Not sure what's going on.. Can I have chiari even if it doesn't show on MRI?

Question

I've been having severe headaches & neck pain since around August 2013, my primary doctor gave me medication that only made my headaches worse. I had to go to the er because I was in a lot of pain, I had a stiff neck my headache was bad & I was falling a lot. So my primary finally sent me to a neurologist. She right away told me she thought it was chiari malformation. She ordered mri's & they came back normal. She says all my symptoms point to it but my mri's are normal?? I really am helpless right now, nothing helps with pain & I don't see my nuerologist until April. Is there a way I have chiari even if it didn't show on the mri's ? Help..

Okloak · Answer

I'll have my mom call the place where I had my mri's done. Thank you.

selmaS · Answer

Don't ask ur Dr for copies as they will charge u....go to the facility that did the studies and request a copy there, they will give u both the MRI on disk and a copy of the report...and always request copies when u go in for ALL testing....even blood panels.....

ivykat · Answer

Before I was diagnosed with Chiari, I was told it could also be pseudotumor cerebri due to my symptoms, which sound similar to yours. There are lots of things that could be causing your headaches. Keep at your doctor until you have answers. You know your body best.

Okloak · Answer

We don't have the mri's I'll have my mom ask for them when she talks to my nuerologist in a week. (She's been gone & should be in her office in a week) does coughing & sneezing make your head hurt??

selmaS · Answer

Not sure what age has to do with it, my DD's friend was DX'd with lupus at age 12....

 MS can have indications on a MRI, usually white lesions....but that does not mean MS, just can indicate it as a possibility, it can also indicate the patient also has bad HA's.....a LP is done once lesions are seen to see if there are more markers for MS and demylation .

 Do u or ur parents have ur MRI on disk and the report?

Okloak · Answer

I am 15, that is why my nuero believes I cannot have lupus. Ms would have showed on my MRI right? I have absolutely no idea what is wrong with me & my symptoms have been getting the best of me. I cannot deal with them anymore..

selmaS · Answer

Most that  have been on here have had those tests bcuz most Drs do not feel Chiari will cause symptoms and they are conditions with similar symptoms, once ruled out one will hope they will look at Chiari,,,,,some will, some will keep looking or give up and say it is all in ur head...which it is just not how they imply.

 This is y finding a true Chiari Dr is key

Okloak · Answer

I was not tested for Lyme disease & my nuero said there was not a possibility I had lupus or MS! They have no idea now.

selmaS · Answer

Most Drs will rule out Lymes, Lupus, and MS as other conditions with similar symptoms....if not we ALL should be.

JewelsB · Answer

Have you been tested for Lyme disease?

soccero · Answer

DX= diagnosis

Okloak · Answer

I have no idea what DX is ...

selmaS · Answer

Hi and welcome to the Chiari forum.

 It is possible the Dr and radiologist do not recognize Chiari unless u have a certain length herniation, which is not Chiari, but many use it as a means of DX. Many will say u have a "normal" MRI when in fact it is not.

 That said, u need to get copies of ALL ur testing MRI's on disk and the reports....so u can get other opinions.....

 A CINE MRI and other MRI's should be done to see if u have ne related conditions which can also cause some of the same symptoms as Chiari.

 Find a true Chiari specialist...see the Health Pages for a list of Drs to use to research.....