Hunter Van Calster

First post: Jul 12, 2018 Latest post: Nov 12, 2022
Welcome to Hunter's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Those of you who do not know Hunter's health backstory, here is a quick synopsis.  In October of 2016, Hunter woke up with a terrible headache.  After trying all of the typical medications, she was seen and diagnosed with a Migraine.  Unfortunately none of the medications seemed to be helping her.  Many tests and procedures later, as well as a two week inpatient hospital stay, we realized this was not your ordinary migraine.  Fast forward to Jan of this year, Hunter still was having debilitating headaches 24/7.  The only relief she would get was if she could sleep.  We went to see a Neurologist who works with headache patients at Mayo Clinic in Jacksonville Florida.  He reviewed her extensive history and tests, and did his examination.  He then told us he thinks she has something called Ehlers -Danlos Syndrome.  "What" you say?  That's what we said.  Ehlers-Danlos Syndrome (EDS) is a connective tissue disease.  It affects every organ and  tissue in your body.  It makes your joints very elastic and you frequently sublux (bones partially sliding out of the joint) or completely dislocate joints.  This is how she tore her labrum in her shoulder playing volleyball.  After receiving the diagnosis of EDS early this year, while doing some disease research we discovered something common with EDS patients called a Chiari Malformation.  A Chiari Malformation is where part of your brain (the Cerebellum) tries to drop thru the hole in the base of your skull.  This creates pressure on nerves and blood vessels causing headaches.  So that brings us to today.  On Thursday July 12th, Hunter will have surgery to repair this Chiari Malformation.  She is going to Columbia St. Mary's in Milwaukee to the Wisconsin Chiari Center to have surgery.  They will enlarge the opening at the base of the skull, possibly stabilize her neck, put in a metal plate and do a patch of the Dura Mater.  This is the brain covering.  From there we will see what comes next!  Hopefully a happy ending with a decrease in headaches, or a complete stop to these headaches so she can resume a normal life!  We will be making updates here as we know more!  Thanks for all of the prayers and hugs that have been sent!  Keep them coming!