My name is Amanda and in November of 2021, I was diagnosed with an Atypical Grade II meningioma brain tumor.
This is my story.
Late April of 2021, I underwent surgery on my ankle and in the following weeks I began not feeling like myself. I have a history of experiencing negative reactions to medication, so I thought that I was having a delayed reaction to the anesthesia used during my surgery. It almost felt as if I had brain fog, or holes in my memory. Therefore, I shrugged it off and continued my day to day routines. Not to my knowledge, or understanding, as the months went by I started to worsen.
I was a very punctual, intentional and hard working individual, but my motivation, work ethic, memory, essentially all the things that make me who I am, started to drastically change. I started to sleep through my alarm and arrived late to work by a couple hours, lost track of what time I was scheduled to leave work, forgot to eat or drink water, or even remember if I took my lunch break. I began to live in a “zoned out” state of mind. At home, I would forget my breakfast in the microwave, leave the groceries in the garage, sit on the couch in silence for hours without doing anything. I was not upholding my responsibilities around the house, such as cooking which I thoroughly enjoy. I just lacked motivation in every aspect of my life. My family thought I was depressed or had early onset dementia, but no one, including myself, really knew what was wrong with me. My husband tried to enroll me in the EAP program, a program which provides mental health counseling, offered through my employer, but I was not able to schedule an appointment sooner than November. Unfortunately, I was released from my position the first week of October 2021.
My husband was watching me lose grip of reality, and went with me to a scheduled appointment to see my Primary Care Provider, PCP, on October 29th, 2021. During this appointment, we explained to my doctor the situation, and my husband shared what he had been witnessing over the last several months. My doctor ran some tests, and the one that rang all the bells was the Cognitive Memory Test. The results of this test were shocking to my husband, as I scored one point above a dementia diagnosis. My husband was pulled out of the room and my PCP stated that the results were concerning and I needed to be taken in for a head MRI. My husband made the appointment, but due to COVID my MRI was scheduled a couple weeks out. During the time after my doctor appointment and before my scheduled MRI, I began to rapidly worsen.
On November 4th, 2021, our wedding anniversary, things took a turn for the worse. That day my husband was at work, and he had called to check in on me. He says I was speaking incoherently
and then went unresponsive. He called a half hour later and the same thing happened. He rushed home to find me in a terrible state which led him to take me to the Emergency Room. Around midnight, I was diagnosed with a brain tumor, 8.1 x 7.7 x 6.9 cm in size located on my frontal lobe. That is about the size of a grapefruit. I needed brain surgery immediately, but due to health insurance issues caused by losing my job my surgery was pushed out until November 18th, 2021.
Thankfully, the surgery was successful at removing the bulk of the tumor. Fast forward a couple of days, and I was on the long road to recovery. To my family's surprise, I was discharged from the hospital the Wednesday before Thanksgiving. A week or so later, we found out I had a grade
II meningioma. In layman's terms, the brain tumor is atypical or benign but could turn cancerous. I began taking medications to make the symptoms from the resection tolerable.
February 2021, the results from a follow up MRI came back and showed that there were 2 foci of the main tumor left and one of the foci was beginning to grow back already. The radiologist and neurosurgeon started me on a six week radiation treatment with aims to shrink and or stop the growing foci. I began radiation in late February and completed my treatment on April 20, 2022. During this time, I learned how to live life while navigating the impacts this tumor made in my life. Each day presents itself with a new set of challenges, but I have an amazing support system consisting of my family and friends.
My scan from June 8th, 2022 presented that the previously growing foci shrunk by 4mm. My next MRI is scheduled for September 2, 2022. I am taking each day as it comes, living life to the fullest and focusing on being positive on this unforeseen journey I have embarked on.
SEPTEMBER ROUTINE SCAN UPDATE
As my journey continues down this new path of life we continue to learn. My new MRI scans showed that my residual parafalcine tumor increased in size from the scans done in June. This tumor is a meningioma WHO Grade II showing signs of a Grade III in ways. To stay ahead of the growth, my Team of Doctors have recommended a radioosurgery procedure (SRS). I will go through simulation on 9/12/22 to be fit for a new mask and the procedure will be done on 9/26/22.
In the meantime, I possibly had a seizure while driving and went off of a backroad near our home and hit a tree.. Thankfully it was a single car accident. I do not recall anything right before, during, or immediately after the accident. I have been on anti-seizure medication and will have an EEG done on 9/19/22 to check for any current seizure activity. We learned that my EEG will come back abnormal because I had brain surgery so they look for current seizure activity. The neurologist started me on a new medication to control my headaches that was originally used as an anti seizure medication (so I am double covered). Seizures are a common side effect from parafalcine brain tumors as well as other brain tumors.
DECEMBER ROUTINE SCAN AND MARCH ROUTINE SCAN HAVE STAYED STABLE SINCE THE SRS TREATMENT!!!
I will remain on the 3 month scan plan. My Multidisciplinary Team and us hope to see this tumor continue to "hibernate" as I call it. The Multidisciplinary Team likes to say that they are staying ahead of any new growth or recurrence! Next scan will be June 20th! For now the focus is on Brain Tumor Awareness Month and Advocating for the Brain Tumor Community!
2023 UPDATES
The rest of 2023 went along prettty well. All other scans done on the 3 Month plan showed stability with the tumor size from the SRS procedure. At my December 2023 appointment we discussed HBOT (Hyperbaric Oxygen treatment) for some radiation damage that my brain tissue had experienced throughout treatment. It was the 2nd time it was brought to our attention. After much research, I decided to try it.
2024 UPDATES
I attended 22 of 40 sessions and am on the wait list to finish the last sessions in the future if I feel the need to. Right now my neurologist and I are concentrating on Speech Therapy to help with my communication skills. My last MRI in March 2024 showed stability with the tumor and encephalomacia in the frontal lobes. I am still attending Speech Therapy. Plus it gives my ears a break! I was told I could go 6 MONTHS until my next MRI!!! Which was reallly exciting news for us!!!!
REMEMBER #GRAYMAY FOR BRAIN TUMOR AWARENESS MONTH!!!!!!!
A frontal lobe resection is when the neurosurgeon will do a craniotomy to remove the tumor.
My neurosurgeon was able to remove most of my tumor but two foci of the tumor were unable to be removed. One of those foci started growing again when I had my 3 month routine scan. I was referred to raidiation therapy 5 days per week for 6 weeks.
One of the foci (aka tumors) shrunk from the radiation therapy, however they still remain. As of June 8th, 2022 they were both still there. I go for my next routine MRI scans in September. I will find out more then.
Meningioma Facts and Knowns:
Mahatma Gandhi
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