Whitney, 9 years old Arnold Chiari Malformation & Syringomyelia

Whitney has a condition know as Arnold Chiari (kee-ar’-ee) Malformation.  She has an unusually small posterior fossa, so her brain is slipping down through the foramen magnum(where the spinal cord comes up).  This restricts the flow of her cerebral fluid, and has caused a cyst of fluid to form inside her spinal cord.  This is called Syringomyelia. We first started to notice something might be wrong when Whitney was 4.  She would be playing and suddenly be crying and screaming that her head hurt.  Then she would be nauseas and start to vomit.  Sometimes she would be vomit for up to 4 hours.  She would sleep, vomit, sleep, vomit etc.

It seemed like it always happened when she was playing hard and it was hot.  We thought she was getting overheated.  So, we tried to limit her activity on hot days and give her plenty of water.  Then when she was 6 she got terribly sick on a cold and rainy day.  We finally had enough and scheduled an appointment with her pediatrician.  He said he thought it was just childhood migraines, but if it would ease our minds we could do an MRI to rule everything else out.  We definitly wanted the MRI.  We got the call on Friday August 29, 2002 from the doctor.  He told us it was Arnold Chiari Malformation and he would be sending us to see a neurosurgeon.  Arnold who???  Neuro what???  We were in shock.  I guess not total shock, because our guts told us something was not right.  Our appointment with the neurosurgeon was scheduled for Tuesday.  We researched and researched on the internet over the weekend.  We took a journal of every time she had a headache, how long they lasted, and what happened.  The neurosurgeon thought Whitney was having migraines too.  He didn’t even look at the journal.  We told him that we would like a second opinion from a pediatric neurosurgeon, so he referred us to one that was 1 ½ hours away.  We saw her and she also thought that the Chiari was an accidental finding.  We were so thrilled!  YEA!  Nothing was wrong!  Or so we would have liked to believe. Whitney was struggling in school, still having debilitating headaches, neck pain, difficulty swallowing, overheating, dehydration, ear aches with no sign of infection, fatigue, fits of anger, memory loss, tingling in arms and legs, intolerance to loud noises, difficulty reading, profuse sweating, low body temperature, back pain, stomach aches, overactive gag reflex, and chest pain.  Just to name a fewJ  Her teachers wanted to know what was going on that she was in the nurse’s office every other day with a headache.  I didn’t know.  I guess it’s just migraines…give her Tylenol and call me.  As all of this was happening I was fortunate enough to find the WACMA Parents web site.  I posted to the group.  I figured "what do I have to lose"; at this point everyone thinks we're crazy anyway.  This stuff happening to Whitney was so weird.  I was so grateful to get e-mails back from parents describing their children as I had described Whitney.  I noticed that a Doctor's name kept coming up in the posts as a good neurosurgeon who knew Chiari.  His office was only 3 hours away; how could we be so lucky? Whitney, the night before surgery I got Whitney’s pediatrician to refer us to the neurosurgeon.  So, more MRI films  (her favoriteL).  We went up to Chicago, not knowing what to expect, and what we found was a great sense of relief.  The previous neurosurgeon said her herniation of the brain was 1.8mm.  It turned out to be 18mm.  She also had a syrinx in her cervical spine.  Her symptoms were not uncommon for a child with Chiari Malformation.  Her surgery was scheduled for July 30, 2004 at the University of Chicago Children’s Hospital.  After her surgery, Whitney told her Grandpa that she felt better than she had in her entire life!   Whitney, immediately after surgery Whitney, 2 weeks after surgery It’s only been 4 years since surgery, but for the most part, quite a few of her symptoms have gotten better.  (We’re still hoping for that neater handwritingJ)  We can now control her headaches with Motrin, and she rarely vomits as a result of them. After seeing Whitney suffer, and knowing there was a need for funds, we decided to purchase silicone bracelets and sell them as a fund raiser.   We got our family and friends to donate most of the purchase price of the bracelets, so all the proceeds will go to The University of Chicago Pediatric Neurosurgical Research and Educational Fund.  Our hope is that with adequate funds, great strides can be made in research to help those who suffer from Chiari Malformation.