Getting out of her car one Sunday in November 2006, Linda Fullerton bumped her head on the car’s door frame. The stinging sensation was annoying for a moment and then it was gone. Many of us have hit our heads but in Linda’s case the incident was freakishly more dangerous than usual. In fact, that small bump on the head would change the rest of her life - forever.
A few days after the accident Linda began experiencing severe headaches and found that a knot-like bump had formed on the back of her skull. Calling her doctor, she was told that it was a blood clot and that it would be at least a month until the blood reabsorbed back into her system. Taking Advil for the headaches, Linda waited for the clot to disappear. A week or so later when the pain worsened instead of getting better, she again called her physician. This time Linda was referred to an after-hours doctor who confirmed that she did indeed have a hematoma (blood clot) and then sent her home to wait it out. Linda tried to do as she was told but by the beginning of December the clot had grown so large that it was visible from across the room. Linda’s doctor ordered a CAT scan to check for a skull fracture. The CAT scan revealed no fracture and, ironically, because a contrast medium was not ordered as part of the scan, the test didn’t even show the hematoma that was most definitely there and visible to the naked eye. The doctor wasn’t worried and it seemed like good news that she had no fracture. So, Linda was sent home once more to let the hematoma do its thing and disappear.
Over the course of the next month Linda experienced pains unlike anything she had ever felt before. She went to the emergency room several times, she saw neurologists; she went to a pain clinic; she was put on every painkiller known to man …nothing helped.
“The intense pain had many different forms to it all at the same time - electric shock-like sensations, throbbing, stabbing, drilling, etc. I remember often getting down on my knees, crying in agony and begging God to take my life so the horrible pain would end.” Linda had never been deeply depressed and was not a big fan of suicide. This was the first time in her life that she had considered suicide and she could now actually understand why others have taken their lives due to constant pain. Her head just HURT all the time and there seemed to be no relief from her suffering, short of death. Physically and mentally exhausted, she had tried everything to rid herself of the constant pain. She had even tried alternative medicine as a solution. She would apply a topical mixture of St. John’s Wort, Arnica oil, and Aloe Vera gel to her head every day. The greasy mixture smelled horrible and left her long hair looking ratty and unkempt, but she was willing to try anything to make the pain go away.
Despite her lack of sleep, Linda continued going to workday in and day out (even with her greasy, nasty hair!), missing only one day due to her ailment. However, by the beginning of 1997, she was just plain worn out. The nausea from her pain medications left her unable to eat much of anything except for Granny Smith apples. When she looked in the mirror, she saw the look of death on her own face. Her eyes were glazed over and she felt like a zombie. Linda didn’t know how much longer she could take the pain. Thoughts of suicide became stronger and stronger. She didn’t have a clue where to turn, she just knew that something was desperately wrong with her and nobody in the medical field could figure out what it was. For months now, she had gone through life feeling like something was eating her brain.
Hanging out at her boyfriend Arnold’s house on January 12, 1997, Linda was having a great deal of trouble walking. It was about two months after she had bumped her head and the hematoma and the pain had still not disappeared. Every time she tried to walk, it felt like a huge force from above was pushing her head to the floor. That day, her pain was particularly excruciating. Feeling fried and exhausted, Linda went to lie down on Arnold’s bed. The next thing she knew, she was waking up in the ICU at the hospital with tubes hanging out all over her and a reverse Mohawk haircut.
Having no recollection of what happened for those three days, she later learned the whole story. Apparently, Linda had slipped into a coma while lying on Arnold’s bed. Realizing that she was in trouble, Arnold had called her doctor who had told him to let her sleep it off and call him back in the morning. When Linda had not risen the next day, Arnold took her into the doctor’s office where she was diagnosed as “probably suffering from a drug overdose” and sent home, despite the fact that she was still not lucid and had been dragged in by Arnold because she wasn’t walking on her own. Arnold told her that when she still hadn’t snapped out of the coma by Tuesday morning he was both frantic and furious. He’d called for an ambulance to bring Linda to the hospital. This time, the neurologist ordered a CAT scan WITH the contrast medium. Not only did Linda’s hematoma appear but so too did an unidentified white mass in her cerebellum. Still comatose, Linda had been ordered into emergency surgery where the doctors found that a major infection called Osteomyelitis had been eating away at her skull. Additionally, the hematoma had become infected with staph and two different forms of strep. As it turned out, that feeling Linda had was right. Something was eating her brain!
“She didn’t have a clue where to turn, she just knew that something was desperately wrong with her and nobody in the medical field could figure out what it was. For months now, she had gone through life feeling like something was eating her brain.”
Linda spent the next two weeks in the hospital as doctors and staff monitored her to make sure the infection was gone. She was then sent home with an IV Pic line implanted in her arm so that she could administer antibiotics to herself several times a day for the next month. By March, she felt almost ready to return to work. That is, until the horrible pain returned in her neck and back of her head. Linda was frightened. Might the infection be back again? Returning to the doctors, she was prepared for battle this time. When initial consults and tests didn’t reveal anything Linda insisted on receiving an MRI with contrast immediately.
“They put up a fight, but I was in no mood to deal with incompetence again. I kept insisting, won the battle, and had the test.” As it turned out, Linda was right in forcing them to give her that test. The MRI showed she had a large blood clot in a dangerously inoperable spot deep inside her brain. If Linda had not insisted on the test, she could have died. A second time. She was then told by her doctor to take the blood thinner Coumadin, also known as Warfarin, which is found in rat poison. In other words, she had to take rat poison and maybe die, or do nothing and die for certain. Coumadin can cause deadly brain hemorrhages, so taking the drug was very risky. Faced with a choice between possible life and most certain death Linda chose life.
Linda was eventually taken off of Coumadin but the gamble she’d taken on the medicine had saved her life a second time. She now takes an aspirin a day and prays as the only treatment for the blood clot in her brain. After the dust had settled, she was left emotionally and physically scarred, with several incurable autoimmune disorders and a brain tumor that developed later. She was also battling enormous medical and other expenses. Linda consulted an attorney about the medical wrongdoings that she had experienced. Taking his advice, she filed a complaint with the New York State Medical Misconduct Board. Her primary care physician was twice found not guilty! Due to her unusually complicated and error-ridden case, investigators felt it was too difficult to find one person specifically guilty.
And, that was that. It was over. Or was it? Linda is now permanently disabled, unable to work, financially reeling from her life-changing trauma, and unsure of how she will survive. Yet, here she is, living to tell her tale. As a result of her ordeal, Linda lost all of her financial resources and now lives on the verge of bankruptcy. However, instead of being bitter and full of hatred, she is finding the strength within to keep on keeping on. Music, singing, laughter and the love from her family and friends keeps her going, along with the idea that her story may be able to help prevent others from having something like this happen to them. It has become her mission to let people know that it is time to start taking control of their lives and their healthcare. She herself is living proof of it.
Having paid into the system her whole working life, Linda Fullerton was shocked and angered to find herself denied Social Security Disability benefits after her ordeal. Finally approved after a lengthy battle, she has learned much about the system and has founded the Social Security Disability Coalition as a way to share her knowledge with those in need. You can learn more about Linda here: http://www.frontiernet.net/~lindaf1/bump.html
Thank you Linda, for sharing your Story with us.
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