Patient
Janet Ledford
Patient
Fort Smith, AR
Q. How was your meningioma discovered?
A. My husband and I noticed the protruding of my right eye. I went to my internist who referred me to my ophthalmologist. He immediately recognized that I needed a neurologist.
Q. How did you source your doctor?
A. I called my aunt, who is a professor at UAMS (University of Arkansas Medical Sciences), and she took control. I had the MRI there and met with her good friend who is a neurosurgeon. He was surprised I had not had more problems as it was very large (almost 20 cm). The sphenoid wing meningioma had spread throughout the skull and encased the optic chiasm. Dr. Ossama Al-Mefty was about to join the staff at UAMS so we waited the few months until he arrived. Dr. Al-Mefty was presented to me as “the man who wrote the book on skull-based tumors,” so I knew I was to wait.
Q. What course of treatment did you undergo?
A. First craniotomy – (from front of one ear over to the top of other ear), fall of 1993 (15-hour surgery).
Second craniotomy – (same as above), spring of 1999 (four-hour surgery).
Gamma Knife Radiation – spring of 2001
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. I think waiting for the surgery was the most difficult part. I decided to try and get myself in better shape so I swam every day with a neighbor friend. It kept both my body and mind active. The fear of the unknown is always difficult.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I am having annual MRIs. The recurrent tumor is still there but the GK has done its job. While the tumor is not shrinking, it is not growing. I see a neuro-ophthalmologist on a regular basis as well. Having one eye has its own problems, like depth perception, etc – but it hasn’t slowed me. Headaches are always an issue and there’s probably not an hour of the day that goes by that I don’t have one but I continue to carry on and work at least 40 hours a week. I had a neurosurgeon who told me I would need to go back to work at 110% because employers look at people differently who have had brain surgery. I think I have done that – to a fault. Memory loss from GK is also an issue and I was warned that it was something I would have to deal with. It is usually word searching, and sometimes confusion, that I struggle with if I am extremely tired.
Q. Who were your caregivers and how did you interact with them?
A. My husband and family were my caregivers. I had my surgery about 2.5 hours from home. I went to aunt’s home for several weeks to recover. My husband is a jewel when it comes to my care and my mother is an absolute saint! She left her home in Texas to come to my aunt’s to take care of my every need. My husband, kids, mom, sisters and aunt anticipated my every need. My sisters were my moral support and remain that to this very day! My aunt is in neurological research at UAMS so if there were ever any questions she just called my neurosurgeon who lived down her street! How lucky was I?!
Q. How was your life changed by this experience?
A. I have learned about the fragility of life and was reminded of the importance of family and friends. I look at things with a whole new respect and realize how blessed I am to still be here. I also appreciate eyesight (the one I have remaining!).
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. My advice is to seek the BEST physician available – not the most convenient. That is the most important thing. If someone is to be on Watch & Wait, then stay busy! Don’t ‘use’ your brain tumor to avoid work or elicit sympathy. You only have one life so grab the gusto, grab your friends, and kiss the stars.
Q. Knowing what you know now, what would you have done differently, if anything?
A. In my case, I don’t think I could have (or would have) done anything differently. I feel I had the best medical care and followed their instructions to the best of my ability. I also feel I have tried to meet the personal goals I set out before me for recovery.
Q. How would you assess your quality of life today?
A. Quality of life isn’t always about what cards you are dealt – but it’s about how you play them. Although I may just have a full house draw, I’m going to play it like a royal flush.