Missy's Experience

Written by Missy

"Six years ago, I had brain surgery for Chiari malformation, a condition where the brain herniates out of the skull, blocking nearly 100% of CSF flow. Before surgery, I could barely walk and suffered from severe headaches and dizziness. I was also diagnosed with a tethered spinal cord and a suspected connective tissue disorder. After initial relief post-surgery, my symptoms returned. I researched and learned that more tests should have been done before my decompression surgery and that tethered cord surgery should have come first. When I revisited the neurosurgeon for the tethered cord surgery, he falsely claimed it was no longer tethered. Feeling betrayed, I stopped seeing doctors for a year and instead pursued a Bachelor's degree in community health education, graduating with a 4.0 during COVID. Two years ago, my condition worsened. My neck locked up, and I developed Tarlov cysts in my sacrum, later discovering nine more in my thoracic region. The journey with surgeons was disappointing, and now l'm battling insurance to see the only doctor who can help. I'm mostly housebound, managing severe daily pain, leg and hand tremors, and debilitating headaches. I have two boys and a husband and feel like I'm missing out on life. I struggle to attend my son's soccer games and haven't seen friends or gone to church, where I used to lead a ministry. My condition has profoundly impacted my life, but I'm determined to find a way forward!"

We were thrilled to gift Missy and friends to an unforgettable girls' weekend staycation in the charming town of Jim Thorpe! Here's a glimpse into her amazing experience:

• Missy received a relaxing gift basket filled with self-care items, snacks, and goodies to kickstart her weekend of relaxation and fun!

• She enjoyed a private painting session hosted by Danya of Not Your Grandma's Paint and Sip, where creativity flowed and memories were made!

• Missy also had the incredible opportunity with Patrick at Patrick Makes Pasta for a private pasta-making class!They learned the art of making pasta and ricotta from scratch!

• To make the pasta night complete, Missy received a basket of goodies, including homemade Italian bread, homemade pesto, and sauces and olive oil from the Jim Thorpe Olive Oil Co!

• And to top it all off, she received spending money to explore and enjoy all that downtown Jim Thorpe has to offer!