My mother has always been a loving woman. There is not a mean drop in her four feet, eleven inches of a body. She began getting unexplainable headaches and underwent rigorous testing with no specific results. She was under the age of 50, when her symptoms started. Her doctor suggested these symptoms were nothing more than part of a mental disorder; suggesting that my mother was using headaches for attention. About two weeks later, we rushed my mother to the emergency room where a new doctor examined her. She needed to have a spinal tap also know as a lumbar puncture (LP) to determine if her headaches where due to too much liquid in the brain. Finally, something that could explain the headaches. After months of tests, what was one more? So we agreed. I had never heard of a lumbar puncture nor did I realize the nightmare that was about to begin. The doctor proofed to be right. My mother had too much liquid in her brain which caused her to have severe headaches and vomiting. Her pressure was above normal, the poor lady had to endure two other lumbar punctures before she left the hospital. Each LP got her closer to the normal amount of fluids but a needle in your spine is no picnic. It was my first year at the University for my Bachelor’s degree in Management. Meanwhile, I had to take a crash course in a neurological problem. I spent my days studying for class and my nights researching my mother’s condition. Trust me, washing your mother suffer through a lumber puncture is no easy tasks and I wanted to know as much as I could about what she was going through. She did not complain, she was a true fighter.
Recovery periods included four hours of no movement for her. My mother felt so much better after her first lumbar procedure. The pain from the needle almost seemed worth it. After her first round of LP’s, the doctors explained that she may not need to go through this procedure again, that they would try to medicate her and see if modern medicine could balanced the liquid in her head. At the time, I could not even see blood and I had a genuine trust in doctors which was instill in me as a child. We left the hospital after a few days… with a new profound gratitude for those doctors. For the first time in months we had a clue of what was wrong. It was not a mental disorder but a pressure problem. After exactly three months. We were back in the emergency room. The headaches had returned with a vengeance; the nausea and the vomiting were part of the package. Here I was explaining to new doctors what was wrong with my mother. My mother with a condition that I knew very little about and at the time could not even pronounce. As she laid there crying and screaming, the feeling of helpless grew inside me. This disease took over her life. She could not walk, a walker was required; she had lost part of her vision, she could not do day to day tasks and at times she would loose grasp of reality. To me this was not something I understood. Cancer, diabetes, leukemia, liver failure, etc. those where conditions I had heard about; however, Neuro Pseudo Celebri Tumor, not in my vocabulary at all.
By the time I graduated college, my mother had under gone over nine lumbar punctures. One or two every three months like clockwork. When we visited the emergency, I could tell the doctors what her condition was and at times I had to explain to the new kids on the block (scary, I knew more at times than the doctor on call). My goal was to get her back home feeling better. Several times, the neurologist offered to have a surgeon review her files and place a shunt that would travel the liquid from her head to her abdomen. I thought he was crazy. No offense, but it did not matter how he sugar coded that, it was still brain surgery in my book. But she was in too much pain and her small body could not take it any more. My mother aged 10 years in a matter of months. She has always been there for me and to know that all I could do was hold her hand, broke my heart. My family looks at me for answers and surgery was the only other option. Needles to the spine are painful and regardless how many times I was told she could have a hundred of these with no problem, I knew better. I could see the toll this was taking on her body. So, I faced reality. I sat down at home and did some more homework. What is a shunt? The word it self, sounded simple. But it was anything but a simple matter; choosing between the different shunts, the options, and then the doctor’s opinions. I tried reading medical journals that were in a different language. All I knew was that a whole had to be drilled in head. It was a scary concept that I preferred not to deal with. But my mother’s quality of life depended on it. I spoke to anyone that would listen and in the hospital I knew pretty much all the nurses and I asked their opinion. It was a difficult decision that I had to approach my family with. Prepared with the little I knew, I approached what I would consider not an easy audience. But after much debate we all concluded this was the next step.
The surgery was scheduled out of town. We travel several times to meet with neuro-surgeons. I expected them to be self absorbed but they treated my mother as if she were their own. She finally felt at peace with the idea that she would be going through surgery. I was glad one of us was ok with it. The day of the surgery it was my job to tell everyone that it would be alright. I thought if I repeated enough times maybe I would believe it too. My mother, my friend, my hero may not be coming back. This was a reality that I was not willing to accept. My mother took each procedure as a trooper. She was the toughest person I knew. She called me her rock. But at that moment the ground shook under me and this rock was breaking apart. Hours later the surgeon came into the waiting room to state that she made it through surgery with a few complications but she would make it through. Unfortunately, they had to shave her head. To be honest, I cared very little about her hair. I just wanted to know she was going to live to see me get married, have children, and spend my adult life around her. But to be honest, the shock of seeing her fragile bold body being carried in to her room was more than I was prepared to cope with that day. I lost all emotional control. I hid my self in the bathroom so no one could see me, turn on the dryer so they couldn’t hear me either. I never felt so helpless before. My brother had to carry her to her wheel chair. I will not lie; this was the hardest moment in my life. I felt as if my opinion could cost her, her life. I know am not the only person that has had to overcome medical nightmares but I can say that my mother survived because of her courage. Some people are born with courage, others arise to the challenge. Life gave her many challenges but she took them on one at time.
Two years have past since she had her surgery. I am glad to announce that she has not had another lumbar puncture. I am thankful to all her doctors for their time, support, and guidance. I liked some doctors more than others but they all had the best intentions at heart. Plus I learned to be picky when it came to her care. For those of you who are enduring the painful process of seeing someone we care go through a hard time, my thoughts and prayers are with you. Review all the medical websites. Treat the doctors as your life lines. Don’t just take their word on it. Ask them where can you research it. Looking back, I can say I am a stronger person and so is my mother. We had never been closer and now we are inseparable. For those of you that have not experience this kind of pain. Love unconditionally. You never know if you will have to take this responsibility on or if you will be the one needing some help. I share my story becuase I felt alone going through this. We have one regret. Our fear for surgery cost my mother months of pain. The shunt gave her, her life back. She may never be her old self again but this surgery gave her hope to the future and so far it gave her a life with out LP’s. A spinal tap is as she discribed it worst than giving birth. If your love one is suffering don’t let fear control your medical decisions. Be open minded and give each option a fair review.
