This is a story about a girl, her brain tumor, and the doctors that refused to help.
Hello! My name is Melanie. I have always been a very active, healthy person. I loved to be outdoors and taking adventures. I was a single mother of two great kiddos that kept me active. About 6 years ago, I started to develop some disturbing symptoms that threw my life into disarray. It started as intolerance to heat. One of the things I use to love the most, being outside and active in the summer, was being taken from me in the form of nausea, tremors, and dizziness in the heat. Then came the hardcore tremors and headaches. I remember working out with a friend one afternoon. We had just finished jogging a lap, just getting warmed up, and suddenly my legs started shaking uncontrollably and I was unable to even stand up. I had to sit on the ground, in concerned confusion, until my legs stopped shaking and would hold me up again. It only took a few minutes, until my heart race slowed down, but it felt like an eternity and was the beginning of the realizations that something was truly wrong. Fast forward 2 years and now I had developed quite a list of symptoms: motion sickness, severe headaches, tremors, stuttering, balance issues, memory issues, etc. One doctor was convinced that it was presenting as MS and wanted to “watch and wait”. I was put on meds for anxiety and migraines.
As time went on, symptoms got worse. I got pregnant and had my son, JJ, in 2017. During my pregnancy, most of my symptoms went away. However, about 6 months after his birth, they all came back…worse…with more symptoms in tow. One of the scariest that showed up was severe vision issues. I would get large blind spots or go totally blind temporarily if I got too hot or over-stressed. Anytime something new showed up, it just got lumped in with the anxiety and migraines. The only thing that my doctor did was add a tremor med to my list of to take. FINALLY, after a total of 5 years of symptoms and countless tests and assessments to rule things out, my doctor decided to have an MRI done. What was found, was a mass in the geographic center of my brain. Literally attached to my Pineal Gland. It was a bittersweet moment for me. Finally figured out what was going on, but it was a mass in my brain. But what followed was nothing less than heartbreaking BS, in my opinion. I was told by my neurologist that this kind of mass is rare and does not cause symptoms. Not only did he refuse to acknowledge it as the cause, but he stopped testing me for any other possible cause. Our conversation was nothing short than something from an Abbot and Costello routine. Me: “So i definitely have a tumor on my Pineal Gland?” Dr: “Yes. But only very rare ones cause any symptoms.” …Me: “But I have a page full of symptoms that we cant find any other cause for?”…Dr: “Correct”…Me: “But the tumor isn’t causing my symptoms?”…Dr.: “No. Only the very rare ones are symptomatic.”…..Me: “But i have a tumor and symptoms?”…Dr: “Yes. But the tumor isn’t causing symptoms. Only rare ones do.” UGH!!!!! Second opinion, third opinion….so on. No one would acknowledge that this marble size mass on my Pineal Gland could possibly be the cause of all of my very obvious symptoms, while admitting that they don’t know what is causing them and refusing to test further. “Take these pills for anxiety and migraines. Avoid your triggers.”
I took my life into my own hands. I researched and researched. I reached out on social media, looking for anyone going through anything similar. I ended up finding an entire group of people, from all over the world, on social media that had a mass like mine…and symptoms like mine. All being told the same thing. The mass isn’t the cause. Live with it. The research that all of us were doing showed that there were only 3 surgeons in the world that would acknowledge and/or touch this mass. I sent all of my info, on my own without help of doctors, to a surgeon in Charleston, SC. One of the three that would take me seriously. After reviewing my scans and info, they called and wanted to see me in person. I made the 1200-mile roadtrip to Charleston. There I was told that I was not crazy and that the mass was indeed causing the issues. He recommended surgery to remove it. I sat and cried and cried. FINALLY!!! Someone willing to help. However, this wouldn’t be so easy yet. I had gotten fired from my job due to all of the symptoms I was having and not being able to complete my job tasks. With it, went my insurance. I would have to pay out of pocket for my brain surgery. I had to come up with a $29,000 down payment before they would even schedule the surgery. Many told me to give up for now, manage my symptoms and learn to avoid triggers. I learned to hate those words, “avoid your triggers”. Like that is any way to live a life? Just avoid anything you love doing and you should be ok. I am not a quitter. I had made it this far and was going to make it happen. I started a go fund me, contacted local churches and lodges, talked to businesses about fundraisers, contacted local media, etc. I even designed and created my own tshirt and stickers to sell as part of the fund raising and to help spread awareness of this type of tumor.
After ALOT of hard work, I was able to raise $13,000 on my own and my amazing parents covered the rest of the down payment. Surgery was scheduled for December 10, 2018 and a payment plan was arranged for the remainder of the bill. My family and I traveled the 1200 miles to Charleston again, this time for brain surgery. Upon removal, the tumor had already grown by 50% since they found it 4 months prior. We had to stay in Charleston for 2 1/2 weeks, to be near the hospital until my follow up appointment after surgery. I am now 8 months out. Most of my symptoms have completely resolved. I have some lingering issues, but they are from the damage that was already caused as well as from the surgery itself. Now, I offer guidance and advice to those going through this. I continue to advocate for my own follow up care, as no neurologist near me will see me now, as they feel I had an “unnecessary surgery”.
I travel all over leaving my stickers everywhere as I go. I am working on starting a nonprofit to spread awareness and education about Pineal cysts and tumors and brain injury, as well as advocating for treatment and offering advice. I want to eventually be able to help with donations and care packages for after surgery as well. If I would have listened to my doctors, I would not be here today. I want to help those that feel lost, like I did, and be the help that I wish I could have found when i needed it. Now I use art to help express myself and spread the awareness. I am getting my life back and progressing daily.
Story submitted by Melanie.
