Was just thinking about my most recent visit to hospital, I remember the nurse saying "well everyone has 4 mm herniation " can you belive the ignorance? I was also told my symptoms were not chiari related, although after reading through other stories here, I’ve learned it’s not the herniation neccesarily but if there are flow issues? Idk sometimes I feel like I may be going nuts with all the back and forth!
Any advice appreciated!
Hi Sara, I have had nurses say they have never heard of Chiari! I had to do a 1/2 consult over the phone with a nurse to get my healthcare incentive, she couldn’t help me since she didn’t know what Chiari was! My Nuerosurgeon, Dr Heffez, said it doesn’t matter if the herniation is 1mm or more it’s Chairi and you will have spinal cord compression and may or may not have symptoms. A 1mm herniation can cause similiar issues of a 10mm herniation. Everyone is different and the onset can be lifelong or appear as an adult. What sysmptons are you having? Talk with you soon, Tina from WI
Hi Tina!
Thank you for the response and validation. My symptoms have progressed over the last 6 months I would say. Before that they tended to come and go and I’d have flare ups so to speak. How big is your herniation? Not that it matters like we’ve established! Here is a list of my symptoms
Extreme headache and neck pain (the headache feels like pressure and I can barely lift my head because my neck hurts so much!)
Decline In vision, some times it is fine, other times I can’t focus my eyes on anything!
Also eye burning and runny eyes
Numbness or pins and needles down my neck and a burning pinched feeling between the blades
Numbness of finger tips and toes, no feeling in big toes!
Weak arms muscles after short exercise (low impact)
Headache worsened by deep bending, going to a lower level of the house ect
Unstable coordination and dizziness ( walking into things, especially doorways)
Swooshing sound in ears( ears extremely sensitive to cold) same with handsome and feet!
This may sound odd but sometimes it sounds like my skull at the back is cracking or something
Also my neck has a squishy spot so to speak that could possibly be a synrix? Who knows
Racing heart and palps
And I also have gastro and kidney pain that I’m not sure is related but while Im here might as well add it
Perhaps the most notable thing for me as well is I feel like I’ve had a steep cognitive decline with thinking and speaking, sometimes I jumble things!
Anyways I’m sure I could possibly have a few more, but these are the ones that have bed ridden me!
Thanks again, Sara from CANADA
No ignorance on the nurse’s part, don’t know that everyone has 4mm as everyone hasn’t been tested. But over 60% of normal MRIs show 4mm or so ( about a dozen sheets of bond paper) I suppose you could say it’s abnormal not to have 4mm.
Only .77% of folks with 5 or more mm are symptomatic. The problem is cost flow and has no relationship to herniation. There are many folks who are symptomatic with NO herniation. (Chiari zero) What’s pathetic is that NS are still clinging to the whole Chiari as being the cause idea and performing surgery’s that don’t treat the issue. It is becoming increasingly difficult to find a chiari specialist and becoming more so. The popular ones seem to either be retired, left the country, or are in prison. Syringomyelia is a different bag.
So why is there so much ignorance? For the most part, chiari in the USA is a contrived disease with consumer driven treatment by entrepreneurial surgeons. Its not a matter of ignorance. It’s a matter of it simply not existing in most cases. Thegitimate medical community handles it much differently and find the real cause of symptoms (there are many) they can and will treat chiari but under very specific conditions that may or may not be related to the herniation.
The symptoms are severe but there is better ways of treating it and that area is expanding.
4mm is absolutely not “normal”. For example, a review of 1,200 MRI’s found that among those with neck pain, but no history of trauma, they had about a 6% chance of having ANY herniation (>1mm). After trauma the number goes up to 23%. (Source: http://www.tandfonline.com/doi/abs/10.3109/02699052.2010.490512)
Furthermore, a recent study, reviewing thousands of MRIs, found the prevalence of tonsillar herniation of 3-5mm to be less that 3% for women and only .5% for men. (Source: http://dergipark.ulakbim.gov.tr/anatomy/article/view/5000191676/5000167316)
I could go on and on with peer-reviewed evidence that refutes the idea that 4mm herniation is “normal”.
Your brain is supposed to sit within the skull. It’s not supposed to stick out of the skull.
This isn’t a “contrived” disease. If it were “contrived”, surgical outcomes would be radically worse than what is shown in the literature. It is recognized and treated as a real disease by the nations top rated neurosurgical centers, including: Mayoclinic, UCLA, John’s Hopkins, UCSF, Cleveland Clinic, Stanford, etc., etc.
The nurse is either ignorant or not telling the truth. Herniation is not normal, and your symptoms are very suggestive of Chiari.
Hi Sara, if you have a touch screen computer, you can touch the T in the circle and it will give you my profile/story. I have a 5mm herniation laying down, tinnitus too. Also diagnosed with degenerative disc disease and congenital Cervical Spinal Stenosis, less than 9mm in my neck area. I have many of the same issues as you. Went to therapy once, need to make another appt. Tina from WI
You best read your studies before posting them. In the first study both groups including the control were symptomatic and the study was comparing trauma to non trauma cases.
