Hi and welcome to the Chiari forum.
U may want to share ur experiences on a new thread as this is old.....
Ur next step is to get more testing and find a chiari specialist.
I am happy to welcome u, but so sorry for the reasons u come to join us.
Hello everyone, I have been reading your comments and i myself have been diagnosed with the same thing. I had an MRI on Monday and it shows I have a herniation of 8 to 9 mm below the foramen magnum.
Cerebellar Ectopia is a term used for "Chiari 0" and for the same symptoms of True Chiari, but caused by something else - like an accident or something that causes the squeezing.
My MRI says basically the same thing. "There is mild cerbellar tonsillar extension below the foramen magnum consistent with mild cerebellar ectopia probably not a true chiari 1 malformation". It notes it's a 5mm herniation and the tonsils have a "relatively normal rounded appearance"
I don't get migraines. I've had one giant run on headache that never stops. My ears ring off and on for hours a day. My jaw also hurts, and behind my ears.
My balance is so off. I'm dizzy daily also. I haven't worked since 98' when I got hit by a car and this all started. (I just found out about this two weeks ago).
I see a neurologist on Wed. I live in Philadelphia and from exp. this isn't the best place for doctors that's for sure.
Sleepypea, I am happy to be of any help. It is nice to share things and help each other. Some days I doubt everything and tend to think it will all be over in the morning, even after so many years of struggle... It is good to meet people that understand and to reassure myself that I am not just going nuts :)
Thank you ploink for all the information.
All this is still so new to me. I can say after reading up on this the past couple weeks I have realized that this is definitely what is causing my symptoms. It all makes so much sense now. I really was at my wits end, but now I have hope. I just pray that I can find a neurosurgeon who is educated on this and able to help. I don't know how much longer I can stand living with this. It gets worse and worse everyday it seems. I haven't found any Meds that really help much especially with the nausea. As soon as I sit down at the computer and start to read or type I start becoming nauseous. Driving is pretty bad too. I thought I was just car sick all the time, but now I'm finding out it very well could be another symptom of this condition. Seems like I feel really good in the morning when I get up but as the day progresses I become sicker and sicker until I'm forced to go lay down.
Well, Again Thanks so much :)
Oh the jaw pain is all too familiar! I tend to push my jaw forward an keep a lot of muscles in that area tense, because it somehow helps to keep my airway open.
And the asthma you mention in your profile.. is that real or misdiagnosed because its your vocal cords that make the wheezing sound?
I am new to this website too and I recognize a lot of stories, very exciting and interesting!
Wish you good luck!
Wikipedia says:
"Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation." http://en.wikipedia.org/wiki/Brain_herniation
I have only 3mm herniation and also not peg shaped. The tonsils are wrapping around the brainstem and pushing down into and sealing the foramen magnum and somehow restricting blood flow.
I do not even have headaches, but I do have symptoms like ringing/pressure in ears, a very disabling dizziness/lightheadedness and a nasty laryngeal dystonia that required tracheotomy.
Very little is known about cases like ours. I have even been to the Chiari Institute in New York and they DID call it chiari, though they were not sure it caused the dystonia. (but now I am pretty sure it does).
Basically what they say is, if you do have some herniation and you have some of the symptoms, then you do have a chiari. They did not even measure the length of the herniation! They say that does not mean anything.