I’m so glad to find a support group. Thank you for adding me!!
My symptoms stated after a car crash. My doctor sent me to the neurologist and after we got the MRI back he told me I had Chiari Malformation type 1. He has me on a few different medications which work pretty good.
My questions are did anyone else have a car crash before they found out?
And do you get weird side effects? I’m on topamax cause when I tried fioricet it didn’t work. I get dizzy and my balance is off and sometimes I feel like I’m going to throw up.
My neurologist says Chiari probably isn’t the cause of my symptoms so I am really glad he found other things to help.
I kind of had the same thing. It was a car crash that sent me on my quest to 'be fixed', many years ago. Turns out that many years and many Doctors later they looked past the accident and saw genetic autoimmune. It answered many questions I had over the years.
My Rheumatologist told me that I'd be surprised how many things are discovered following auto accidents! Guess it's because they really take the time to look us over.
I am sorry to hear about what you have gone through. I have been blessed to have finally found a wonderful NS....
Dr. Dan Heffez from Milwaukee Wisconsin.... Please check out his website...it is very educational and he has just updated it..... www.wichiaricenter.org There is a lot of wonderful information there that I hope and pray that can help all Chiari patients...and with other spinal issues that he addresses on his website.....
You do not say exactly what symptoms you are having but the emergence of primitive reflexes from physical brain stress can bring on dizziness, balance issues, nausea and vision problems among others. Doctors do not state these as true Chiari symptoms as they are so general as to include many of the patients that they see. Makes sense as they see people with brain problems! Surgery does not always make these symptoms go away as they need to be extinguished with exercises that engage the frontal brain. These exercises can help with the softer symptoms of CHiari before surgery but they need to be done regularly. Good luck to you
PS the Wisconsin Chiari center listed by Mary Lou mentions reflexes. I just emailed them to see what they have to say!
My daughter was in a car accident when she was in 8th grade. She was diagnosed several months later after symptoms worsened. My son has Chiari as well and her symptoms seemed suspicious. Neuro knowing history of my son having it ordered MRI where it was confirmed. Her herniation is not as severe as my son’s but she has far more symptoms. She seems to be getting more symptoms as time goes on. If you have any questions I am happy to help in any way I can.
Hey, just wanted to let you all know that I was in a car wreck February of 2011. I am presently in a lawsuit to prove that I may have been born with Chiari but was not symptomatic until after that wreck.
Hi rickie lynn, I certainly understand how you feel, after my last car accident, I was in intractable pain, waited 6 months to see each surgeon, at top hospitals in the DC/ Baltimore area, only to be told that surgery would only ever make my back worse. Come to find out, it’s not only injury, but denenerstive autoimmune arthritis, the spondylitis type that targets the spinal cord from the tail bone to mid skull.
It’s incredibly disheartening, but to avoid lawsuits, we cannot mention names of Doctors except in a positive light. Saying that you do not recommend them is allowed.
I am ever hopeful that surgical abilities and techniques can change our status. It surely would be great to ‘be fixed’. I’m ever hopeful! I’ve seen so many Dovtors in the last decade, there are all kinds, but I do believe there are some that are fabulous. Hope you find one!
My chiari was discovered after a car crash in the spring of 2013. Took nearly 6 months to diagnose and mine was 14mm long! Horrible headaches, dizzyness, feeling like i would either throw up or pass out. Spinal fluid was severly blocked. We held on the surgery until summer 2014 when it was more convenient with work. MRI last summer revealed that the spinal fluid flow was better than it was year before and the length of cerebellum shortened 2mm. Needless to say, I am a grateful freak of nature but i would definitely advise to pursue all other options before surgery. I did accupuncture and learned how to deal with the pain and eventually it went away.
Positive recommendations are allowed. But no negative, it’s to keep from being sued. This is in the Bens Friends guidelines for membership on the home page.
I just had MRI since not improving after whiplash injury in 10/13 & discovered 1.05 cm
malformation. Still researching & haven’t told anybody. See neurologist in about a week & a half.