I’ve always had hemiplegic migraines - the left side of my body tingles, and then becomes numb with a quick onset and a migraine that can last for hours. In September of 2019, I noticed certain changes, experiencing my “aura” but no migraine, right eye changes, balance and coordination issues and waves of nausea. I met with my primary care who conducted a neurological exam which I failed miserably. I was advised to see an ophthalmologist who jokingly said “I’m not saying you have a brain tumor but I would get an MRI” due to my right optic nerve being inflamed. To rule out what my primary care physician thought was muscular sclerosis, I had an MRI which revealed a pineal cyst (5mm at the time) which was determined to be “insignificant” and not causing my symptoms.

Shortly after, I became pregnant with my son, Weston. During my pregnancy I experienced the absolute worst migraines of my life to which I became a “regular” at the local freestanding Emergency Department. I was told repeatedly my pineal cyst was not causing any of my migraines and that it was all in my head.

I met with a neurosurgeon here in Richmond multiple times, who assured me that the pea in my head was just that. As a registered nurse, I faithfully advocated for myself and requested more MRIs due to my symptoms increasing. In March of 2021 my pineal cyst had grown to 10mm and due to the physician “not believing” the report was accurate, ordered another one 3 months later. During that MRI, my pineal cyst became a pineocytoma/pineal parenchymal tumor with intermediate differentiation at 13mm with a prior hemorrhage at some point and tectal plate compression. She again told me “not to worry”.

I became very educated in an area that seemed to have very little medical information. The pineal gland is apart of the endocrine system and often referred to as the “third eye” of the human body. The main function is regulating circadian sleep patterns along with melatonin, and some reproductive hormones. Anyone who personally knows me knows I can be up for days on end or the exact opposite - due to no melatonin production in this region which is absolutely exhausting.

I joined a pineal cyst/tumor group on Facebook to share some of my symptoms and feel at least heard by someone or anyone and that’s when I stumbled upon Dr Sunil Patel at MUSC - a true pioneer for research with pineal gland as well as cysts and tumors of that region. I immediately booked an appointment with him and drove 9.5 hours to spend 45 minutes with him. During my visit, he explained I met every criteria for a symptomatic pineal cyst/tumor. It was also during that time that I decided to leave my brain alone and that there would be no surgery because my son was only 9 months old at the time.

Fast forward to November of 2022 - I began experiencing debilitating waves of nausea, Supra ventricular tachycardia (sometimes reaching 180 just sitting), declining depth perception and proprioception, staying awake for 40+ hours on end (even with taking Benadryl to force myself to sleep), and sudden severe headaches that can last weeks. After my 6th MRI over 3 years, the pea in my head has grown to 19mm (yes almost 2cm, specifically the size of a penny) and is still compressing my tectal plate - which if becomes even more compressed, can limit the normal regulation of spinal fluid and cause hydrocephalus which is an emergency surgery to reduce pressure build up and results in a brain shunt. Dr Patel personally called me from his office to discuss removal and recovery - my surgery is scheduled for June 19th 2023 at the Medical University of South Carolina. Once removed, a pathology report of my tumor will be completed.

Even more unfortunate, my insurance company has denied my surgery due to my surgeon being out of network and not having any out of network benefits - I will be paying 100% out of pocket for the total removal of my pineal gland and all that comes with it. My surgery should only take about an hour and a half, one that Dr Patel has performed at least 50 times and perfected without the need of a craniotomy. I will have to remain in South Carolina for a minimum of 10 days with 2-3 in the ICU before returning home to Virginia to finish recovery with my favorite tiny human by my side. I will not be able to return back to work until about 10-12 weeks. During this time, I will go without pay from both of my employers.

If you have read this far, thank you. I have struggled tremendously for the last 3 years and this seems to be my light at the end of this tunnel. If you can give anything, even a positive thought for my surgery, my neurosurgeon who will literally hold my head in his hands, my recovery, the strength for my family (especially my 3 year old son), that will be more enough.

“God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference, living one day at a time; enjoying one moment at a time; taking this world as it is and not as I would have it; trusting that You will make all things right if I surrender to Your will; so that I may be reasonably happy in this life and supremely happy with You forever in the next. Amen.”