all the time.”

Still, the neurosurgeon insisted she wasn’t a surgical candidate so Brittany and her mom sought another opinion. The results were the same; based on her images, she was not a candidate for surgery.

Brittany began a four month trial of pain management. She says, “I saw a lot of different doctors. I tried three different medications and none of them worked. I did physical therapy for a little bit and it didn’t work. I got nerve blocks and it didn’t work at all. We tried everything.”

She returned to the second surgeon and the answer was still no. Then, through a neighbor, Brittany and her family heard about Dr. Richard Anderson from the Pediatric Neurosurgery Center here at Columbia.

He had been treating a relative of theirs who happened to be visiting and gave him a call. “Dr. Anderson called us right away,” says Brittany, ” and he asked my mom to send him all of the films [X-rays and MRI scans]. He called back less than 24 hours later and said, ‘I think I might be able to help you.’”

On December 23rd, Brittany and her Mom drove down from Boston to New York to see Dr. Anderson. “We met with him for about an hour and it was great,” says Brittany. “One of the things he said to me was, ‘I treat the patient, not the picture.’ It made me feel so at ease. He was so kind mannered.” They scheduled Brittany’s surgery before they left his office.

Dr. Anderson performed Brittany’s surgery a month later at Valley Hospital in New Jersey. Brittany says, “All of the nurses who were there said that all of Dr. Anderson’s patients do amazingly well. It made me really happy knowing that I had such a great surgeon.”

Brittany’s surgery lasted just under five hours. When she woke up she said her symptoms were gone. “I am not going to sugar coat it,” she says. “The back of my head was really sore, but I didn’t feel any head pain or head pressure like before. That was immediately gone.”

The next morning Brittany was up walking in the hallway with her mom and two days later she went home.

Brittany with her Mom Chris

It has been four months since her surgery and Brittany is still completely symptom free; no more headaches, no tingling, and her balance is perfect. She has even started to practice tumbling again without any problem.

“I am back to the person I was before. Even better than when I was in middle school. It’s been amazing.”

Brittany is busy getting ready to go off to college in September and is looking forward to cheering at her new school.

Before her surgery, Brittany did a lot of research on-line and says, ”I did not read one good story. I want someone to read my story and say, ‘this could happen to me—I could be better after this.’”

As a result, many children lost a great part of their childhood. The tide may be turning on this view, however. According to Dr. Richard Anderson from the Pediatric Neurosurgery Center, “current research does not fully support this ban on play and the benefits of play may warrant loosening of current guidelines.”

Play is an integral part of being a child. “It is important, not only to their physical health, but also to their social and emotional development,” says Dr. Anderson.

“The concern,” says Anderson, “is that when a child has CMI, there may be a change in the location of cerebral spinal fluid and its ability to buffer the brain and spine in high-velocity impact.” With CMI, the cerebellar tonsils (part of the brain) extend at least five millimeters below the base of the skull into the spinal canal. What this means is that there may be less room in the spinal canal and Dr. Anderson says, “The hypothesis is that this may increase the risk of brain and spinal cord injury.”

A handful of case studies in the 1980′s and 1990’s supported this concern and by-and-large pediatric neurosurgeons took the, ‘better to be safe than sorry’ approach. In particular, when the child was symptomatic they highly recommended avoidance of sports and rough play.

In 2000, however, a survey of members of the joint Pediatric Section of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons showed that pediatric neurosurgeons recommended no activity restrictions for asymptomatic children with Chiari I 64% of the time. When images of the spinal cord showed pockets of fluid build-up, called syringomyelia (“syrinx”) in addition to the Chiari I, that figure dropped down to 58%. In other words, despite the presence of Chiari I malformation and a syrinx, if the child was asymptomatic, more than half of pediatric neurosurgeons did not recommend activity restrictions.

Dr. Richard Anderson says that in asymptomatic children, activity restriction may not be warranted, “The research is sporadic and often based on anecdotal reports. The quality of the evidence is not good enough to make official recommendations.” In particular he says, “ to date, the research has yet to show that CMI definitively increases the risk of spinal cord injury. It is difficult to deny a child the opportunity to play sports their entire life by arguing an increased risk when little to no data exist.”

Although definitive studies are lacking, the more recent feeling among many researchers is that there is simply not enough evidence to definitively suggest prophylactic surgery or avoidance of contact sports in patients with asymptomatic CMI.

