Chiari Malformation Community
Chiari????
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Chiari????

Ive been suffering from upper backproblems on and off for about 6-7 years, the past 3 years have been pure hell. After seeing a pain management doc for almost  ayear i was finally diagnosed with fibromyalgia. I just had an mri done of my brain due to horrific migrains (that ive been suffering from for 10years) that are slowly getting worse. They are mostly in the back if my head, sends shooting pains down my neck and spine, I also have a hard time holding me head up at all when this happens. So I went and had the mri done, and I posted  apic on instagram bc I really was facinated over how good my brain looked!! (Or so i thought) one of my IG friends asked me if she could share my pic with another member and said she had some consernes. She then told me it looked likei have a small herniation on my cerebellum. After i die alot of research on my own, looked at mri scans of normal brains and also of chiari brains, i came to the conclusion that I have chiari. I have most symtoms (symptoms), although i dont have severe headaches, only once in a wjile, and when i do theyre ALWAYS in the back of my head and theres alot of pressure with the headaches. Anyway, my doc called and said that my mri was normal, and now im so lost, i know i have to get a second opinion, but is there anyway I can post the scans here and get anybody with personal experience input??? I undertsnad that my doc should know these things but as far as im concerned (after years of searching for an answer and being blown of by countless docs) Im my own doctor. I appreciate all comments!!!
Tags: chiari fibromyalgia
3 Comments Post a Comment
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620923_tn?1393294254

  Hi and welcome to the Chiari forum,

Chiari is relatively new Dx in that b4 MRI's were around they could only find them during an autopsy .....and when MRI's were first used it was to detect cancers....so, not knowing what Chiari is or not being taught more then 5 mins of info during med school we will encounter many Drs that feel some herniation is normal....

However, it is the true Chiari specialist that does research on Chiari and ALL related conditions and issues that really knows what to look for and how to treat.

Many of us r misDX'd with fibro...many have ehlers-danlos as the tender points r similar...mostly in joints...with many other issues depending on the type u have.

Do post ur pic here for members to take a look at ur MRI....

U may want to send copies of ur MRI to a Chiari specialist and see what they suggest. But more testing is in ur future,..and depending on how long ago ur MRI was, u may need another one done.
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I just had it done last week, so very recent! I was told i might need a standing mri though? What would that be able to tell that a laying one doesnt?
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620923_tn?1393294254

  The idea behind teh upright MRI is gravity may be pulling the tonsils down further then what shows on a traditional MRI where u r lying down, and this may cause more of an obstruction when upright which we spend most of our day upright,...

Good that it is a recent one, but know the medical professionals tend to move forward slowly so until all is said and done u may redo that MRI again at some point.
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