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.
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Jesse, enjoyed your blog and look forward to reading more. What a battle you’ve had. Many years ago I went through a similar situation w/Esther. She was nine. She had sever pain in her side….usually we missed a day or two of school. Then it would go away as quickly as it came. I started counting the time between the attacks….about 25-28 days. One time during the attack, I felt something hard in her abdomen. I took her directly to the emergency room. By the time we saw the doctor, he could not feel any of the hardness…his diagnosis…”growing pains”. I had five other children, and knew that growing pains did not double a child over. Anyway, months passed and we continued w/the sequence. Finally, one day she had a fever and the pain. So off to the doctors we went. Our first doctor was really puzzled…it was not kidney or appendix. It was closing time, so he sent us to the hospital for a body scan…nothing seem to show up, so the doctor on duty at the hospital ordered an ultra sound…by this time it was almost midnight,, so the tech for the ultrasound had to be called back to the hospital. Yes, they found a growth in her abdomen, uterus area, They sent us upstairs to wait for the obstetrician on duty to finish delivering a baby. He looked at the ultrasound pictures,took her in and did another ultrasound. He was leaving on vacation that day, so he sent us to B’ham to an oncologist…told me not to let anyone in Huntsville cut her open. As we got ready to go home…now well into the a.m. hours, he said the oncologist would call me for an appointment, gave me his private number in case the oncologist hadn’t called in three days. Long story short…Esther was put into Children’s Hospital in B’ham, cut open and tumor removed. Praise the Lord it was not cancerous. But if it had gone much longer, it would have blocked her intestine and we would have had one sick little girl. The first doctor and second doctor both called to find out if we had solved the problem. God was watching over us….all three doctors that we saw during the span of 2:00 p.m- 3:00 a.m. did not want us to go home until we had solved the problem. The fever, just a little touch of the flu that came the same time as the pain. God’s way of getting us back to the doctors. After the removal of the tumor, Esther’s energy level and health improved greatly. Praying for you as you learn to live w/your illness. God bless. Edie
I have read your Chiari stories obefre… but I should go read them again… it is not an easy world! =) as you know we think our son might have a rare case of it… combined with another genetic disorder called EDS. ????? *sigh* I hate that medical world we were in… especially since we can’t find a diagnosis for our little man… I escaped it for a while… one day I need to bravely open the door again… but break has been nice! I finally posted our story this summer… did you see it? I can send you the link! and this comment really could have been an email! mostly saying… my heart is with you on this one girly!
hello my name is Naomi I fell on ice n my back yard feb.19 2011.knocking oneself out ..went 2 haptisol giving a catscan. sent home..following up a couple of days later..my doctor ordered an mri..a few days later my doctor had called me into his office telling me I had chiari malformation type1.I was a deer in the headlites ..omg now what he told me the spelling of it and to go online and read I am going to albany medical center in new york on april 13 to c a nerosurgen
Naomi, I’m sure you must be feeling very overwhelmed and scared. What did the neurosurgeon say? Were you having any symptoms before you fell on the ice?
Thank you for sharing your story Edie! As a parent, I know having a sick child is so frightening. I am so glad God used her fever to get her the medical attention she needed.
Mom, I love your blog, you have such an amazing ministry and Im happy you’ve found a way to share your experience, and give others who are struggling courage, I love you so much, and you have such a good talent in writing!
-Aleah
hi, my name is jon. im 17 and was diagnoesd with criahi about a month and a half ago. i started having symptoms about 2 or 3 months ago. the ONLY symptom i have/experience is that it constantly feels like im in a dream(if that makes since). im goin to vanderbilt in nashville 2mrrow actually to speak to a nuerologist. I have only heard of people with all these really awful symptoms and i havent had any of them yet, i think because we caught it early. could u let me no if u had this symptom
Hi Jon. Yes, I have definitely had the symptom of feeling like I was in a fog and unable to think clearly. It is because chiari causes increased intracranial pressure. I will be praying for your appointment. Please let me know how it goes and if I can help in anyway don’t hesitate to let me know.