Chiari Online Support Group

Whiplash associated with Chiari?

I just found these videos, and was curious as to how many of our members experienced some form of whiplash or head trauma before having symptoms and getting a Chiari diagnosis.

Most doctors believe you are born with Chiari, but since most of us didn't have MRIs as babies, there is no way to know for sure.

These doctors did a large study of 1200 participants who had neck pain. They split this group in half:

Patients with NO trauma or accidents prior to neck pain

Patients who had whiplash or trauma before their neck pain started

Then, they did two different kinds of MRIs. They ended up with four groups which were:

Non trauma upright MRI

Non trauma laying down MRI

Trauma upright MRI

Trauma laying down MRI

They checked all of these patients for cerebellar tonsil ectopia (CTE), also known as Chiari. What they found was incredibly interesting.

For the patients who had NOT had trauma, there was no difference between upright or laying down MRI, and about 5% of the group had Chiari. There are no current numbers as to what percentage of the general population has Chiari, but it is likely higher than the "1 in 1000" quoted in 2006. 1 in 1000 would be .01%.

For the patients who had trauma, there was a huge difference between upright and laying down MRIs. Almost 10% of the laying down trauma group had Chiari. This is twice the amount of the group which had NOT had trauma.

23.3% of the upright group had Chiari. Almost 1 in 4 of the neck pain patients who had recently been involved in an accident or had whiplash had Chiari when upright.

Can you imagine? How many people do you know who've had whiplash, had a concussion, hit their head really hard, or fallen and their necks hurt afterwards? If you think about all of those people, then imagine one out of every four of them has Chiari when standing up. Which is when everyone complains of pain right?? I feel pretty good when I lay down, but when I stand up my neck and head hurt.

These doctors did more imaging (MRIs, X-rays, CT scans), and believe the problem is the small ligaments at the top of the spine. Which makes sense to me, because ligaments are weak with Chiari patients in general, because most of us have an underlying connective tissue disorder. We also have problems with instability, wobbly heads, and weak necks.

They believe when trauma happens, it weakens or damages those small ligaments. That then allows the bones at the top of the spine to move. Which is bad when you stand up, because they are now subject to gravity, and are no longer supported by whatever you're laying on. And when those bones move, they change CSF flow and pressure, they can compress or irritate the spinal cord, and both of these things can have devastating effects.

I've included links to the videos, and a link to the research paper.

So, as you may know, traditional chiropractic is a no-no with Chiari patients. The high speed neck adjustments can be really dangerous for us.

Atlas Orthogonal (AO) is chiropractic, but is very different from traditional chiropractic. They focus on the top bone of the spine, known as the Atlas, or C1. They do thorough imagining to figure out what position the bone is in. Then they use sound waves to gently move the bone into the right position. There is no popping, crunching, jerking, etc. They are VERY gentle with the head and neck.

I've been using AO adjustments for the last year, with excellent results. This is the first time I've seen these videos or research paper, but they mesh with what I've grown to understand about Chiari.

Most of us have connective tissue problems. Upright MRIs are way better at seeing herniation and instability than laying down MRIs. Traditional Chiari surgery is not effective for patients who have instability. And those loose bones (C1-C2) are probably from ligament problems.

I asked my chiropractor last night if AO would fix my loose ligaments. He doesn't know if it'll fix the ligaments, but he does know we can keep my atlas in the correct position with regular adjustments. It's very noticeable now when my atlas is out, because I get a headache.

As a side note, I've had multiple traumas to my neck and head. My migraines started after falling off a horse at 12 years old, but I don't recall hitting my head. My herniation is the same laying down or sitting up, but I do show cranial settling while sitting up.

If you've made it this far, please let us know if you've had trauma and/or have seen an Atlas Orthogonal chiropractor.

Jim McMahon, a retired quarterback for the Chicago Bears, credits Dr. Rosa with fixing his horrible migraines: http://www.deseretnews.com/article/865587776/The-fighter-Former-BYU-NFL-quarterback-Jim-McMahon-aims-to-win-the-toughest-challenge-of-his-life.html?pg=all

Research article: http://traumaimagingfoundation.com/wp-content/uploads/2014/06/Chiari-Whiplash_Brain-Injury.pdf

This is a video from the inventor of the MRI: https://www.youtube.com/watch?v=7ENXw4ECwPg

Part 2: https://www.youtube.com/watch?v=I8KGFUlPGLE

And here's Dr. Rosa discussing whiplash, audio only: https://www.youtube.com/watch?v=wY5rMzludqs

I am going to delve into this! I have suspected this type of issue is compounding the whole Chiari thing. Carry on the good research!

