just found out that i have chiari

[bambino2678]

Hi my name is jimmie i just found out that i have chiari mine is between an 8 and 9 or thats what my dr said i dont know where to start or what to do tired of the headaches the passing out loosing control of my body and smacking my head i live in iowa and i need a good dr depression ***** life is falling apart

[selmaS]

  Hi and welcome to the Chiari forum.

We do have a list of Drs...but may not have one on there close to you so, you may have to travel like many of us do....it is well worth it to see a true Chiari specialist and have things done the right way the first time.....rule out ALL related conditions so like the above poster mentioned you will want a MRI of your complete spine, cervical, thoracic and lumbar this will help rule out a syrinx (Syringomyelia), disk issues, tethered cord, and then other testing for issues like ICP, POTS, sleep apnea, ehlers-danlos, CCI.......these are all important to know b4 surgery as they can affect the recovery process....
Here is a link to the Beighton testing....http://www.ctcranio.com/ehlers-danlos-syndrome-1/

we also have a pic in the EDS group here on MedHelp as well as informative video links......

AS far as the size herniation that is not as important as if you have a CSF obstruction and the best way to know is a CINE MRI of the brain and cervical spine.....Many Drs look to the length of the herniation to classify it as Chiari...when Chiari is not the herniation, but a malformation of the skull....so, right off if they do that you know the Dr is not well informed or experienced with Chiari....


I know this can be overwhelming.....but it is important to know what all is going on as so many of these related conditions can also create the same symptoms so you need to know what condition is causing what....and that will help decide if surgery is a viable option.

Keeping in mind surgery is not a cure, but only a means to restore CSF flow and slow progression of a syrinx is present or one from forming when there is an obstruction.
Some symptoms can go away with surgery, but not all may....

Feel free to ask as many questions as you need to, and know you are not alone <3

[baccalynnwv]

Hi Jimmy,

I'm sorry. It is good to connect with others who are in your shoes though. This is a hard road and hard to find doctors who are educated enough help you find treatment.

Check out the doctor list floating around this forum somewhere for a specialist close to you. You really don't want to waste your time seeing doctors who do not actively and regularly treat for Chiari.

Do as much research as possible now. When you arm yourself with CURRENT information about Chiari, you will know whether the doctor you are seeing is throwing any red flags at you that tell you they are not versed in Chiari.

Check out csfinfo.org for a ton of information and videos to help you understand what is going on. The videos are typically medical professionals dedicated to Chiari, giving presentations to other medical professionals.

Have you had the following - if not - you should request it from your physician:

FULL SPINE MRI to check for syrinx. They can happen in any part of the spine.
CINE MRI to check CSF flow.
screened for connective tissue disorders such as Ehlers Danlos. Look that up on Google and also look up beighton criteria.

Most neurologists, general physicians, and local neurosurgeons do not have current diagnostic criteria for Chiari. Neurologists are usually the first to dismiss your symptoms.

Hang in there! We are here for you.