What the researchers and Dr. Anderson seem to agree on is that when CMI has advanced to the point of being symptomatic, children should not be allowed to engage in rough play or contact/collision sports. The risk is too great. The question still remains however, whether asymptomatic children with or without a syrinx are more at risk for spinal cord or brain injury. Until that has been proven one way or another, restrictions should be implemented with an eye towards safety but without ignoring the importance of play.

Based on the evidence, Dr. Feldstein recommended nondural opening for all patients except those with: Rapid progression of scoliosis with underlying syrinx; Rapid progression of neurologic dysfunction; Recurrence after nondural decompression WITHOUT bone regrowth; or for those likely to require posterior occipital-cervical fusion.

Related Topics:

Docs Present at 2010 Congress of Neurological Surgeons Meeting

More Evidence That Riskiest Part Of Chiari Surgery May Not Be Necessary

Front of Rosanne Cash's new book "Composed"

In her new memoir “Composed,” singer Rosanne Cash tells how she survived brain surgery for a Chiari Malformation.

“I am glad I had brain surgery. My cerebellum was in a rogue location: It had done the geographical equivalent of starting in Vancouver and wandering down to Houston. The map had to be rearranged,” says Rosanne Cash in “Composed.”

In her book she warmly talks about her surgeon Dr. Guy McKhann from the Brain Tumor Center and her physical therapist Dr. Evan Johnson from the Spine Center.

Last year Tom and Terri Hughes sat in a tidy hospital waiting room while their 13 year old son Troy underwent brain surgery.  Hours later, when Troy’s surgeon, Dr. Neil A. Feldstein from the Pediatric Neurosurgery Center emerged from the operating room and asked Tom and Terri into a small side room, Tom remembers, ”that was the longest ten feet I ever walked.”

Troy’s parents were still reeling from the sudden diagnosis of Hydrocephalus and Chiari Malformation given to their son just a few weeks earlier. Conditions that were only discovered after he and another kid butted heads in a football game, he got a headache that would not go away, and he finally had an MRI.

With a Chiari Malformation, part of the brain, the cerebellum, actually protrudes down into the spinal canal.   Hydrocephalus, also called water on the brain, is a condition where there is a buildup of cerebrospinal fluid and pressure in the brain, one sign of which may be a larger than average-sized head.

Tom says, “Before surgery we didn’t know anything was wrong with Troy.  He always had a kind of big head.  We had a hard time finding hats and helmets that fit him, but I have a big head too and so does my dad, so we didn’t worry about it.  He did occasionally get headaches, but lots of people do.   His grades were dipping lately, also, but we thought it was because he was getting more interested in sports.”

Dr. Feldstein said that the Chiari Troy was diagnosed with was mild enough that surgery wasn’t necessary.  He said, though, that he did need to surgically address the hydrocephalus because of the pressure it put on Troy’s brain.  He also wanted to make sure that his football injury hadn’t caused any bleeding.

Dr. Feldstein was able to perform a newer procedure called an endoscopic third ventriculostomy for Troy.  In this minimally invasive surgery, surgeons work with tiny instruments, endoscopes, and a sophisticated computer and CT scanner to precisely map the patient’s brain.  They are able to locate the third ventricle and insert a small narrow scope directly there with minimal disruption to surrounding brain tissue.

The ventricles (there are four of them) are cavities deep in the brain where the cerebrospinal fluid is produced.  Once Dr. Feldstein reached the third ventricle, he made a small hole in its floor, essentially creating a drain for the cerebrospinal fluid to keep it from building up in his head.

After surgery, in that small side room at Columbia Presbyterian Hospital, Dr. Feldstein told Tom and Terri, “Troy did great. He’s a strong boy.  Just remember, no more contact sports.”

Fortunately, Troy loves all sports, not just football.  He was, in fact, a pretty good basketball player and just one week after his surgery, with a still-bald head and stitches, Troy entered a local free-throw contest.

“It was amazing.  There he was at the free throw line,” his dad said, “showing incredible focus and agility when a week before he was having brain surgery.”   Troy went all the way to the New Jersey State Free Throw Championships and took second place.

That wasn’t good enough for Troy, though, so he kept practicing.  Over the next year, not only did his free-throw get better, his headaches went away, and his grades started to come up.   His dad said, “Where he was getting C’s and D’s before surgery, he started getting A’s and B’s.”

Troy started high school in the fall of last year, with a renewed sense of purpose. He joined the cross country and basketball teams and according to his dad, he started doing something uncharacteristic of the average teenager, he started to give back.

