Survivor Stories — Tricia Brown

Tricia (left) along with her sister Dolores, at The Brain Tumor Society’s Annual Race For Hope 5K last summer — just four months after her brain tumor was successfully resected.

My name is Trish and I am a brain tumor survivor. I have been truly blessed with my prognosis, as well as the outcome of my treatment. I know many are not as fortunate. I read about The Kelly Heinz-Grundner Foundation in the local newspaper and contacted Chris to offer my support by sharing my own story because I believed it could be of great benefit to others dealing with this disease.

Before I do that, here is a little background about me. I was born and raised in Dover, Delaware. I have been married to my high school sweetheart for 25 years and we have two children. Our son, Gregg, is almost 16 and our daughter, Jenny, is 23. We also have twin grandchildren, Shawn and Kiara, who are now two years old. We are also the parents of one big, dumb, but beautiful Lab/Shepherd mutt named Shelby.

I was an extremely healthy person and did not get sick very often. I probably never even had a cold for over ten years. I do have high blood pressure, but it is controlled by medication. In August, I started feeling really bad-bad enough to call the doctor, which is rare for me. Initially, I had a multitude of symptoms that all came on at once, which really had me perplexed. I felt like a hypochondriac going to my primary care physician and relaying all of my symptoms to her. They included extreme fatigue, headaches, pulse racing, tingling in my arms and hands, occasions of vomiting, and my legs giving out on me resulting in my falling. I also had strange vision issues. When I would lie down to sleep, I'd see the most brilliant color blue. During my waking hours, my vision was blurry, with constant visions of "stars" or "sun spots" everywhere.

My first doctor’s appointment was in August.  As she listened to all of my symptoms, she ordered a round of blood work to check for anything abnormal. When I returned for the results, they were all normal. My doctor then referred me to a cardiologist, at which time I obtained a 24-hour monitor to wear to record my pulse rate and any other heart-related events.  These results of the cardiac monitoring came back normal, as well. My doctor then ordered another round of blood work in which she ordered some additional tests that she didn’t really discuss with me. Once again the blood work came back normal. At this point my doctor said she could find nothing wrong with me other than the fact that my blood pressure was still running on the high side. She added another blood pressure medication to my daily regime and sent me on my way. All the while my symptoms were getting worse. It was very frustrating to say the least. I was practically living on Tylenol due to the severe headaches and struggling to stay awake for longer than a two hour stretch, before needing to sleep again. I even went so far as to tell her at my last appointment that if she could find nothing wrong with me physically then perhaps I had mental issues--stress related or something! I just wanted things to be back to normal. My body was definitely telling me that something was wrong and I couldn’t get any answers. I left my doctors office that day very discouraged and still very worried.

I took it upon myself to contact and schedule an appointment with my eye doctor.  I wanted to explore the vision issues I had. I anxiously awaited that appointment. While at the appointment, I explained what was going on both with my vision, as well as the other physical symptoms I had that couldn’t be explained. He didn’t find anything until he dilated my pupils. With my pupils dilated he was able to view the back of my eyes. He noted that my optic nerves, on both eyes, were bulging into my eyes due to the pressure generated in my brain from an unknown cause. He immediately told me that I didn’t need an eye doctor, I need a neurologist.  I remember actually being relieved that he had found something and my response was “well at least I know there is something wrong and I’m not imagining all of this.” He explained that intracranial pressure would have certainly caused all of the physical and visual symptoms that I had described to the doctor. He also explained that the skull has just enough room to house what’s “normally” there. If anything else takes up space in the brain things started getting pushed and shifted out of place and that is what was happening with my optic nerves. Left untreated he told me I would have lost my vision and possibly had a stroke. He speculated that there was one of two things going on… either I had a tumor or swelling. He doubted that I had a tumor and would bet his money on something called pseudo tumor cerebri. He explained it as swelling in the brain of unknown origin that could easily be treated with medication or, worse case scenario, a shunt. He had his secretary make an appointment with a local neurologist that he recommended.

