Help me please!

I have had issues with headaches and miscellaneous things for quite a few years now. They have always passed it off as something else, usually tense muscles or something. Well, the last month or so has been absolute hell. I have 24/7 headaches that no treatment has helped (even steroid shots at the base of my skull), I’m dizzy most of the time and feel like the world is shaking, random parts of my body go numb or I have muscle tremors, my neck and back ache all of the time, and I have random moments of strange vision. They originally thought that I has MS, but after a brain scan they found no lesions, however, they did find a cerebellar tonsillar herniation of 2mm. They have ran every blood test out there, all come back normal, going to the chiropractor only made it worse, and no medication has helped. However, any time I ask if the herniation could be causing my symptoms, I am always shut down immediately and told that it is not possible at that size. I’m wondering what you guys here think? Anything I should pursue farther to help get some answers? I do have an EMG scheduled for the end of the month.

Hi HollyyyNicole , I’m Kelly welcome to the chiari support group. I just want to say it is very terrifying to have all these symptoms and no real answers. I know because I’ve had almost every symptom you have described and more. From what I have learned from other members of the support group is that it is not the size of the herniation, but whether or not you have sufficient flow of your cerebral spinal fluid.
There is an mri called a cine mri that would show if your spinal fluid is being blocked off. You will probably need to find a neurosurgeon the specializes in chiari. There is a doctors list under the tab info for members. I’m really sorry that you are having such a terrible time. Hang in there!

Kelly :slight_smile:

Everyone who says the herniation is too small to cause any symptoms, doesn't know what they are talking about. The smaller herniations will be symptomatic less frequently, but generally, when you're talkning about Chiari, you don't measure the sevirity of it by mm. With symptoms this severe and no explanation for them you need to see a Chiari specialist. They will know better. Noone yet understands how Chiari works. That is why it's so important for you to find a specialist. Many doctors go by the 5mm rule, which, realistically looked at, is a guide at best. You can check out this link . It's a lecture about what we don't know about Chiari, and I think you will get a good look at what a doctor fimiliar with it, would consider, before dismissing you or before moving on to surgery. You don't have to watch the whole video. at around 1 hour into the video they start Q&A, and at the beginig there is around 10 min intro.

If you have any other questions, or you need support, I'm sure our members will help you.

Hope you find a good doctor soon. :)

Best wishes, Kristine

Thank you guys so much for making me feel like I’m not completely crazy. The problem I’m running into now is that there is only 1 main chiari neurosurgeon in my state, and the only way to get an appt is to have a doctor’s writte order that your condition can be helped by surgery. However, when doctors shut me down every time I bring it up getting that is hard ): I have my own referral into the Mayo Clinic that I will hopefully know if they will accept me or not. I’m also working on getting an MRI of my cervical spine to be able to get into a chiari clinic in a neighboring state, but again, convincing the doctors to put in the orders in is hard.

I just don’t understand why someone who is 21 years old and has had their body hijacked from them isn’t concerning enough to want to look at all possibilities, but that’s just me I guess.

you can look also for other doctors, like neurologists of even family doctors who have been recommended by other chiarians. If you hit a brick wall with everything, try contacting Before that read this and check out the links they have provided for doctors who have experience with Chiari. You can print out the CM and SM Handbook and ask your family doctor to read it, or at least a part of it. Or make them at least read a Chiari fact sheet from or

Don't give up and you will find a good doctor who will figure out what causes your symptoms and how to treat it! :)