Hello everyone! This is my first time posting here, I am a new member to this group and newly diagnosed with a Chiari 1 Maformation, as of August 2015. I was relieved to FINALLY have an answer to my years of struggling & being labeled as “crazy” by past doctors. But then once I realized what Chiari was, it has been difficult to accept that I will be living with this for the rest of my life. My first MRI that I had done in 2009 read as “unremarkable” so for the last 6 years of my life I have been suffering with awful headaches, neck & shoulder pain, dizziness, throat pain (lump like feeling) fatigue, ringing in the ears and some facial twitches (along with other odd pains in my arms and feet that fleet and may or may not be related). There is maybe one day a month where I can say “I feel great today” but then the same symptoms return. So this past August when I switched pcp’s bc my headaches were to the point that I could not tolerate-- they finally ordered a brain MRI which revealed the Chiari 1 Maformation… My herniation is at 8mm and I do not know if I have an associated syrinx. I had a Cspine MRI last week and I don’t see my NS again until next week… Really hoping I don’t have one! Outside of my Chiari, I’m 33 years old and a wife and mother of two amazing daughters. I’m an RN, I currently work as a part time school nurse and working on my MSN & school nurse certification. Up until recently I have been able to push myself through everyday, working, cooking and cleaning and running my kids to activities. I do yoga and try to eat very healthy. I am learning that I need to slow down and listen to my body when it tells me to stop! My NS agreed we could wait on the surgery at this point bc I’m TERRIFIED to get the surgery-- as a nurse, I worry about of the possible complications. Even though my NS is great-- it’s the hospital environment that really just screams me. I try to stay positive everyday-- and continue to tell myself, though this is very tough and a major “nuisance” it’s not life threatening and I have to get through this as best as possible. It’s nice meeting all of you & im looking forward to getting al the support I can get with this and giving support too 
Welcome to the group! I’m new here as well. I found out I had chiari in May of this year but spent five months with numerous specialists telling me my chiari wasn’t what’s causing all my issues. I finally found a neurologist that confirms it is the chiari and I see a NS on Tuesday.
I’m not sure whether to be afraid of surgery or rejoice it! I’m to the point I can’t walk but a few feet before my legs simply quit working. So it’s not like I have many positive options.
Good luck at your appointment next week and let us know how it goes. We are here to support you!
Thank you Katrina! I’m so glad that I found this group! I hope that your appt goes well too! It’s such and awful feeling to finally get a diagnosis and then be told that your symptoms have nothing to do with it-- yet we are all experiencing many of the same symptoms! My first neurologist told me the same thing & even my 1st NS. I sought a second opinion and had a great 1st appt with him and looking forward to the next appt— you are right though about the surgery, to rejoice it! I want to get to the point that I’m not afraid… Bc ultimately, I will need it sooner than later! Good luck to you as well & I look forward to hearing about your upcoming appt too
I had two neurosurgeons tell me I’m not a surgical case. But my symptoms rapidly change. From my research most people do this for years before they get where I am. I woke up one morning dizzy and five months later, I almost can’t walk.
I continue to listen to my body, trust my doctors (sadly with a grain of salt!) and push through until I get the answers I need to help myself. Even my current neurologist suggested I try a medication for a month before I see a NS. Well, in a month I may be bed-ridden and then it could take a month to see the NS…I’m pretty well OVER listening to doctors tell me to wait when my body is deteriorating so quickly!!
Maybe my family belittles the surgery because my stepdaughter had a golf ball sized tumor removed from her brain at age 15. That’s a BIG DEAL in comparison to the surgery they do for chiari. Not that I’m minimizing surgery, but maybe that just makes me feel better. 
I think any surgery of the brain is big deal! It does sound like your symptoms have developed rapidly. And that is the thing, some people are “fine” for many years, while others symptoms seem to come on more abruptly. My NS did tell me that he usually reserves the surgery for those that either are having difficulty when ambulating or their symptoms largely interfere with their quality of life-- I would say based on his standards it sounds like you would be a surgical candidate in my opinion. I worry each day what symptom I will wake up to, whether it’s the headaches or nausea or choking sensation etc… But not being able to walk would be so scary. I’m hoping you can get the answers you deserve and get the procedure quickly to reverse your symptoms!