The day I met with the neurologist he too suggested he thought it was pseudo tumor cerebri.The plan of treatment was to return in a week or so for a MRI and a spinal tap to rule out any type of infection in my spinal fluid. I was then to meet with him for the results in a few weeks.

The day arrived for my MRI. When finished, the technician took me to the waiting area and asked me to have a seat, explaining that he had to “go find something out.” Since I’d never had an MRI before, I didn’t really know if I should be worried or not. I was in the waiting room for about 15 minutes, when he returned and stated “instead of returning for your scheduled return visit with the neurologist in two weeks, he’d like to see you at 8:30 a.m. tomorrow morning,” At that point I figured they had found something. I remember going home and thinking to myself how rude it was that they were making me wait until tomorrow morning, when it’s obvious to me that they found something on the MRI! Needless to say I was angry.

I was mad and, for the first time, scared. I figured they had found a tumor or cancer. The last time I had heard the words brain tumor was when I was in high school and the young man who had the tumor did not survive. I immediately thought the worse, that I would be facing a death sentence in the morning for sure. I told my husband what had transpired and explained that I’d be returning in the morning to meet with the neurologist. We both knew they had found something. I told him that I wanted to go to the appointment alone. He repeatedly expressed that he’d like to be there with me and asked if he could come along. I refused. He was even calling me on the phone from work the following morning asking if he could meet me at the doctor’s office. I don’t know why, but this was something that I wanted to face alone. I knew the possibilities and I just needed to be presented the diagnosis and prognosis alone.  Just long enough to digest the information and then I’d share it all with him.

When I met with the neurologist the following morning he said, “Well we now know what has been causing all of the problems you have been having.” He continued, “You have a brain tumor, but it is most likely benign.” He then pulled my MRI scan up on the computer and showed me the tumor. I could see the large white blob that appeared to be located behind my left eye on the scan. He told me that based on what they could tell from the MRI that the tumor appeared to be a type of tumor called a meningioma. He explained that they are normally benign, and it could potentially be successfully removed. He suggested that I would want to see a neurosurgeon with a lot of experience with these types of tumors. He suggested I visit a Dr. Henry Brem at Johns Hopkins University in Baltimore, Maryland. He told me that Dr. Brem would probably want to remove the tumor and that he’d be able to tell me more when I met with him - like about what type of deficits I could have from the surgery, based on his experiences and the location of the tumor. Before I left, the neurologist wished me luck and said that nobody would wish for a brain tumor, but if you had to have one this particular type is the kind to have. I guess that was a little bit of the silver lining in the cloud.

So there it was….a brain tumor. The diagnosis was given to me on November 30, 2004. It had taken me four months to get a diagnosis. And I ended up getting a diagnosis only because I had taken it upon myself to pursue an appointment with my eye doctor…in hopes of at least getting an answer to my vision problems.

I immediately started gathering as much information as possible on the Internet about meningiomas, treatments, etc. The more information I have readily available to me, the more at ease I feel. I wanted to know it all.

On January 18, 2005, I had a bone flap craniotomy at Johns Hopkins University in Baltimore, Maryland. The tumor was successfully removed. I have no neurological or physical deficits at all! Dr. Brem and his team are a wonderful group of people who did an outstanding job. Going forward, I will have yearly MRI’s to ensure there is no re-growth. Meningiomas are typically slow growing tumors, however if there were any tumor cells left behind, then re-growth could occur. The MRI’s will be my peace of mind.

I truly believe that I was brought through this whole experience with flying colors for a reason. I think what Chris is doing is wonderful. It is something that is definitely needed, and great to see, at a local level. I am really sorry that I didn’t get to meet Kelly. From what I have learned about her, she and I have a lot in common and would have made great friends…everything from having a wicked sense of humor to a passion for cooking. I may not have been able to be there for you then Kelly, but I’m here for you now and will do everything and anything I can to support Chris and the Foundation. We will keep your memory alive and work hard to improve things for our fellow “noggin’ buddies” whose lives we hope to touch in the future.

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