I don't have any idea on MRI readings. I just want to welcome you to this forum and to say I feel your flustration. I went 3 yrs and to 3 different NS before finding the one with the answer's. Have you seen a Chairi specialist? I would suggest this. As for the symptoms I had surgery and my DD is now 33 and she is showing the signs of Chairi also and she had a CT scan that came back normal also and the Dr's are saying it is hormonal. Which I don't agree with. I suggest seeking a different Dr, and keep being persistant. You know your body and you know something isn't right. I wish you the best. We are here for you. We have all went through the circle of Chairi run around.
Hi and welcome to the Chiari forum.
It does look like u r tight up in there and u do have a herniation...the problem is what they do and do not teach about this in med school....and u r being treated by those that had even less info given as MRI's were not common place for dx.
Too many look to the herniation as criteria for chiari, when it is the malformation of the skull the herniation is the result of the smaller space.They also look for a herniation of 5mm or larger to classify it as chiari...again, this is further from being correct, u can have a 2mm herniation and have more issues and blockage then someone with a 13mm herniation, the width is more of the issue then the length.
U will want more testing to see if u have a CSF obstruction, if u have ne other chiari related conditions and u want to find a NS that does his own research on chiari and treats nothing but chiari and chiari related issues...
We do have a list of the members Drs for u to use to do ur research of Drs...the list is not meant as a referral and not all Drs on the list may be true chiari specialists....
Until u find a dr that is a specialist in this area u will get those that do not feel u have this, as it is commonly ignored as an incidental finding.
Keep pushing for answers, educate urself on everything chiari so u know what questions ur dr should be asking and what testing should be done b4 u consider if u r a surgical candidate.
Scroll to the bottom of this forum page to locate a link to the Health Pages for the Drs list.
"selma"
Thanks for the advice. I meet with my doctor on Monday and he's referring me to a neurologist. I'm a little uneasy, after reading some stories of how neurologists don't really identify Chiari as a legitimate problem, but the neuro guy my doctor recommended works in the same building as the WI Chiari Center, so maybe he'll be more familiar and be able to assess me better. Otherwise, the Chiari Center here accepts "applications" where you send in your MRI and a patient survey of your symptoms and then they contact you if they think you may have CM1. I'm just sick of the run around - migraines made sense, but the progressive fatigue and blacking out don't. I've had numerous labs drawn and have seen a couple different doctors.
Whether this is CM1 or not, I just want it figured out so I can feel like a 23 year old again and be productive in society :\
Just be sure to get opinions from several chiari drs, do not just get info from one bcuz it is close....
But I am glad u have a NL to go to, but once u have a DX u should be going to NS's...and unless u need a referral for ur ins, u can contact the ones on our list...this list is to help u research Drs and is not meant to be a referral...not all Drs on the list r true chiari specialists and u may not be comfortable with all of them...so do look at a few and compare.Find the right Dr for u.
hi :)
This one MRI pic isn't really the best slice to concentrate on. There are the 2 tonsils and they can be different sizes and what not. Take a look at my pictures on my profile... I just uploaded one of mine so you can compare. Sometimes, looking at the slice of the MRI that is right down the middle will show the least amount of herniation, but everybody's different.
Welcome to the forum! Also welcome to the club. I had the first symptoms in 2001. I went to bed one night just fine and woke up the next morning, stood up and fell back onto the bed. I was unable to walk a straight line, listed to one side, had terrible migraine headaches, vomitted, vertigo, and had a ringing in my ears. I also seemed to lose hearing in my right ear. I went to my doctor and he felt it was an infection in the ear. He said it would be gone in two weeks. He put me off work for two weeks. He then put me off work for another weeks, and another two weeks, and another weeks, and a month, and 6 months.....(well you get the picture). I was sent to a neurologist who did some simple tests and concluded that it was all in my head and I was craving attention. My doctor then sent me on to an ENT who tested my symptoms. After listening and checking me out he decided it would be prudent to send me to a balance clinic and the nearest hospital it was available in.
At this clinic the specialist did the balance test for Meniere's disease and concluded that the problem was not Meniere's and I was looking for attention and it was all in my head. I was off work for 27 months before everything finally got well enough that I could return to working with infants and toddlers.
Over the next 9 years I dealt with more bouts, more loss of hearing and the belief that it wasn't worth another round of tests and being told it was all in my head again. Finally I could no longer stand it because I was getting migraines every month. They lasted 7 days, required emergency visits for morphine and impaired my vision and balance.
I asked my doctor whether I shouldn't have a CT scan or MRI. Both of these happened and that is when the Chiari Malformation was found. I was no longer just a hysterical female; I actually had a condition and was being taken seriously for the first time in 10 years. In mid 2011 I felt like I had a huge weight taken off my shoulders because I finally new why all these things were happening to me.