My Symptoms Were Mysterious—Until I Was Diagnosed With a Brain Tumor
It was a beautiful October morning on Long Island, NY. My alarm clock went off, as it did everyday at 6:45am. I was a 24-year-old preschool teacher back to teaching in person after months of being online due to the pandemic. There was a sense of normalcy again, despite mask wearing and social distancing. The world was seeing light at the end of the tunnel. I reached my arm across my body to silence my alarm and my arm was so heavy I hit myself in the face. I quickly realized I couldn’t feel my arm, but I wasn’t too worried. I’d probably slept on it the wrong way.
I stumbled out of bed and attempted to brush my teeth, still my arm was numb. “Hmm,” I remember thinking, “...this is a bit strange.” I grabbed my things in a hurry and ran out the door. My arm remained numb and tingly for the remainder of the day, and not just the rest of that day, for the weeks that would soon follow.
I'll admit—I'm a self-proclaimed hypochondriac. I am known to be a “Googler.” I self diagnose myself all the time on WebMd and other similar sites. I didn’t tell my family about the numbness because I didn’t want them to think I was spiraling—yet again—into a deep rabbit hole of self diagnoses.
It wasn’t until one day in November that I became more worried about what was going on. I began dropping things all day at work. Everything was slipping right out of my grip. Then when I got home, I began slurring my words—it was as if I had marbles in my mouth. This scared me.
I immediately called my parents who were equally as concerned, then made an appointment with a neurologist as soon as I could fit into his schedule.
When it came time for my appointment, I was fairly confident all would be fine. I was envisioning myself going home with a totally clean bill of health and hearing once again from my friends and family that I “just need to relax.”
After explaining my symptoms to the doctor, he didn’t express much concern but said he would send me for an MRI of the brain, “to err on the side of caution.”
Walking in for my brain scan, it was intimidating to see the giant white tunnel positioned in the middle of the stark room. After laying down on the base of the machine, my head was secured with foam wedges snuggly nestled into a cage so I wouldn’t move. Slowly, they moved the machine back. Feeling myself start to panic, I took some slow deep breaths and reminded myself that this would all be over soon. What I didn’t realize was this would only be my first MRI of many. About 45 minutes later, I was removed from the machine.
I left the office and went on my way, only to be met by the ringing of my phone later that Friday night. It was my doctor. He explained how he found a small tumor, also known as a Cavernous Angioma (CCM,) in my brain. Cavernous Angiomas are found in 0.5% of the population and are almost always benign. I was, unfortunately, part of the 40% of people who experience neurological symptoms, as mine had hemorrhaged, causing irritation in my brain. I didn’t hear much of what he said after that. My head was spinning and my ears were ringing, I was in a full sweat.
I asked, “So, what now?” to which he replied that we would continue to monitor it. He told me that these tumors can just bleed once and may never bleed again. He said to live life as I normally would and not think too much about this. How was I supposed to do that?
Fast forward to April. I experienced the worst migraine of my life–and I’ve had many. It was the middle of the night when it struck, waking me up from a dead sleep. The piercing pain pounded in my head. I thought I was going to die. I knew in that moment that the tumor was bleeding. I texted my doctor who told me to, “try Tylenol.” But Tylenol wasn’t cutting it. I wanted answers.
After calling in sick to work. I called my doctor in the morning and demanded another MRI. I’m not typically the aggressive type, but I knew something was really wrong. He agreed, and back in the machine I went.
Sure enough, I was right. Scans showed that not only had it bled again, but my tumor had doubled in size. At this point, I realized I needed to take matters into my own hands.
I spent my nights researching my condition. After realizing that surgery was a very good possibility, I consulted with a few neurosurgeons before finally deciding on Dr. Philip Stieg at Weill Cornell in New York.
At this point, while my CCM was no longer actively bleeding, there was significant staining to the tissue in the surrounding area. The chances of the tumor bleeding again were high, considering it had already bled twice in a short span of time. As Dr. Stieg put it, my CCM, “would only continue to grow.” Adding that if I were his daughter, he would have it removed.
I booked my surgery the day I met Dr. Stieg–a testament to not only what an incredible surgeon he is, but how calm and at peace he made me feel. I made the decision right there in his office, that I was going to handle this situation with positivity. There was no other option. Sure, I could sulk and cry about it, but that wouldn’t get me anywhere.
On July 7, 2021, I went in for my craniotomy. Due to COVID, only one person was allowed in the hospital with me. So I said goodbye to my mom and sister in the parking lot and made my way into the building with my dad. After spending some time in the pre-op area, I was taken for one more MRI. I was almost there: The end of the road was in sight.
Finally, it was go time. A nurse came to bring me to the operating room. I said goodbye to my dad. “I’ve got this!” I said as they wheeled me out, determined to stay positive.
There I was, standing outside the double doors of the operating room (OR.) Dr. Stieg came into the hallway to tell me that my tumor had tripled in size since my scan just last month. Had it been left as it was, I could’ve had a major bleed with three times the amount of blood, which could have caused a major stroke or even death.
I walked into the cold OR and hoisted myself up onto the metal table. A kind nurse said she would soon be giving me a drug that would make me relax. I closed my eyes as they injected it into my veins. That is the last thing I remember.
Next thing I know. I had survived a six hour brain surgery and was recovering in the Neuro ICU. My Mom and Dad were both there with teary eyes to greet me. However, I soon realized I couldn’t speak. Dr. Stieg had warned me that this could be a possibility temporarily after surgery, because of where the lesion was located in my brain.
Losing my ability to speak was extremely terrifying and frustrating. I was having full thoughts, but no words were coming out of my mouth. This lasted for a few weeks into my recovery.
After I was released from the hospital and sent home, I needed everything done for me. Showering, eating, putting on clothes, and taking my medication were all things I now needed help with. The independent 24 year old girl I once was, was now temporarily gone. I was completely dependent on my family. I began speech, occupational, and physical therapies, two times per week for a month.
Today I am happy to report that my scans are all clear. All that remains is a hole in my brain—a reminder of what was once there. However, I still need to go for an annual MRI to make sure nothing has grown in other areas of my brain. I am speaking again, I am walking without any assistance, and feeding myself. I am now finally, living life as I normally would. And there is really no better feeling than that.
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