A little background: Troy had a personal hero, a minor league baseball player named Joel Stevens. Joel had been a local high-school athlete like Troy who did so well that after high school he was recruited by the Baltimore Orioles. His career was cut short though, when, at the age of 22, Joel died of colon cancer.   After he died, his teammates set up a charity for sick kids called Joel’s Kids.

When Troy’s illness was discovered, his dad called Joel Stevens’ old high-school coach who was also a personal friend of the family.   Coach Mike sent Troy a commemorative wrist band with Joel’s old number 24 on it and said the whole school was rooting for him.

Troy continues to wear that wristband and this year he decided that for every point he scored in basketball, he’d give one dollar of his own chore money to Joel’s Kids.

By mid March, Troy had earned a ton of points, his parents matched the money, and at the end-of-season banquet, the basketball booster club presented Troy with a check that matched the money once more.

That banquet, coincidentally, was held the night before this year’s New Jersey State Free Throw Championships.  Once again, Troy had won his way to a place at States and this time he was determined to come in first.

In the end, Troy and another kid were tied, both with 23 out of 25 shots. They called a “shoot out” and Troy won it (3/5 to his opponent’s 1/5).  Keep up the great shots, Troy!  We’re rooting for you!

Troy Hughes wins NJ State Free Throw Championship

Learn more about Pediatric Hydrocephalus and Chiari Malformation.

CM is a boney malformation at the opening of skull that can cause increased pressure on the lower part of the brain and the spine.  In some cases, this causes the spinal column to curve and create a Scoliosis.

The surgical treatment for this problem aims to remove this pressure.  Bone is taken from the back of the skull and neck.  It is also standard for surgeons to open up the dura to relieve pressure.  Dura, short for dura mater, is a thick lining that surrounds the brain and spinal cord creating a closed system.  Coursing through this system is spinal fluid that regulates pressure and cushions these vital structures.

Though it is patched afterward, opening the dura is risky because it makes this protected system vulnerable to contamination such as meningitis or leaks that can create a dangerous disruption of the pressure system.  Their research indicates that this part of the procedure may not always be worth the risk.

They looked at patients with Scoliosis and CM who had surgery at this institution since 1995.  The patients treated until 2003 had their dura opened and after that year the dura was not opened unless the scoliosis progression was unusually rapid.

The degree of scoliosis and neurological symptoms like limb weakness, hyperactive reflexes, and difficulty swallowing were assessed before and after surgery and compared between these two groups.  Their results showed that improvements following surgery were more or less the same with or without dural opening.

There was a slightly higher chance that a second surgery would be needed in the non-dural-opening group but this group also had significantly fewer complications.

This was the first study of it’s kind and the authors encourage other neurosurgeons to compare their results with and without dural opening.  It may be that this part of the surgery isn’t always necessary and they can expose fewer children to these risks.

*Doctors from the Pediatric Neurosurgery Center involved in this study were: TC Hankinson, J Wade, C Shannon, S Ghatan, RCE Anderson, and NA Feldstein

The Annual Pediatric Neurosurgery Section Meeting is a joint venture of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons. (See the full agenda from the December 2009 meeting).

See a related blog about Chiari 1 Malformations: Pediatrics Added to this Year’s IML at the Congress of Neurosurgery Meeting

A young boy with a rare case of  Type One Chiari Malformation (CMI) was the first to undergo a new minimally invasive spine surgery through his nose.  Dr. Richard Anderson from the Pediatric Center and his colleagues presented this case at the annual Pediatric Neurosurgery Section meeting in December.

CMI is a birth defect where the bony opening at the base of the skull is malformed and, as the patient grows, can cause a dangerous build-up of pressure on the brain and spinal cord.

Surgeons usually uncrowd the area by removing bone from the back of the skull and neck. In some rare cases however, surgery has to be done on the front of the spine too because of pressure on the brainstem.  This was the case with this boy.

Typically, the front of the spine is accessed through the mouth.  This can be a problem when working with children because their mouths are so much smaller. Furthermore, when the surgical site is as high up on the spine as the brainstem is, surgeons sometimes have to split the palate to get there.  Even when they don’t, working through the mouth can cause considerable swelling that sometimes requires prolonged use of a breathing tube.  Additionally, if there is a deformity or some other problem, the mouth as a surgical entryway may not even be an option.

Surgeons have developed a much less invasive procedure using an endoscope through the patient’s nose.  An endoscope is a tube through which tiny cameras, lights, and surgical tools can be passed to perform a much less traumatic version of the same surgery.  The procedure has been used on adults and now for the first time, it has successfully been performed on a child.

