All my life I have had the typical chiari symptoms, but just wrote it off as everyone having the same thing, as I learned, not so.

After my fall that I had, it manifested my chiari and my symptoms became so unbearable painful that they began testing for lots of things. I went from two Ear, Nose and Throat Specialist, Balance Centers, etc., and finally my EN&T Specialist, who by the way was a doctor who knew I was in much pain, and knew from the testing that something was wrong. He referred me to a Neurologist for a MRI looking for a tumor.

I went through 2 years with suffering the affects of Chiari not knowing what it was before being properly diagnosed. I was diagnosed with Meniere's disease and have hearing loss in both ears. Meniere's disease has a lot of the same symptoms as Chiari. Doctors say they have not ruled it out yet.

I was wondering, how many of you, have gone years with misdiagnoses too. I know that Chiari symptoms mast a lot of other diseases. It is very hard to diagnose. MRI is the real tool for detection along with CINE MRI. It can take anywhere from 3 to 5 years to get the proper diagnoses, so I consider myself to be blessed it didn't take that long.

Mainly I went through the migraine deal. They thought it was just migraines. I was given different types of migraine medicines until they finally ordered an MRI.

My older sister always had terrible migraines. I did when I was little, bad headaches etc. It just got to the point where the pain was making me vomit every single morning. I woke up with the bad pain, and sometimes couldn't turn my head at all or move my neck.

No one else in my family have been checked for it. I have 3 sisters and my mom all of them get migraines..Karen is the only one who ever had them bad when she was in high school. I don't know if she ever had an MRI or not. She was in the hospital for a while because of the pain. So they may have (I was little then so I don't remember) Most of the women in my family suffer from migraines so it is hard to tell.

Abby said:


I too was diagnosed with Migraines, my oldest daughter (28) has a lot of them too. I worry that I may have passed Chiari on to her. My youngest (25) does not seem to be bothered too much. I encourage my oldest to get a MRI, but as you know, at 28 she will when she gets ready. Has your sister had an MRI, or does she have Chiari? When we are diagnosed, it would not be a bad idea to have female members get a MRI.

Yeah I’ve actually looked up that study before for my blog. I don’t think my sisters take it as seriously as they did when I was going through the surgery phase…so I don’t think they would get one just to find out unless they were experiencing problems that needed checked out. I think Elizabeth may have gotten an MRI of her head for some eye problem, but I’m not 100% sure/and if they did what part they scanned. Now from my standpoint, they don’t seem to show any symptoms that I had/have other than regular headaches and migraines but they don’t get the chiari pain. Then again who knows.

Abby said:

Would they consider a MRI? As you read earlier, we have a family with Chiari, Duke has a genetic studies going on now for 2 in a family with Chiari. It might help with the cost, never hurts to find out. I listed it on one of my discussions where to locate the lady at Duke. (I think you have to have been diagnosed with it, before they will accept you). Don't know that for sure, but, you can check it out.

Still think you need that helmet.

it took 4 1/2 years! and that was through the assistance of the canadian military, and what dr.s they decide to send you to. First my other half was said to have cervical disc disease then, finally years later was Also diagnosed with chiari, he then continued to wait 1 year for surgery! With symptoms that had him laying in bed all day, everyday, in Extreme pain.

Sorry to hear about all of the delays, and misdiagnosis everyone seems to have to go through when being diagnosed with chiari

Wishing you all well

Great topic:

I too had problems getting a correct Dx..In the doctors defense I guess I am a 'complicated case' as my NS tells me....See, I also had Lyme Disease at the time I was trying to get help for this. Lyme can cause many overlapping Sx's..Finally after the Lyme was Tx'd and the migraine theory was off the table..Migraines do not cause balance issues such as drop foot and rapid heartbeat...ect.....then my primary sent me to the NS..he 1st wanted to address the bad disk in my neck, wait 6 mths and see if my Sx's were better...after the fusion and waiting over 6 mths we decided it was time to go ahead with the decompression.

Still haven't figured out what is causing these disks to go...Just had another fusion last april..and just yesterday had MRI for C-Spine..due to severe pain and neuro issuses...

Hope you are all well.