Patient, Founder of Meningioma Mommas
Q. How was your meningioma discovered?
A. My meningioma was discovered after a frustrating journey of trying to find an explanation for my alarming health symptoms and infertility. Ultimately, it was my persistence and gut feeling that something was wrong that convinced doctors I was right, which saved my life.
Q. How did you source your doctor?
A. In my particular situation, I was immediately referred to a neurosurgeon the next day after my MRI the night previous. Had I had time, I would have definitely sought out a second opinion, which I recommend to anyone.
Q. What course of treatment did you undergo?
A. I underwent a 12-hour surgery (my only option because of my tumor’s massive size) and four months later, had a second surgery to remove excess CSF (cerebral spinal fluid).
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The not being told what to expect afterwards. I would have preferred to know the “what ifs” up front, especially the possibility of having seizures again, which happened. Also, that recovery is a life-long process. I wasn’t given any resources at the time of my diagnosis and had to seek them out on my own.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I continue to have yearly MRIs and am under the care of a neurosurgeon and neurologist. After six years post-op, I still combat daily fatigue and facial paralysis, as well as requiring an AED regimen.
Q. Who were your caregivers and how did you interact with them?
A. Primarily my husband, family and close friends who had a rotating schedule to look after me. As this was new territory for all of us, it was rife with frustrations and challenges. Definitely a learning process!
Q. How was your life changed by this experience?
A. In many dramatic ways. I quickly learned how little is known about meningioma and being a survivor has led me to use my writing abilities and find another life purpose — to heighten meningioma awareness and raise critical funding with the goal of one day finding a cure. I live day to day and am a more relaxed person now! Embrace life — have no regrets is my mantra.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Seek out a second, third, or even more opinions. Join a support group, which can guide you during all aspects of your brain tumor journey. Anticipate the not so great days — it does and will get better.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I wouldn’t have placed as much pressure on myself to return to the old me and my life the way I knew it. I would have vocalized my deepest fears and concerns earlier too, rather than suffer in silence.
Q. How would you assess your quality of life today?
A. Overall, I can’t complain. I’ve been blessed with two wonderful children and I know my limits now.