The patient was a 15 year old boy, who complained of headaches, had difficulty swallowing and experienced weakness in his arms.  His speech was altered and he had lost his “gag “ reflex (an important reflex that keeps us from choking.)

Dr. Anderson and his team were able to use the endoscope through the boy’s nose to get to the front of his spinal column.  There they removed a piece of bone that took pressure off of his brainstem. He recovered well and by his one month checkup, his headaches were gone, he could swallow and speak normally, and his “gag” reflex had returned.

With the success of this procedure,  his surgeons encouraged fellow pediatric neurosurgeons at their recent meeting to consider this as a viable alternative for children with this kind of problem.

The Annual Pediatric Neurosurgery Section Meeting is a joint venture of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons. (See the full agenda from the December 2009 meeting).

See another one of our blogs about Chiari 1 Malformations: Pediatrics Added to this Year’s IML at the Congress of Neurosurgery Meeting

This year at the annual meeting of the Congress of Neurological Surgeons (CNS) they added pediatrics to their Integrated Medical Learning (IML) program.  Dr. Neil Feldstein from the Pediatric Neurosurgery Center was one of the presenters during a session on the surgical management of Chiari Malformation Type 1 (CM-1).

“Integrated Medical Learning® allows participants to define the content and direction of sessions targeted at the most practical and important clinical and scientific questions of the day. Learners evaluate key evidence, interact with faculty, and define current and future practice.” CNS Website (To learn more about the IML program see previous Department of Neurological Surgery blog: Results from first IML: Aneurysm Coiling v. Clipping Still a Toss up)

Before the meeting, review articles on the latest developments in the surgical treatment of CM-1 were made accessible (pediatric review articles) to attendees. Surveys were also sent out to poll them in an effort to guide the presentations. The question they determined to address was “What extent of decompression is necessary in the surgical management of Chiari 1 Malformations (CM-1)?”

CM-1 is a congenital (present at birth) condition where bony malformation causes part of the brain to push down into the spinal canal. Sometimes this problem exists without any symptoms, in which case, most surgeons just leave it alone. Sometimes symptoms manifest when the person is well into adulthood. Symptoms can include headaches, stiffness or pain in the back of the neck, difficulty swallowing, and decreased strength or feeling in the arms and legs. Children with this problem may exhibit developmental delays. The treatment of CM-1 is surgical. The goal of which is to take pressure off of the spinal cord and brain by performing a decompression.

The area under pressure is decompressed by removing bone, often from the top of the spine and sometimes from the skull. Traditionally the membrane surrounding the spinal cord, the dura, is also opened up and a graft inserted to make more room for the spinal cord. There is debate among pediatric neurosurgeons as to whether the dura absolutely has to be opened, however.

The dura protects the brain and spinal cord and holds in its surrounding fluid. Deep within the brain a fluid is produced (cerebrospinal fluid) that circulates throughout the brain and spinal cord in a closed system. Pressure within this system is self regulating and because it is closed, the brain and spinal cord are protected from infection. Opening the dura is risky because it can offset the pressure system, let in germs, or introduce a leak. All of which can have serious consequences.

At this years CNS meeting, Dr. Feldstein presented an argument for decompression without dural opening. He presented a number of cases and research studies that support his stance. He conceded that in some rare cases it is absolutely necessary to do, however, for the most part, he and his fellow surgeons at the Pediatric Neurosurgery Center have found that the benefits of adding this procedure don’t always outweigh the risks and therefore do not automatically perform this part of the procedure.

Learn more about Chiari Malformations.

A Chiari malformation is a congenital (present at birth) defect in the area of the back of the head where the brain and spinal cord connect. The condition is also called Arnold Chiari malformation. There are four types of Chiari malformations, including the following:

• Type I – this is the most common type of Chiari malformation. Commonly goes unnoticed until problems arise in the adolescent or adult years of life. In this condition, the base of the skull and the upper spinal area are not formed properly.
• Type II – In this condition, part of the back of the brain shifts downward through the bottom of the skull area.

Type II Chiari malformations are typically seen in infants who are born with spina bifida, a neurological condition that causes a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body.

Type II Chiari malformations can also be associated with a condition known as hydrocephalus. Hydrocephalus is a condition in which there is an overproduction or lack of absorption of the cerebral spinal fluid (CSF) that is found inside of the ventricles (fluid-filled areas) inside of the brain. The increased fluid causes the pressure inside of the head to increase and the skull bones to expand to a larger-than-normal appearance.

• Type III - the back of the brain protrudes out of an opening in the back of the skull area.
• Type IV – the back of the brain fails to develop normally.

