Stuart Gilkison, 38, patient from Madison, WI
Q. How was your meningioma discovered?
A. Three years ago I was beginning to have some problems with my vision. Occasionally I would go "cross eyed" and would have periods of double vision. For a while I chalked it up to the stress of a new job and the overuse of a computer. My wife encouraged me to get tested. I met with a neuro-opthamologist who put me through a litany of tests. After two failed visual field tests and taking into consideration my symptoms he ordered a MRI. He was looking to see if I had an Optic Glioma. I received the call about my meningioma on July 3rd, 2003.
Q. How did you source your doctor?
A. Under my HMO I have no choice of specialists. Dr. Badie was chosen for me. In the course of my research I determined he was the best of all possible choices.
Q. What course of treatment did you undergo?
A. Dr. Badie recommended Wait and Watch. Due to some insurance questions I decided to go for surgery. Dr. Badie said that if the stress of the tumor
was too much for me to handle that he would gladly remove it regardless of his recommendation. I had the entire tumor removed. Since it was small, and
since I was already on an anti-seizure medication there were no changes to my routine except for some pain medication.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The most difficult part of this journey for me is how the diagnosis of a meningioma related to my diagnosis of neurofibromatosis (NF). Up to that
point I considered myself to have a minor case of NF. Now I was left to wonder if I would have other major tumors along my central nervous system.
In addition, a post surgical infection (pseudomonas) led me to appreciate my life and journey more. Little things do not bother me and I tend to have a
more joyous, humor-filled day.
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. Then came the complications. My first complication was shortly after the surgery. I began to bleed profusely. Apparently this was old blood that
could not clot. I visited the emergency room and they got things under control. A few antibiotics and stitches solved that problem.
Ever since my surgery I noticed a pocket of fluid adjacent to my incision. Despite concerns, I was always told by my neurosurgeon that this was nothing to worry about. Fast forward two years later. I was sitting at home watching television before work. After a hearty sneeze I discovered that my head ruptured and I was bleeding profusely. A call to my doc was placed and I was assured that all was well and that I needn't worry. The rupturing continued
for several months. One Sunday afternoon a tiny titanium screw that was used to hold my bone flap in place came out of my head. Even after a trip to the
OR my doc was not especially worried. He placed me on an antibiotic and thought that the rupturing was due to a random hair or stitch that still
hadn't dissolved from the original surgery. He said that he would remove my parts if I continued to have problems.
After several more weeks of problems I had my second surgery. Surgery went well, but just before I left the hospital I was informed by infectious
diseased that I had an infection called Pseudomonas. The infection had caused my body to reject the hardware. I had to follow up my surgery with 6
weeks of IV antibiotics through a PICC line.
Q. Who were your caregivers and how did you interact with them?
A. I had the support of my wife and daughter as well as a close circle of friends in my area. I had to learn to accept help for both surgeries. I took
2 weeks off of work. I had lifting and driving restrictions, which made it difficult to be a father of a young daughter.
Q. How was your life changed by this experience?
A. I am much more aware of my own health and am a much better caretaker. To a certain extent I am hyper-sensitive to odd feelings and have become a great health advocate to myself and for my family.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Since this is such a personal journey it is difficult to throw out a blanket statement. Trust your feelings. If you need help ask for help. If people
offer you help accept it with a smile. If you want to find a support group there are many to choose from.
Q. Knowing what you know now, what would you have done differently, if anything?
A. I choose not to live life with any regrets. Despite infections and migraines I do believe that I made the correct decision.
Q. How would you assess your quality of life today?
A. I have a great quality of life today. I believe that there is no hurdle that I cannot clear. I have great support and plenty of people that I can talk with when there is a new symptom that presents itself.
