Hello, my name is Audrey (19F); on May 18th, 2021, my life took a turn after being diagnosed with a Glomus Vagale Tumor (vagal paraganglioma) of my head and neck sizing 6.6 x 3.6 x 3.2 cm. Over the last four years, I had shared concerns with my doctors over a lump that formed under my jaw. Because of the difficulty in diagnosing this disease, it was brushed aside as a swollen lymph node. Only recently (January 2021), my doctors suggested further tests after I started hearing pulsations of my heart beating over continuous periods. Glomus vagale tumors are seen as the lottery ticket of Paragangliomas because of their location and origin. In my case, my tumor interacts with my body by secreting 3-methoxytyramine (dopamine), causing erratic levels in blood pressure, heart rate, and issues with emotional and psychological well-being.

 

As the tumor grows, it damages surrounding tissues and nerves, which can cause paralysis towards the lower cranial nerves (paralysis of the diaphragm and tongue), leading to the inability to swallow and talk. It also leads to pain and weakness in shoulder strength and movement that I already experience. If left untreated, the tumor will continue to grow and damage tissues in surrounding areas. Because of the location, there is a high risk of invasion into the jugular bulb and eventually the brainstem.

 

This tumor poses a high risk for damaging nerves which is why many specialists have little practice in successfully extracting this tumor because of its location. In Canada, surgery is deemed as highly morbid, where the surgery will inevitably leave me disabled. This is why I’ve had to search in other countries that have successfully treated a patient without high morbidity post-surgery. At this time, I’ve been in contact with surgeons in the U.S. at the Saint Barnabas Medical Center in New Jersey. Their surgeons have successfully extracted many Vagal Paragangliomas in the past year with very little morbidity post-surgery. The rough estimation of costs centers around the hospital stay of 3 weeks in ICU and the surgical team of five doctors and anesthesiology, totaling around $400,000 CAD. The goal of this GoFundMe is to aid in my treatment costs to fight against this tumor and the odds given to me. If you can, please donate and share my story to better the chance for my future and those with the same diagnoses.

 

If you are interested in reading about this disease in more detail, here is a link:

https://pheopara.org/education/paraganglioma