I was diagnosed with Chiari 1 Malformation in September of 2011. My cerebellar tonsils protrude 8mm and I have recently started getting more symptoms again . I always deal with headache/neck pain...but now there's a lot more again. :/ Hoping I can get in to see a doctor again.
I was diagnosed in the spring of 2012, and my neurosurgeon gave me 2 options: surgery (which is what he recommended) or a wait & watch approach, which is what I chose. He told me that I needed to have an MRI every 6 months, sooner if my symptoms got worse. If you haven't had an MRI since 2011 I would definitely recommend you see a neurosurgeon and have one done.
Thank you for your responses! I did see a neurologist right after the MRI and told him how my symptoms bothered me a lot and he said because it's only 8mm, it isn't what's causing my side effect and that I don't need to do anything...I right away, didn't agree with that answer, after looking things up online. My doctor didn't even know what it was...she had to look in her medical encyclopedia. She acted like it was common and nothing to worry about. I just don't know what to do....is 8mm really nothing? I would think even if it's a little bit, everybody is different and some people would be effected more.
It's not about the size...I'm at 7mm, and my NS recommended surgery. It's about your symptoms. When I saw a NL I was also told that the Chiari wasn't causing any of my symptoms. Needless to say, she is no longer my doctor! Emmaline is right, you need to find a Neurosurgeon that is familiar with Chiari and won't dismiss your symptoms.
My herniation is 6mm. And I have symptoms.... a lot of them. But none of them are completely unbearable all the time. I still have more good days then bad days. So my NS isn't recommending surgery right now. I just saw him last week, and he said we could wait 2 years to repeat MRI's, unless my symptoms got worse before then. So its all a case by case basis.
My daughters chiari was found by accident after a concussion at the ER. She has been declining the last 3 years with tons of neuro symptoms. We were told to see out PCP and followupbwith him. He told us yes she had chiari but it didn’t look to bad and he didn’t think it had much to do with her symptoms. He said he would send her to a neurosurgeon just in case. The neurosurgeon said not only does she have a big protrusion but she also has syrinx along almost the entire length of her spine. He said waiting for surgery is NOT an option. My point to you is that you need to see someone who knows something about Chiari. There is lots of info to help you find someone in your area. My thoughts and prayers are with you.
I agree with the above. Find a NS who has experience with Chiari. My herniation on my first MRI was 8mm and after getting the run around I found a good doctor and had surgery and I feel so much better! My NS also told me if I opted out of surgery I would need MRI's every 6 months so you are definitely past due for another!!!
Thank you all very much! All your feedback helps a lot! I am hoping I can be checked asap cuz I am tred of feeling sore and painful every day...not to mention other weird side effects that randomly come and go. Good luck to everybody else too! Thank you so much, again!