This info is really interesting. Thank you for sharing it! I became symptomatic and found out I have Chiari after a whiplash injury from a car accident. I had never had any symptoms before that and my neurosurgeon did say that he feels the whiplash worsened or exacerbated the Chiari to the point that it became symptomatic.

Thanks for the information. My symptoms came soon after a head injury and possible whiplash. I’ve actually had two separate concussions…but the latest definitely brought on CM symptoms…daily headaches, vertigo, head pressure, blurry vision, etc…I’m still working through issues with my neurologist to pay attention to my CM (5mm) as of my MRI (lying down). I’ve had migraines most my life and in hindsight, they always seemed to be triggered by weak neck related issues! Thanks again for information… More data to help me talk to my sceptical Drs!

Mandy,

I had a whiplash incident which caused immediate issues for me. Prior to that day, I never had any health issues. Now, be prepared for this. This happened in June 2010 with first MRI 2 weeks after incident where low lying cerebellar tonsils were noted and radiologist said rule out Chiari Malformation clinically. This translates into does the patient have chiari symptoms. Considering that I immediately experienced bilateral arm and leg weakness, constant dizziness/lightheadedness, visual problems, palpitations, nose running like a faucet, memory problems, etc. many doctors disregarded the comments on my MRI. One of my many drs. wanted me to collect the fluid running from my nose which I did not ever get to do. Apparently he had the same impression that my 3rd NS thought. This was that I sustained a small spontaneous CSF leak due to the whiplash which herniated the cerebellar tonsils. The NS thought decompression would put me back to normal. Shipped back to another NS and he said no. Went to consultant who acknowledges the tonsils being problematic. Went to another NS he acknowledges the "Chiari" but doesn't advise surgery now. Went to geneticist last week (almost 5 years after whiplash). She feels Ehlers Danlos is what provoked the cerebellar tonsil issue. Go figure......

All my MRI's note 3-4mm herniation....the Chiari specialist noted 6mm on same films. I truly believe he knows what he is talking about. I am coming to understand more about this EDS. Thankful to have had the opportunity to consult with 2 of this countries best doctors for these conditions has made it more tolerable as they have the knowledge and understanding to explain things properly.

I hope this helps.

I can't remember how old my daughter was - maybe 10? - when she did the bumper cars at the boardwalk. After that, she had the worst migraine ever, or what she thought were migraines. She went steadily downward until she had the decompression and has been fine ever since. We think that the bumper cars must have set the Chiari in motion.

Wow! Very helpful

Thank you for this very interesting information. I also am very interested in how many members began symptoms after head trauma. I lived my whole life not being symptomatic and having no knowledge that there was anything like a condition called Chiari and I am in my sixties. In 2006 I had an accident and injured my shoulder severely. I also had some injuries to my face when I hit my head on the concrete which were checked by X-ray. However at that time no one did a MRI of my head. By 2013/14 I was having a variety of symptoms but it was a trip to the ER and an MRI there that discovered it was Chiari causing the problems. My neurologist told me the very first visit after spending time with my history and examining me that he feels my symptoms began with the head trauma at the time of the accident.

That is very interesting.

I have been rear ended four times, none of which I hit my head. After the second one I was diagnosed as whiplash, and the third a concussion. My head aches got worse with each hit. I had my lying down MRI after the third one. So I am now curious how that differs since my fourth one. After which my symptoms hit an all time high.

I am currently seeing a concussion specialist and have found that the most helpful treatment I have had in my 2.5 years of daily headaches

I have had 2 car accident's one was a rollover , my seat belt malfunctioned came loose and my head put out the windshield..

The other rear-ended by a college student at a stoplight talking on her cell.. The light turned green but no one was moving, I was sitting in back with the kids and was turned to the left facing them. When she hit me I didn't go forward I hit the back of my head on the passenger window.

2 yr's later I went for surgery for Thoracic outlet Syndrome. It went terribly wrong, my 1-hour surgery was 5, my overnight turned to 7 day's. They cut my right Diaphragm, cur several nerves in neck and shoulder which resulted in a winged scapula and Chronic pain. I was also told at the time I had fibromyalgia.

I recently read a few stories where people were misdiagnosed with Thoracic Outlet Syndrome the patient's ended up waiting and not having the surgery for T.O.S and found out it was Chiari's..

I have had great success with the chiropractic treatment's you're referring to. I also see an Acupuncturist once a week that with the holistic meds and change in diet has made a huge difference in how I function!

