Just curious if anyone has any input for me? I went in for a CT scan back in 2012 because I was having some neurological symptoms, a burning and stinging sensation in the back of my head and neck and burning and stinging down my spine, vertigo. The CT showed low lying tonsil…So I was called back for an MRI… The MRI showed the same low lying tonsils (7mm) "mild thoracic curve, mild disc bulging on upper and lower parts of spine… So the Dr diagnosed me with “mild chiari” but as my symptoms continued I went in for anther MRI and it said things are unchanged! I am so frustrated as I try figure what is wrong with! I had one dr at one of my appts say that “you do not have chiari” just because I have low lying tonsils does not mean I have it? Is this true? I am suppose to going in to be checked for some kind of leak… I swear I feel draining down the base of my neck and if I am laying down at night I have to have my head positioned in a certain way…what is considered chiari? The radiologist who did my MRI both times has just said they are low lying tonsils?? I feel like I could go on and on with all the things I feel “wrong” but I sound like a hypochondriac… I hate even telling my dr for fear she won’t believe me… I have seen 2 different neurologist and one surgeon… One neuro wanted to do cortisone shots in my spine? I declined and the surgeon said it wasn’t severe enough for surgery! How long do I let the symptoms go on? Not sure where to go from here?? Any advice?
I'm so sorry you are going through this! Most of us have dealt with the same issues of not having doctors know enough about Chiari so they tell you that you're "non surgical". My advice to you is do not give up!! I had a Neurologist tell me I didn't have Chiari when my MRI clearly stated that I did. I believe he told me that because I said it first before he did. It's messed up! You have to be your own advocate. I went online and started researching Chiari docs and found Dr Oro in Colorado and sent my films to him. They called me to make an appt and I flew from Washington State to CO because I knew something was not right with me. Long story short, he told me my CSF was blocked posterior and partially blocked on the other. Three weeks later I was back in CO having surgery. When he got in there, he said my tonsils were very thick and that is something they can't see on films. Am I cured? No. The surgery helped restore my CSF but I have a lot of issues still because of damage that was done over so many years. I hope you find the help you need sooner then later!
I had the same experience trying to find a dr who knew anything about Chiari. After many doctors I finally found a site for neurologist and found a specialist who knew all there was to know and more. And do not let them tell you there is a mild form of chiari! It does not matter how larg the herniation, it matters how blocked the spinal fluid is. I had a 7mm herniation, with 80% blockage of spinal fluid. They need to do a mri with a cine study, that will tell them if there is a blockage or not. The site for neurologist is ANA American Neurological Association. Good luck, and do not let the drs make you feel like nothing is wrong when we know different.
I have had symptoms since 2001. I was told i had a chiari but that my symptoms were caused by menieres disease of my inner ear. Do not let them discouage you. You know how your body feels. It can be hard to communicate to a doc. I had my decompression in 2012. I felt less pressure also had a corpectomy with fusion c5 to c7. Take care of yourself and do not let them think your crazy. You are not alone. I am having another decompression in July. My brain has slumped a whole centimeter, take care of your body. I did not know it could do that.
I lifyed a fily member in need and cause damage to myself.
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You guys are so awesome! Thanks for responding! I feel better even hearing you guys understand!
was your symptoms Sugar from the blockage? headache? Cuz I find myself getting so so light headed and full of pressure when I laugh or bend over…but not necessarily a horrible headache?? I do have headaches and a pressure but I have more of this feeling like I have fluid in my head? Or draining feeling?? Have you guys ever had that?? I have lots of numbness also but the dizzy and lightheaded stuff is very often! And as I’m sure you know so many other things that just don’t feel right!!! Grr!! But thanks so much again for your help!!
Mothergoose yes all of my symptoms were from the blockage. Had surgery too restore the flow
and was symptom free for a good year. And now I get horrible headaches and minor symptoms that come and go.
all of your symptoms are simular to mine. Dizzy blurred vision nausea and vomiting hoarse voice tingling in arm and hands pressure headaches with extreme pain behind 1 eye. Horrible neck and shoulder pain, I could go on. All in our life as a chiari patient.
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You guys are so awesome! Thanks for responding! I feel better even hearing you guys understand!:) was your symptoms Sugar from the blockage? headache? Cuz I find myself getting so so light headed and full of pressure when I laugh or bend over..but not necessarily a horrible headache?? I do have headaches and a pressure but I have more of this feeling like I have fluid in my head? Or draining feeling?? Have you guys ever had that?? I have lots of numbness also but the dizzy and lightheaded stuff is very often! And as I'm sure you know so many other things that just don't feel right!!! Grr!! But thanks so much again for your help!!