Hello my name is Bill I want to introduce you to my daughter, Sarah. She is 37 years old, a wife and mother of three boys (ages 6, 4, and 2) and also works as a Med Tech caring for seniors in a senior living facility.

In March of 2023 she was diagnosed with a Paraganglioma (Glomus Jugulare Tumor). It is a rare Neuro Endocrine Tumor that arises within the bone of the base of the skull and is secreting catecholamines (adrenaline hormones). This hormone production has caused many symptoms over many years that were attributed to “anxiety” as well as many other symptoms. Symptoms include tremors, migraines, intermittent hearing disturbances in her left ear, tingling in her face, scalp, left arm and leg, speech disturbances, dysphagia (difficulty swallowing), facial flushing, random moments of weakness accompanied by hot flashes, racing heart, chest pain, mood changing and more. The tumor is abutting the Cartoid Artery and is like termites invading her Temporal bone.

The treatment options are limited to focused radiation or surgery. Both come with risks. Nerve damage, hearing loss, need for a feeding tube, vocal cord paralysis, sacrificing the Cartoid Artery, sacrificing the Jugular Vein are some of the risks for surgery and total resection is not possible. Radiation has the potential to not work making the option of radical surgery even more risky and giving the tumor more time to grow. It also poses the risk making the tumor malignant in the future.

The journey has required numerous specialist visits (2 hour drive for most), a variety of imaging (repeat MRI’s every 4 to 6 month, PET scan, barium swallow), multiple blood draws, urinalysis, genetic testing (high likelihood of genetic component), and a trip from Michigan to New Jersey to consult with a renowned neurosurgeon and his team.

Medical and travel expenses for these specialists are building up. Sarah has been working double shifts to help pay the bills. Please help with the financial burden any way you can. Thank you