Patient
Nancy Conn-Levin
Patient
Ocean, NJ
Q. How was your meningioma discovered?
A. My meningioma was discovered during diagnostic testing, which was suggested following visual changes I experienced from the tumor. The MRI scan included in that group of tests clearly showed the meningioma. The visual changes developed gradually and I was unaware that they might have indicated the presence of a brain tumor. Receiving that unexpected diagnosis was a memorable surprise.
My meningioma was discovered during diagnostic testing, which was suggested following visual changes I experienced from the tumor. The MRI scan included in that group of tests clearly showed the meningioma. The visual changes developed gradually and I was unaware that they might have indicated the presence of a brain tumor. Receiving that unexpected diagnosis was a memorable surprise.
Q. How did you source your doctor?
A. Presumably, this question refers to the neurosurgeon who operated on me. I found him through a family member, who was part of the teaching faculty at a major metropolitan medical center with a large brain tumor program. My ophthalmologist was the first person who suspected the meningioma, and he sent me to a neuro-ophthalmologist who arranged for the MRI.
Q. What course of treatment did you undergo?
A. I had a craniotomy and cranioplasty, with surgical excision of the meningioma.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. At the time of my meningioma diagnosis and treatment (almost eleven years ago), I was unable to find local support or information about meningiomas that would help me make choices about how to proceed. That isolation and lack of a sense of community was the reason I chose to focus my career as a health educator toward working with others affected by brain tumors. It also led to my creating an online support group (The Meningioma List), which was started in 1999. The group continues to thrive more than six years later. I also co-founded a local brain tumor support group in 2003, which I still facilitate. That group provides services to patients, long time survivors and family members of those with any type of brain tumor.
Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I have follow up MRI scans at least once a year (more often when symptoms occur and/or any changes appear in the scans). There are relatively minor side effects that cause me to make adaptations in my life. However, these are not apparent to most of the people who know me. Most of all, I feel incredibly blessed to be able to do the work I do and help so many other people affected by all types of brain tumors.
Q. Who were your caregivers and how did you interact with them?
A. My husband was my primary caregiver after surgery and continues to be a source of all types of support. At the time of my brain surgery, our daughter was 17 and living at home with us. She was also very helpful, particularly before I was able to begin driving independently again. Although our daughter has her own home now, she is still very caring and supportive.
Q. How was your life changed by this experience?
A. Perhaps the most significant change in my life was the loss of my identity as a “healthy” person who had not encountered a serious illness. I had always had a positive attitude about life, but found myself becoming even more appreciative and aware of everyday blessings after recovering from brain surgery. While I do experience more fatigue and other “invisible” changes, my awareness of how much worse this situation could have been keeps me feeling very fortunate every day. Particularly after meeting literally hundreds of others who have had meningiomas (some of whom have since passed on from their tumors), I recognize that there is a lot of uncertainty related to how any individual is affected by this diagnosis.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. The most important advice would be to learn as much as possible about meningioma issues, and get at least one “second opinion” about treatment options. Each person’s situation is unique and there are many choices about where, how, and with whom to find the best treatment for that individual. Thankfully, the Brain Science Foundation has comprehensive educational materials on its website, which make this process so much easier than it was at the time of my diagnosis. Experiencing the need for that type of information was the primary reason I wanted to create those materials!
Q. Knowing what you know now, what would you have done differently, if anything?
A. Like many people, I thought it would be best to have treatment relatively close to home (within 90 minutes) so it would be convenient for my family. If I ever need to have brain tumor treatment again in the future, I would be more likely to find the best specialist and travel to the brain tumor center where that person was affiliated. Also, at the time of my surgery, I was unaware of the importance of having a neuropsychological evaluation, especially prior to surgery. If that had been done, it would have been easier to document the changes I experienced and develop a rehabilitation strategy. Although I did undergo this testing many years after my surgery, by that time I had already developed personal coping strategies for most of the deficits. It would have been much easier and more efficient to be able to take advantage of professional help with this, rather than figuring things out myself over a long period of time.
Q. How would you assess your quality of life today?
A. My quality of life is excellent! I look forward to continuing to be a proactive meningioma survivor who is able to help other people in a variety of ways. As a health educator, author of health education materials, and support group facilitator, I feel very fortunate that my personal experiences can be useful as a means to offer information, support and encouragement to people all over the world who are affected by various types of brain tumors.