Looking forward to reading other stories..Deb

Interesting indeed! My Chiari was actually found during an MRI for headaches. Why i am saying this is because i was involved in an accident about 4-6 months prior. I was the middle car and was rearended when i was at a dead stop and pushed into another vehicle. I started having worse headaches an sever back pain about 2 months after the accident adn so i was referred to a neurologist. When she told me about the chiari, i was a little scared at first. then when i looked more into it, it explained a number of problems i have had my whole life. really bad light sensitivity, my back and neck always being so stiff and sore if i stretched or sat wrong, and even the way some of my headaches were. Ironically though, my open MRI i had for headaches years before didn't catch it, which i was told was common since it wasn't enclosed. But this article... brings up a conversation i recently had with my neurologist about teh accident i was in and a few other things we talked about. In my case, being inthat accident just brought everythign to the forefront and into the open where it was more insistent and noticeable. As odd as it sounds, it was both a curse and a blessing that it happened.

Hmmm...she was 15 and she's 21 now, so it's been six years. Already! So far, so good ...

After my accident , they didn't do an MRI !

They ex rayed my neck back put me in PT. I was in constant pain and that's when I was sent to the Surgeon for TOS.

That surgery was 2006 and I was in so much pain,after all the damage they did every time I tried to say something else was wrong they just chalked it up to chronic pain..

In 2008 after I lost 25lbs in 6 wks my heart was acting weird I was sweating buckets and very weak they finally did an MRI.

That's when my GP threw up her hands and said I took too much time and I needed to seek a specialist?

Thank Goodness the Radiologist caught it, I had to research and find out what it ws and who to see myself!

2012 I finally had surgery..


That is interesting. I lost almost 25 lbs. within a month of my neck trauma/whiplash. My MRI was a week after the incident. Clearly state the herniation and no on did anything. Not sure if they chose to ignore it or didn't understand what it was. Still have it....still waiting.


DLM said:

After my accident , they didn't do an MRI !

They ex rayed my neck back put me in PT. I was in constant pain and that's when I was sent to the Surgeon for TOS.

That surgery was 2006 and I was in so much pain,after all the damage they did every time I tried to say something else was wrong they just chalked it up to chronic pain..

In 2008 after I lost 25lbs in 6 wks my heart was acting weird I was sweating buckets and very weak they finally did an MRI.

That's when my GP threw up her hands and said I took too much time and I needed to seek a specialist?

Thank Goodness the Radiologist caught it, I had to research and find out what it ws and who to see myself!

2012 I finally had surgery..

This is a question I have actually pondered myself. The first symptoms, which for approximately 5-6 years were text book for MS, followed a throw from a horse and hitting the ground twice at upper back and neck area. (Hit so hard first time bounced up off ground and landed at a distance again-do not remember first hit ). My grand daughter hit me in the nose with a cabinet door around June 2014 just under my right eye, found out later was fractured. August 28, 2014 went to the hospital after work for rapid heart beat , high blood pressure, extreme nausea and massive amounts of “floaters” in vision fields. Had a decompression 9/11/14. Oddly enough herniation on left side was 5-6 and the right side (impact side) was 7-8 … Thank you so much for the article and links very interesting

Hi Mandy:

Thanks so much for the fascinating post and links to helpful info regarding whiplash trauma, Craniocervical Instability (CCI)/Craniocervical Syndrome (CCS) and Chiari (CM).

My story is similar to a few others who experienced trauma that triggered problems with CCI and Chiari. I was involved in a nasty bicycle accident in July 2010. I suffered a concussion and had retrograde amnesia for 5-6 hours. One of the amazing subplots of my story is that I finished my 15 mile bike ride, put my bike on my SUV bike rack, drove away, got gas, stopped and bought a smoothie (I had recepts in my wallet from the purchases) and made it home. I don't remember any of this. My ex-wife found me sitting outside our garage with a laceration above my left scapula and my bicycle helmet had a 4-5 inch vertical crack over the left occipital/temporal area. I have no doubt if I was not wearing a helmet that day that I would have been killed. I kept on asking her over and over if I had put my bike away.

I was taken to a local ED associated with a well-known medical center and had some radiographic images and a CT scan done. I was released the same day in stable condiition. Fast forward around 7-8 months later--I started to develop two very troubling symptoms--terrible posterior skull headaches and chronic hoarseness. Both symptoms would get worse toward the end of the day after I had been upright and functioning all day long. I have sought treatment from some of the finest health care institutions in the US and still do not have a definitive diagnosis. I have also had a wide range of treatment from two rounds of anterior cervical discectomies and fusion (ACDFs) to CSF leak repairs to Botox injections for spasmodic dysphonia and cervical dystonia to other ENT surgical procedures to resolve my vocal cord weakness problems.

