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Worst migraine of my life!

Published on March 23, 2016 in Share Your Story

Worst migraine of my life!


After a trip to Pensacola, Fl. for a quick weekend to celebrate my husband’s grandfather’s 81st birthday, I returned home sick with a stomach virus I got from my nephew, who came down with it while we were all in Florida for the birthday party. Every time my stomach lurched, my head pounded! It was extremely painful. I recovered from the virus but the headache continued. I had migraines in college but these were the worst migraines I ever experienced! I could barely walk around the house and spent my days curled up in a fetal position on my bed. It helped to take an extremely hot shower and just let the water pour over my head if I took 6 Advil prior to showering and immediately laying down after the shower. If I stayed on my feet too long, I would end up vomitting. I had a neighbor take me to the hospital and after sitting in the ER waiting room for an hour, I knew I already had an appointment with my PCP the next day, I called my sister to pick me up, promising I would be seeing the Doctor the next day anyway. My PCP did a Neurological exam on me and didn’t notice anything unusual but said he needed to send me for a CT to be sure of what was causing the headache. Once I arrived at the radiology center, the Radiologist sat me down and said he understood I didn’t have insurance but he saw “something” on the CT that he wanted to get a closer look at but needed an MRI for that. So, I knew something was wrong. He assured me that he would do the MRI for free if I could just wait an hour to perform the next image. My sister was driving me around and she agreed to wait with me. I had to lay in a part of the office that had the lights off or the pain was unbearable. I had the MRI and was told to follow up with my PCP in 2 days. Again, my sister drove me to the appointment and he gave me the news, the MRI shows there was a tumor on my right frontal lobe. I was referred to a local Neurologist, I live in a small town, the Neurologist admitted me into the local hospital and more tests were done. I was immediately put on an I.V. steroid, to reduce the swelling in my brain, and for the first time in 3 months I was pain free and happy. The Neurologist came to my hospital room and explained the problem with my tumor to myself and my parents, who were visiting from Atlanta due to my diagnoses. The problem was the tumor was in my frontal lobe on the right side of my brain but the tumor had branches extending into the left lobe so he was unable to remove all of the tumor through doing surgery. At this point we didn’t know if it was malignant and he wanted to do a biopsy to see if it was. He wanted to drill a hole, place a needle through it and take some cells out for biopsy, knowing if it was cancer, he couldn’t do anything. He said if I needed to have it removed, I would need to go to Duke or Emory. Since my parents lived in Atlanta, my dad told me to pack because he was taking me home with him. I made some calls the next day and, with connections from working in medical offices when I also lived in Atlanta, I had an appointment with a world known Neurosurgeon in 3 days. He reviewed the MRI from my local radiologist and was very concerned. I was 38 years old and he told me go home and get some things together and come right back to check myself into the hospital. He said I needed to be there so he had me already admitted when there was time open in the O.R. I had to have it removed because he felt I was too young to die from a brain tumor. I knew I was in good hands but I was still having a major anxiety attack prior to surgery. The following morning I was wheeled down to surgery. He was able to remove the tumor that he said was the size of an orange. The “branches” extending into the left lobe were zapped with radiation over the next several months, 66 treatments of radiation. I was moved from ICU to a regular room after a few weeks and then sent to inpatient rehab a couple months later. I was paralised on my left side from having surgery on the ride side of my brain and had to learn to use my left arm and leg again. I was discharged from inpatient therapy in a wheelchair once my therapists taught my parents how to do wheelchair to bed, chair and toilet transfers. I originally got around in the wheelchair only doing transfers but home therapists came to my parents house to work with me and I began walking with a hemi-walker, a walker that only requires use of the stronger side of the body. I originally had to get my dad to help me stand up from chairs and the bedside toilet but, as I got stronger, I was able to get up on my own and walk without someone standing behind me. I am 3 years away from my surgery and I still use my hemi-walker but I go to therapy twice a week and I’m back in my own home. My parents did move here from Atlanta and my dad drives me to and from therapy, since my husband has to work every day. I started using a 4 foot cane but once I lost my balance and the cane didn’t help, so I fell and broke my arm and went back to the walker that is much steadier. I still haven’t been released to work or drive but I’m getting stronger. I finished up a year of chemo, once radiation therapy was complete, and I have no signs of the cancer trying to come back. I’m on a schedule to have an MRI every 6 months and I’m just working hard to get my life back. I’m anxious to be able to go back to work and drive again. I missed my son’s entire 4th grade school year from being in the hospital and at my parents house in order to be closer to the hospital for appointments and I feel like I’m still missing so much without being able to drive. I was originally told I may never walk without assistance and I am walking with a walker, now I’m told I may never walk without the walker, so my therapist knows that is my next goal. If I have any advice for someone going through a brain tumor diagnosis, it would be to stay positive and make sure you have an excellent medical team working together on your care. Having a positive outlook and setting your own goals makes a huge difference.

Opinions expressed within this story belong solely to the author and do not reflect the views or opinions of the National Brain Tumor Society.

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