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I was recently diagnosed with Chiari Malformation I with 6.8 mms tonsils. I can't even begin to explain how it all started because I am still in shock to this day. I have been seeing my primary doctor for 10 + years complaining about stomach pain, back pain, pain in the back of my head, sensitivity to light, pressure in my eyes, weakness, tired all the time, memory problems, the symptoms kept getting bigger and I worked through the pain, and I just sucked it up. I told myself I can get use to it. I was working long hours at the office and would continue to work from home. I had a lot of pressure at work. Actually my entire office was under al it of pressure. My headaches were getting worse and I kept taking Motrin for the pain. On 08/11/16 I was at my office talking to a manager and my co worker brought to my attention that I had slurred speech and my right face was drooping. I continued to push on with work and my symptoms got worse. I got to the point where I could not stand up or speak. I felt as if the air was being cut off. I was taken to the nearest hospital and admitted to the hospital. The ER doctor was treated me for a stroke. My blood pressure was normal, EKG was normal, then he has me do some exercises to see if I could move my head. I was asked to move my head up and then move my head towards my chest when all of a sudden I had a siezure. I was given a anti siezure shot and morphine shot. After that I was taken to the radiology dept.to get a CT with contrast and without contrast. After the CT, the doctor was asking me a series of questions but I had a hard time responding. I knew what I wanted to say but I couldn't. Once the CT results came back, the ER doctor said good news, no sign of a stroke, but there is something questionable that you will need further testing. My husband asked for more specifics and all the doctor said was it was congenital. So I followed up with my primary doctor and she ordered and MRI which confirmed my diagnosis which has been reviewed by a Neurologist and Neurosurgeon. The Neurologist I met with recently took his time with me to go over my MRI. Apparently there is a achranoid cyst and there is increased CSF space over the bilateral frontoparetal lobes
and the Neurologist did confirm I have Chiari Malformation 1. I'm still waiting to see the Neurosurgeon. I don't know how I feel about having surgery. I've been doing a lot of research and most of the results are not good. I am only 39. I am worried about a lot things. My life is not the same. Since the visit to the emergency, I can't bend over without collapsing, I can't drive because I have a stiff neck, my vision sucks, my memory is not the same, I still have slurred speech, I stumble or walk like I am drunk, sometimes I have ringing in my right ear, the back side of the right side of my head aches all the time. I take Topomax for the pain and Imetrex if I'm in too much of pain to bare. I take Valium to help me sleep at night. I keep asking how come this is happening. If I was born with I this condition why did it take so long to diagnose and if I did something to make my symptoms worse then how was I suppose to know that I was not suppose to take on so much stress. I have so many questions. I'm really frustrated and especially finding out that there aren't many doctors and Neurosurgeons that specialize in Chiari in my area. I also want to meantion that it breaks my heart that there is not a huge awareness about this diseases. There needs to be more awareness and we need more doctors to know about this condition. We need our future doctors who want to specialize in diseases of the brain to find a better or more advanced surgery method to fix/correct Chiarai.
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