Chiari Zero?

[Sanderson23]

I am looking for info on Chiari zero. My daughter(18) has been very ill for over 5 years, basically disabled and cannot attend school for past 2-3 years. She has POTS, autonomic dysfunction, and a MYRIAD of neurological issues the main being severe headache in the back of her head and neck stiffness. She has had vision issues, tingling/numbness in extremities, gagging/swallowing issues, insomnia, and terrible fatigue. She literally LIVES in headaches and cannot function. The worst headache is this base of her head and neck pain. The cardio who treats her autonomic problems did an exam and took a careful history of this new headache type and immediately suspected chiari 1. He has other patients who have been found to have this. The MRI report said no chiari, however, when her doc viewed the images he questioned this and called the radiologist, who again said no chiari. This is all I have to go by at this point but I am highly suspicious that there is something in this area of her head and spinal cord causing some of these symptoms. After researching I found the "chiari zero" info which I know is near impossible to find and get a doctor to treat. Looking for feedback and how to go about at least RULING OUT a chiari zero!?? My daughter is so debilitated and I would HATE to miss something that could really help her to get better. Thank you!!

[selmaS]

  Hi and welcome to the Chiari forum.

Since u have a Dr that is somewhat knowledgeable....try to get them to do more testing to show what the issue is....so many Drs look at the size of the cerebral tonsil herniation and that is not Chiari, only the result of it....and like the description of Chiari 0 it is possible to have the smallest of herniations but much more severe symptoms then someone with a very long one at 13mm's....the issue is more if it is wide or obstructing CSF flow, so a CINE MRI to check flow would be a help...also ask about related conditions like Syringomyelia, tethered cord, disk issues, ICP, sleep apnea, ehlers-danlos....as they all can cause similar symptoms and issues....and can be over looked since the herniation is not where they feel it should be....sigh....

Once u get more testing  get copies of it...reports and images on disk so u can easily go for another opinion....use the list we have posted in the Health Pages to research Drs....not all recognize Chiari 0....and be advised u may have to travel to get to a Dr....http://www.medhelp.org/health_pages/list?cid=186

[Ball123]

The least you should do is getting a second opinion on the MRI. Did it mention anything abnormal at all?

[Ball123]

There is something called a cine MRI that is more like a movie where you can see the cerebrospinal fluid flow than a photo. Chiari is really an obstruction of CSF flow at the base of the skull.

But equally important would be to find a neurologist or neurosurgeon who specializes in chiari.

I suffer myself from chiari like symptoms but with no chiari found. But I have POTS for example and this sometimes causes similar symptoms. It is very hard to say what is caused by what. There are also forms of migraine that mimics chiari. You need to find a really good doc, that is the best advice I can give you.