I developed sudden onset orthostatic intolerance and a host of other complicated autonomic symptoms two days after a terrible snowboarding fall. I landed on my tailbone on the ice while going really fast in the moguls on my snowboard. Whoops! I got knocked out, and the force and momentum I had made it feel like my tailbone pushed upwards and my entire spine did an accordion movement and the weight of my helmet and skull pushed down on to my neck. I have never felt anything like that in my life. I had a major headache when I came to and my fingers and hands were tingling, but thankfully working. I ended up in the ER two days later and they totally ignored my concern that I might have a concussion or some kind of spinal injury. Two months later I finally got an MRI, without contrast. I was in the ER and they were only looking for a brain bleed, and they said it was normal.
Fast forward two years later (having symptoms the whole time, including lots of weird head pressure sensations at the back of my head, near my neck) and I got diagnosed with autonomic and sensory neuropathy as a result of Sjogren’s Syndrome. I have been treating the Sjogren’s aggressively with good results, but I still have this horrible neck crunching sensation and breathing problems that get better when I crunch my neck. I had a newer MRI of my brain, cervical and lumbar area done. Nothing abnormal except some cervical joint damage, C4-C7. I haven’t had any new injuries, so my hunch is that is just the injury from my original fall and maybe it is just finally showing up. Maybe it’s just a better radiologist.
Final thought, I had one doctor who thought I had EDS III, but two others that didn’t. I know what to believe, but my sister and I have always been very bendy girls. I’ve heard that EDS has a connection to Chiari, but I’m not sure about that.
So here are my questions…
(1) Can you develop Chiari or a Chiari like problem from the type of injury I described?
(2) Is there any specific test I should talk to my doctor about to make sure it isn’t a Chiari issue? I can’t have MRI contrast dye or CT contrast dye due to allergies. I have had bad reactions to both. I have had laying down MRIs, but never had an upright one. Is that better for diagnosis of Chiari in some patients?
(3) Can anyone recommend a good doctor to diagnose/rule out Chiari in the NY area? I’m not looking to have surgery. I just want to know what I have going on, because treating my Sjogren’s has helped so much, but it never explained the neck crunching and weird head pressure stuff. I know the Chiari Institute is in NY, because it’s very close to my house, but I heard they only see patients who are severe enough to require surgery. I don’t think I fit in that category.
I was in a MVA 8 years ago, I started having headaches and numbness along with a host of other problems I hit my head on a radio box in a truck. I did a MRI months later and found that my c3 c4 had a Buldging Disc. I went throught rehab after rehab and nothing helped. 8 years later I had Brain MRI that shows Chiari. Its hard to ingore the symptoms happening right after the accident. So I feel like the accident did cause me to have a Chiari flare up. However good luck finding a NS that will back that story up. I have found a little research were they are trying to see if head/neck trama can cause Chiari.
To answer you r question. An adult can start to receive symptoms of Chiari. The thing is it's not something that someone just develops. Arnold Chiari Malformation is congenital and can be hereditary. Usually Chiari is discovered at birth because it's something that you are born with. However some people usually don't start having really noticeable symptoms until they are an adult due to some kind of head trauma or whiplash. I discovered i had Chiari when i was rear ended at 65 mph on the freeway. After the accident is when i started getting really sick and then i had the surgery.
Yes, you can! Not all Chiari patients are genetic....I am living proof of that. I was in a serious car accident in 1997 (when I was 22) and MRI's and CT's at the time were completely normal. Fast forward to 2009 and a serious motorcycle accident (no head trauma), and 2011 a cliff diving accident that lead to rapid decompression and concussion. That was when my symptoms started and just before Thanksgiving I finally convinced my doctor I wasn't crazy, and that something was seriously wrong. MRI shows Chiari, and a week later I was at a NS who confirmed and agreed that the cliff diving accident did it, and this week go for Cervical and Thoracic MRI's to see if I have a syrinx. So yes, it can happen from head/neck trauma!
I am a newbie, but have come to learn from this forum because my long term diagnosis of MS fits my clinical picture less than chiari. Recently I took part in a clinical trial of the upright MRI as an MS patient. The results were quite surprising: low-lying tonsils "corking" my canal with resulting back jetting/pressure and severe aberrant flow throughout the brain. With that background I would like to respond to your query.
1). My head and neck symptoms started after a low-impact rear end collision 2 years ago after a very active athletic life with minimal issues with my benign MS. Upright MRI evaluated by trauma specialist shows distinct damage from impact.
2) I've had a number of mri's over the years. The cerebellar tonsillar problem and resulting CSF flow issues (pressure, dizziness, etc.) showed up on the cine flow upright very clearly. Never picked up on the recumbant. The positional shift makes sense...that's how we live our lives...upright. Or, we try to.
3) I received some non-surgical treatment in NY that is helping from Dr. Scott Rosa In Rock Hill. He is a trauma researcher who also did my upright mri's. The results of his recent study will be published this year.
I realize that this approach is not common, however thinking outside-the-box may be a valid approach for some of us. I have started to feel better and repeat MRI indicates my CSF flow has improved.
Hey Bonnie,
I just wanted to let you know the original post you’ve responded to is over 10yrs old and many of the members posting in that thread have moved. You may wish to ask your questions in a new topic.