Grit & Grace

For those of you who know my sister Savannah Grace, she is a kindhearted, fiercely determined, faith filled young woman who loves her family, chickens and ducks and being on time. She is 22 years young and grew up in beautiful hills of East Tennessee.  She recently graduated from University of Tennessee Medical Center School of Radiography and has worked very hard to start her career in the radiology field despite the challenges she has been facing. Being the eldest sibling in our family I wanted to create this to help my baby sister. Although I am my sisters’ number one fan and supporter I live in a different state and feel a bit helpless when it comes to helping her get through day to day. We were raised by a single mother which taught us how to be strong and depend on ourselves in the hard times. Asking for help is not our first resort so it has been hard to reach out. However, I want her story to be heard and to bring more awareness to her condition that will hopefully help others in the process. 

A little bit about her history:

For several years, Savannah had been struggling with the onset of intense headaches very similar to migraines, light sensitivity, sharp pain behind her eyes, neck and shoulder pain, and numbness in her arm and hands.  She has been to several doctors searching for answers but because she appears to be a healthy, active young adult on the outside, her symptoms were dismissed.  The symptoms progressively have gotten worse and new symptoms started appearing, like difficulty swallowing, getting choked easily, and having difficulty with balance.  On the worst days, her symptoms mimic a stroke such as facial drawing, slurred speech and numbness in her legs and feet.  With a little nudge from her mom, she returned to her Primary Care Doctor and insisted on further testing. An MRI was ordered, and it revealed the hidden answer.  She was diagnosed with a Chiari Malformation Type 1.   In other words, she was told "Your brain is 8 mm out of your skull into your spinal canal and it is incurable".  For a 22-year-old who was months away from graduating college , this news was devastating.

A little bit about Chiari:

Chiari Malformation is a rare structural abnormality of the cerebellum (the part of the brain that controls balance) and the skull.   The malformation occurs when the lower part of the cerebellum extends below the foramen magnum (the large hole at the base of the skull which allows passage of the spinal cord).  Most people don’t know they have Chiari until symptoms appear in later childhood or early adulthood as the skull and tissues of the neck mature with skeletal growth.  Although the exact cause of Chiari is unknown, it is thought to be present at birth (congenital).  Symptoms vary among “Chiarians” as they most commonly experience headaches that get worse with exertion including exercise, coughing, sneezing, laughing, neck pain, dizziness, tingling/ numbness usually in the hands, unsteady gait, loss of fine motor skills, difficulty swallowing or choking on liquids.  

A little bit about her treatment plan:

For people who experience more severe symptoms, surgery is the only treatment option available to stop the progression of damage to the Central Nervous Symptom.  Savannah had difficulty finding a Chiari Specialist in her area and to this present day, she is still on the waiting list to be seen for a Neurologists in Knoxville.  We were very fortunate to find a top leading Chiari Specialist in New York who was willing to take her case months ago.  (We secretly think he and his staff like our southern charm). His team has worked with other specialist in Tennessee to get the testing she needed and to rule out any other possible causes.   For the first time since Savannah sought treatment, she felt heard.  He listened compassionately and immediately said, “oh, that’s classic Chiari” like he sees this all the time.   That was a huge relief.  He understood the importance of her desire to finish school and worked out a plan for her to have surgery following graduation.   

The next step:

Savannah and our mom will be traveling to New York in September for surgery.  She will have what is called decompression surgery (brain surgery) where part of the skull is removed to restore normal flow of cerebral spinal fluid to the area where the spinal cord passes to connect to the brain.  There are some other details to the surgery, but we won’t bore you with all the technical terms.  She will officially become what is known to the world of Chiari as a “zipperhead”.    Following surgery, she will stay in the Neuro ICU at NY Presbyterian Hospital and will transition to their Neuro Unit once stable.  When Savannah’s pain is managed, and she can perform activities of daily living on her own she will be discharged from the hospital and will be required to stay in New York for a minimum of 10 days to ensure there are no complications from the surgery.   With the Covid Precautions varying per state, the hospital has closed their waiting areas and limited visitation so Savannah’s mom will have to stay in a hotel nearby during her hospital stay.  

How you can help:

First and foremost, thoughts and prayers are vastly welcomed. The cost of brain surgery, hospitalization, travel, lodging, and recovery is overbearing for a 22-year-old even with insurance and family support.  Any donations will be used to cover the cost incurred from this procedure.  If you ask anyone who knows Savannah they will tell you that she is the humblest young lady and never asks for help.  Instead, she thrives from helping and taking care of others.  As a family we want Savannah to have the best chance at a quality life.  She has an entire future ahead of her and we know she will overcome this and do great things!  If you feel led to contribute in anyway, know that our family is beyond grateful and so very appreciative.   You just may be helping a young lady who will return the favor of kindness. Thank you. ❤️

#Chiariwarriors
#Chiarians
#Zipperheads
#purpleishercolor
#Herfightisourfight