Our Family’s Chiari Story

            I was diagnosed with Chiari at age 25, after a lifetime of terrible headaches, and years of misdiagnoses. I’d been diagnosed with allergies, tension headaches, and sinus issues before my Chiari was finally discovered. I even underwent surgery to fix my sinus issues only a year prior to my Chiari diagnosis. My first Chiari surgery was done by a neurosurgeon who wasn’t familiar with all of the complexities of this condition, (nor was I, at the time), and I ended up having multiple complications, requiring another 17 surgeries over the next 6 years. Unfortunately, I have since discovered that this is not at all uncommon. Many patients with Chiari, like myself, have several “comorbidities”, such as Ehlers-Danlos Syndrome and POTS, which can complicate treatment and management.

            My son, Jayden, at the age of 5, began to complain of regular headaches, especially upon exertion or when laughing too hard. Luckily, knowing my history, his pediatrician ordered an MRI without any hesitation. Unfortunately, it did reveal a Chiari Malformation. I knew that we needed to find a Pediatric Neurosurgeon with Chiari experience, so I began the long process of looking for one, sending medical records, and getting insurance approval for an out-of-state consultation. My younger son, Sean, now 6-years-old, has often complained of a “headache and tummy-ache”. He was originally diagnosed with pediatric migraines, but I always had my suspicions. Our recent appointment with the Chiari specialist, and the MRIs they had done there, revealed that he has Chiari, as well. We also found that Jayden’s Chiari has progressed slightly since he was first diagnosed. 

            As a result of Chiari, we all deal with frequent, severe headaches. I am still unable to work due to the unpredictability of mine, which are often debilitating. There are days when the most I can do is get the kids off to school, then rest on the couch all day. There was a time, before I began my Botox treatments, when I was on some pretty heavy pain medications, and still ended up in the ER every few months with a headache that required IV pain medicine to “break the cycle”. My children and I have missed Holidays and Special Events due to our headaches. My children miss more school than the average student. Both of them will likely need brain surgery at some point, and are on more medications than any child their age should be. I am thankful that they have the benefit of my experience in that I know how vital it is to have them under the care of someone familiar with all of the intricacies of this condition, and with all of the other conditions that so often accompany Chiari. Many others are not so lucky.   

 

So here we are today with  ASAP Walk & Roll For A Cure of Central Florida

I need your help to help meet our goal for ASAP Walk & Roll For A Cure of Central Florida to be held Saturday,  September 25, 2021 at the Northwest Recreation Complex . We will be at the pavilion by the lake. We can't wait to see you ! 

Many Thanks !
The Adair Family