What causes Chiari malformation?

Although the exact cause of Chiari malformation is unknown, it is thought that a problem during fetal development may cause the abnormal brain formation. Chiari malformation may be caused by exposure to harmful substances during fetal development or associated with genetic problems or syndromes that may have a tendency to run in families.

Theories suggest that the following may predispose the fetus to problems that affect the normal development of the head during pregnancy:

• exposure to hazardous chemicals/substances
• lack of proper vitamins and nutrients in the diet
• infection
• prescription or illegal drug and alcohol consumption

What are the symptoms of a Chiari malformation?

The following are the most common symptoms of a Chiari malformation. However, each child may experience symptoms differently. In infants and older children born with this condition, symptoms may include:

• headaches
• stiffness or pain in the neck or back of the head area
• poor feeding and swallowing
• decreased strength in the arms
• decreased sensation in the arms and legs
• rapid, back and forth, eye movement
• developmental delays
• weak cry
• breathing problems

The symptoms of Chiari malformation may resemble other conditions or medical problems. Always consult your child’s physician for a diagnosis.

How is a Chiari malformation diagnosed?

If a Chiari malformation occurs with other congenital (present at birth) defects, the diagnosis may be made at birth. Other times, the diagnosis is made after the onset of specific signs and symptoms, and after diagnostic testing. The physician obtains a complete prenatal and birth history of the child and may also ask if there is a family history of any medical problems. The physician will also ask about developmental milestones, such as the age the child sat up, crawled, or walked since a Chiari malformation can be associated with other neuromuscular disorders. Developmental delays may require further medical follow up for underlying problems.

During the examination, a measurement of the circumference of the child’s head is taken and compared to a scale that can identify normal and abnormal ranges.

Diagnostic tests that may be performed to confirm the diagnosis of a Chiari malformation include:

• magnetic resonance imaging (MRI) – a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body.

Treatment for a Chiari malformation:

There are many ways to treat Chiari malformations, but all require surgery. The basic operation is one of uncrowding the area at the base of the cerebellum where it is pushing against the brainstem and spinal cord. This is done by removing a small portion of bone at the base of the skull deep to the neck muscles as well as often removing a part of the back of the first and occasionally additional spinal column segments. The operation is often modified if there is a syrinx present or if the child has hydrocephalus. Most children who have the surgery do quite well and have  improvement of their symptoms.

At the Children’s Hospital of New York, we have been collecting information since 1998 using intraoperative electrophysiological monitoring to help determine whether opening of the dura (a thick membrane that surrounds the brain and spinal cord) is a necessary component of surgery for children with Chiari I malformation. We discovered that most of the improvement in nerve impulses through the brain and spinal cord occurs after removal of the bone. However, we did not see any further improvement after opening the dura, suggesting that children may not require this additional step of surgery. Accordingly, for the past four years we have performed a less invasive operation where the dura is not opened during surgery. At this time, we have seen excellent clinical and radiographic results without any significant operative complications after bony decompression without dural opening. This is important because the complication rate after surgery has been reported to be nearly 4 times higher if the dura is opened during surgery.

In addition, the use of endoscopes has allowed for this procedure to be performed through smaller incisions, which helps in the reduction of post operative pain and speech recovery.

Specific treatment for a Chiari malformation will be determined by your child’s physician based on:

• your child’s age, overall health, and medical history
• the extent of the condition
• the type of condition
• your child’s tolerance for specific medications, procedures, or therapies
• expectations for the course of the condition
• your opinion or preference

Medical management consists of frequent physical examinations and diagnostic testing to monitor the growth and development of the brain, spinal cord, skull, and backbones.

Some types of Chiari malformations may require surgery to relieve increased pressure inside the head or neck area, or to help drain excess cerebral spinal fluid from the brain. Very severe Chiari malformations may be life threatening.

Parents are instructed to watch for any changes that may affect the child’s neurological status, including the following:

• breathing problems
• degree of alertness
• speech or feeding problems
• problems walking
• uncoordinated movement

Life-long considerations for a child with a Chiari malformation:

The full extent of the problems associated with a Chiari malformation are usually not completely understood immediately at birth, but may be revealed as the child grows and develops. Children born with a Chiari malformation require frequent examinations and diagnostic testing by his/her physician to monitor the development of the head as the child grows. The medical team works hard with the child’s family to provide education and guidance to improve the health and well-being of the child.

Genetic counseling may be recommended by the physician to provide information on the recurrences for Chiari malformation and any available testing.