I have what!!!!!!
When I became sick in November 2007 and began to experience daily bouts of dizziness, blurry vision, extreme head pressure, feeling like I was going to pass out, and balance issues I didn’t know what could be wrong. My first thought was to find a doctor quickly, but finding the right doctor would prove to be an unforeseen challenge. I had one doctor tell me that stress was causing all the symptoms I was struggling with. When I asked if he might be willing to order an MRI just to be sure, he told me, “No. You are the reason that healthcare costs continue to skyrocket.” I may not have attended medical school, but I have never met anyone where stress caused them to walk into buildings and yet that is what this doctor was diagnosing me with. I left feeling dejected and alone. If I couldn’t even get a doctor to believe me how was I ever going to get help? I went from doctor to doctor and from test to test only to get nowhere. I spent many nights crying in my bed wondering if they would find out what was wrong before it ended up killing me.
As I continued to deteriorate, my husband convinced me to go the doctor one more time. I ended up scheduling an appointment with my family doctor and as my doctor walked in the room looking at my chart I said with tears pooling in my eyes, “Doctor please help me!” He must have noticed the complete look of desperation on my face and really listened as I began to tell him all the bizarre symptoms I had been experiencing, which in addition to those already listed now included insomnia, tingling in my hands and feet, continual nausea, and ringing of the ears. He immediately ordered an MRI and within 24 hours I would finally know what had been causing me to suffer over the past six months. I had a chiari malformation. What!!!
I had to search chiari malformation on the internet as I had never heard that term before. It sounded like something horrific. As I began to do my research and learned that a chiari malformation is when part of your cerebellum herniates out of the skull obstructing the flow of spinal fluid to the rest of your body. I was so relieved that I finally had an answer to what had been affecting me all these months. Of course I was also very anxious and in doing my research I discovered brain surgery is sometimes required to alleviate the progression of the symptoms. My doctor referred me to a neurosurgeon which turned out to be the biggest waste of my time. This particular neurosurgeon, who by the way had never had a chiari patient, told me that surgery was not needed because my herniation was not severe and that I would just have to learn to live with the symptoms. I sobbed in the parking lot. Here I thought I would finally get the help I needed only to be turned away…again!
My dad, who had been researching chiari ever since my diagnosis, came across the Chiari Institute located in Long Island, NY. Apparently, the fact that I had been turned away by a local doctor was common as most doctors unfamiliar with chiari base the severity on the degree of herniation rather than the neurological symptoms a patient is experiencing. In fact over half the patients at the Chiari Institute are patients needing corrective surgery from a botched decompression surgery or patients like me who can’t find anyone qualified to help in their area. I flew to New York and would undergo fossa decompression surgery in January 2009.
If you have been diagnosed recently with a disease or chronic illness don’t assume that it is your doctor’s job to get you the best medical care possible. Even the best intentioned doctors can make mistakes or send you in the wrong direction. I am always amazed when I meet people in various waiting rooms that not only don’t know why they are there, but don’t know anything about their healthcare. I can’t stress enough how important it is to do your OWN research. Learn what questions to ask, what treatment options are available, and what you can expect to experience with this disease. Join support groups and talk to other patients as no one will be able to sympathize more or understand better than someone dealing with the same condition. If I had not done my research, I might be in a wheelchair now struggling to make it through each day. While, I still have some permanent neurological damage, I no longer experience daily headaches and my symptoms are not getting progressively worse.
I know how scary it can be when you are first diagnosed and how overwhelmed you can feel, but chose to become proactive. No one is going to care more about your health than you. Please feel free to post any questions I might be able to help you with.
What about you? Have any of you had to go through something similar?
Next Tuesday, I will be discussing dealing with the changes a chronic illness has on your life.