Frustrated

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I was diagnosed with Chiair in Dec. 2015. I had an MRI because of headaches, dizziness, blurred vision, disorientation, photosensitivity. I also have restless leg syndrome.  The MRI said I had a 7 mm tonsillar herniation. Then I had an MRI of the cervical spine, thoracic spine, consult with a neurosurgeon, balance test, tilt table test, lumbar puncture, eye exam.  Now they are telling me that I don't have 7 mm herniation- more like 4-5 mm. They aren't sure my symptoms are due to Chiari. They don't think I need surgery. They want to load me up with steroids and pamelor. I just want it fixed!! I'd rather have surgery and get it fixed than be stuck on a bunch of mind-numbing drugs forever. I'm getting a referral to a neurosurgeon who specializes in Chiari and we'll see what they think.

After research and comparing MRI photos to normal photos, numerous tests which showed nothing, I just wondered if anyone has a perspective on this. The cerebellum looks crowded in the MRI. Don't know if it is cutting off any CSF or not. If the first MRI shows 7 mm and the 2nd one is 4-5mm, which one is right? How far does it have to extend to be considered for surgery? I'm very frustrated that my doctor doesn't seem to think my symptoms are important or indicative of anything. All the sources connect these symptoms with Chiari. Meanwhile, I can't drive anywhere, I get tired really easily, I can't sleep at night and am tired all day, I feel like I'm drunk when I'm walking. 

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  • Posted

    Hey!

    From my experience & that of many others on here, the size of your herniation is not the issue. My NS told me that it is more the symptoms you experience, the size & shape of your skull & the flow of your CSF fluid that is important.

    some people might have a small herniation & horrid symptoms requiring decompression surgery, yet others may have enormous herniation & very few if any symptoms not requiring the op.

    It is good that you already have your NS refferel in place, many patients have to battle for a long time to get a refferel as so many doctors & neurologists are dismissive of Chiari, so try & be positive if you can.  You may find a list of questions to ask your NS will help to reduce any further frustrations.

    Do you know why the neurologist wants to put you on steroids? What do they suppose us causing your symptoms ?

    hope I have helped a little, all is not lost, lots of support on here. 🙂

     

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    • Posted

      Thanks!!  I think the steroids are to alleviate inflammation that may be causing the headaches. They think the balance problems, dizziness and all is due to "headaches" with no indication of what is causing the headaches. I had cataract surgery on my left eye a year ago because I was having blurred vision. After that, I had worse blurred vision, floaters and had to have another surgery to fix those. Then I had the other eye done a few months later. I've had no improvement in vision at all and now I have photosensitivity.  I had several bike accidents last summer that I assumed were due to my bike, but maybe they were due to the Chiari. I didn't go to the doctor until November because I was tired of the vision, dizziness, headaches, general feeling not good and I told the resident I needed a Brain Scan. Which, surprisingly they ordered. That's when they found the Chiari. But they don't seem to have any clue about the multitude of symptoms I've read online so they've spent the last three months ordering up tests for various disorders that I could have told them were not the problem.  They seem very limited in their opinion of what symptoms constitute Chiari. Hopefully the new neurosurgeon will be better. When I see the neurologist, she does the standard tests- follow my finger with your eyes from right to left, walk down the hall and back, and they don't see anything wrong with me even though I feel as if I'm drunk when walking. It is very frustrating!! 
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  • Posted

    Dear Linleel,

    I can relate to your frustration and to the rest of the other chiarians posting their sharing their symptoms. 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 uneasily just sucked it up and said I can get use to it and it's all I. My head and it will all go away. Until, 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 it of research h and it most of the results are not good. I am o my 39. I am worried about a lot things. My life is not the same. Since the visit in the emergency, I can't bend over without collapsing, I can't drive be cause 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 pain that I can't bare it. 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 lo g 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. 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. It's often misdiagnosed or dismissed.

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    • Posted

      I got referred for a Cine MRI in May and the results showed a complete blockage of the right tonsil, which extended 8cm. I had surgery June 2. All symptoms gone thereafter. Riding bike, walking fast, all good. Then 3 weeks ago started getting dizzy and balance issues again. So now trying to get another Cine MRI to see if CSF is blocked again- could be due to scar tissue. Argh!!!
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    • Posted

      I'm sorry that you are having promblems again. I keep thinking about wether I should even consider having surgery. I have done so much research already and it seems like the medicine and technology is not advanced for this disease. I had a hard time accepting when I was told I was born with this disease and I was told that I should have had surgery when I was a child to correct the problem. Well I was fine as a child! Until I had a lot of stress at work and I thought I was having a stroke but instead it's something that there is no cure. I wish this never happened to me or to you or to anyone! I wish that I didn't look lop sided. I really do look like that. People will ask me if I am okay and I just tell them that I have a stiff neck. The past two days, I now have tingling sensation in all my fingers. I never had that before. How can I describe the feeling... as if I hit my funny bone except the feeling is on all my fingers. It lasts for 15 to 20 minutes at a time. Depends what I am doing. And it's hard to get ready in the mornings, to brush my teeth, to brush my hair, and I can't even shave my arm pits and legs because it hurts to look down. I am terrified. I don't know if my condition is getting worse. I thought I would be able to return to my normal activities by now but I realize that this is not going away soon. Can someone tell me please, can this just be a flare up and then subside and come back? Like IBS?

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  • Posted

    This inconsistency is frustrating. I have a previous MRI 4 years ago and 8 years ago both of which was reported to be normal. I'm in the UK so we don't actually usually get copies of our scans and stuff and most of the time the doctor who orders them also don't see them (another doctor looks at the scans and interprets them and send the report to the doctor who asked for the scans). Both my previous scans were labeled as Normal so no one took me seriously for another 4 years because of that. As a chiari is congenital it was obviously always there. My last scan 4 months ago showed it was 8 mm. It was at a different hospital. Sometimes some people are just incompetent and don't so their job right!

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