My first inclination regarding what diagnosis my problems may be linked to was an intracranial or cervical CSF leak. I think this has been ruled out through various diagnostic tests and procedures. I had reviewed literature about Chiari before. In August of 2014, I went back to considering CM more seriously because I noticed that many of the symptoms that I had been experiencing for a few years were similar to those that a CM Type I patient experiences. One of the big obstacles I have encountered is that the NSs who review my images do not see severe cerebellar tonsillar herniation and therefore will not schedule me for evaluation of my problems. From reading the accounts of many members of this support group, I am sure that this comes as no surprise.

My 4 brain MRIs have all been done lying down. I think an upright MRI will be of diagnostic value given that my symptoms get much worse when I am standing or sitting. My daily suboccipital headaches are very painful and also cause intense pressure. For months now, I have had more consistent episodes of paroxysmal atrial fibrillation--heart palpitations. In addition, I have a constellation of other neurological symptoms that CM Type I patients experience.

Through your insight into CCI/CCS and CM, I have gained a lot of knowledge about the potential cause of my symptoms. I am convinced that the trauma of my bike accident has resulted in ligament damage in the C1-C2 area and the corresponding issues that you explained so clearly in your post--CSF flow disruption and brainstem compression--have resulted in the often debilitating symptoms that I suffer from on a daily basis. I am taking steps to see an NS who has experience treating folks with CCI/CCS resulting from whiplash trauma. I have also contacted a local chiropractic office that specializes in Atlas Orthogonal adjustment.

I guess one could say I am the poster child for CCI/CCS symptoms triggered by whiplash trauma. I don't seem to have any underlying connective tissue disorders that would have resulted in the craniocervical instability. As I continue my journey back to better health, I will be sure to keep the group posted on my progress.

Regards,

MC

I actually had a horrible car accident in 2009 and I was just diagnosed last year with Chiari. My pain Dr. just referred me to Dr. Rosa & I'm hoping he can help cause nothing else is helping right now.

Hey Mandy,

To some extent I could agree that the whiplash can cause brain injury such as CM but what is the thought when those individuals with acquired CM give birth to children with CM???
And the factor of EDS, MC?
I do believe there are some cases of CM that are caused by whiplash however understand a big picture and to be an advocate for the children being born with CM from those "whiplash" case can cause a falsehood of responsibility.
I know for a fact I received my EDS and CM from a parent and my grandmother before that. I believe spending my efforts staying in line with my personal facts will not only help me understand the bigger picture and the possibility we are just scratching the surface on the cause of CM, EDS and MC.
There is no way this is a freak accent.
I do believe my CM became systematic after the whiplash, and was the biggest blessing in disguise!
I do enjoy keeping this discussion open, to not only to spread awareness, but to also help our Chiari Families keep an open mind. But I do know it is medically confirmed that I gave my son my CM & EDS, could that be from MC?.
Brenda (Bea) Yung

Hi neighbor Mandy, I live in Friday Harbor & find your info interesting & wondering how my 10mm chiari is effecting me. I did have a whiplash & concussion from a car accident 23 years ago, wondering if that made me susceptible over time. I survived a ruptured brain aneurysm almost 4 years ago, it was coiled and monitored, as I have other brain aneurysm, with MRI-MRA’s. It wasn’t until an angiogram about 2.5 years ago that the 10mm Chiari 1 showed up. The angiogram and more MRI-MRA’s showed the coils had moved & I needed a craniotomy to clip the aneurysm, which I did 1.5 years ago. Since that surgery I started having vertigo a few months after, and still have cloudy-foggy brain days that I’ve had these 4 years. My neck, scalp often feels tight and low grade ache. My Occuptional Therapist, well trained in many treatments, has been treating my neck with western & eastern massage, circulation stimulation, ultrasound, and gentle stretching exercises. It helps, as we think all the tightness can effect circulation. Do other folks with Chiari also experience vertigo and/or foggy brain days?

I was diagnosed one day after being rear-ended in a car accident at a high rate of speed. I was the front car out of three. I was also post neck fusion 2 years C-4 through C-7. I find it very odd I was never dx until the day after the accident and also had a neck fusion?!?! Hmmmmm. I would love to find some info on this and was just talking about it. Thank you! Any other info I can share, or you....I would be happy! Thank you!!!!!!!!