And more importantly differences. the posture of the patient during the study. They were significant. 23% of non trauma group when scanned in an upright position had CTE which by definition is 5m.
The second study used the 3-5 mm cut off as well as measured from opisthion-basion line but excluded the opisthion-basion prosphenion angle in their calculations. Also they also stated virtually NO herniation below 5mm is symptomatic, which pretty much blows the whole study.
It is not a disease at any of those centers it is a recognized malformation and rarely is treated surgically (well I can only speak of the two I was involved with) as they look for the csf abnormalities or syringemelia as critical to a surgical situation. They are not “Chiari Centers” which is a very important distinction.
In the academic centers where generally they won’t operate unless there is a syrinx present a herniation of greater than 5mm, and/or demonstrated csf issue (and they don’t use a cine MRI as the standard) they still have 22% complications and a 30%+ failure rate within 5 years. Not to mention a surgical mortality of 2.2 per 100. (As opposed to 8.9 per 100000 for general surgery.) These are UCLA 's figures.
Of course it’s real but the etiology in adults is hardly clear and certainly is not related to herniation alone as the studies you cited clearly indicate.
TJ
I think that’s a great idea. That’s why I chose to read each study before posting them! 
Yes. Since they are symptomatic, we would expect the rate of herniation to be greater than the normal population, and it is. Even in this ideal population, herniation is not “normal”. 23% is a long way from 60%.
A few observations:
I agree that posture has an impact on the herniation. But the ideal population (neck pain, trauma history) with the ideal test (MRI in a position that encourages herniation), showing up to 23% prevalence is contrary to the notion that herniating is “normal”. It isn’t even “normal” for the most ideal study group under the most ideal conditions.
It’s possible that by just reading the abstract, you could come to the wrong conclusions. You say that they used 5mm as their definition of CTE. Here’s what the study says:“This study reports that patients with a history of motor vehicle crash-associated neck pain have a substantially higher frequency of cerebellar tonsillar ectopia of 1mm or more than non-traumatic subjects”
5mm herniations were very rare (i.e. far from normal), even in this ideal population:“Tonsillar herniation of 5mm and more was rare in all of the groups; there were a total of only six cases in all groups…”
Furthermore, the 23% prevalence is referring to the trauma group NOT the non-trauma group. Read the quote above if you need more clarification.
[quote=“ModSupport, post:7, topic:9738”]
The second study used the 3-5 mm cut off as well as measured from opisthion-basion line but excluded the opisthion-basion prosphenion angle in their calculations.[/quote]
Do you think that including this angle would increase the prevalence from 3% to >60%?
While the authors might have thought that, they didn’t actually analyze symptoms with this study group. “One of the limitations of our study is its retrospective design, and we could not analyze clinical symptoms and signs of the patients since we only examined their MRI.” Besides, the study was referenced to show that 4mm herniation is not a normal finding (you said over 60%) not that most people with 4mm herniation are symptomatic.
The top rated hospital in America for neurosurgery and neurology, the MayoClinic, treats over 1,300 cases annually. Just because there are places that identify as “Chiari Centers” does not mean that they are somehow illegitimate. We wouldn’t call all “Cancer Centers” illegitimate just because there have been a few that took advantage of people.
It is not uncommon for surgeries to have success rates of around 70%, especially with rare conditions. If fact, 70% isn’t bad at all. If Chiari were a contrived condition I wouldn’t expect that cutting into a person’s neck and removing bone would result in 70% success rates.
I agree. I don’t think herniation size matters when it comes to symptomatology. Research has demonstrated such. I also agree that probably most herniations are asymptomatic. But, when someone presents with the classic signs of Chiari, has radiological evidence, and has other conditions (MS, tumor, craniocervical instability, IIH, etc.) ruled out, tonsillar herniation must be taken seriously in order to properly treat the patient.
A pretty good summary that considers not only position and angle and summarizes results from over 22,000 MRIs can be found at: http://radsource.us/chiari-i-malformation/ In short NORMAL herniation (No symptoms) for all subjects is 2.8mm Granted not 4, although a single standard deviation would include 4 in that number.
When you are talking success rates 70% is not as good as you think considering ALL elective surgeries have a placebo effect of 35%. A success rate in academic center where patient selection is based on far more than “herniation and symptoms” would be the expected outcome as opposed to the "we must operate private clinics"because you have herniation and symptoms.
I think you misunderstand my use of the word “contrived” There is a huge difference between what an academic center does and the now “over with” “Chiari Centers” (although a few remain). Symptomatic Chiari is indeed a serious situation and requires treatment when the symptoms can be clearly attributed to the chiari and not some of the several hundred other known causes.
The “contrived” when I use it, refers to the pleurethra of NS who started phony support sites, patrient testimonies, and keyword spamming trolling for patients. The first 6 pages of a general search involving “chiari” is loaded with these guys and their sponsored education sites.
I’m not defending the “nurse” nor can I condemn her. Herniation is very common and you can find a “study” to argue to her position either way at will (keep in mind over 90% of peer reviewed studies are disproven at some point by another peer reviewed study my experience as a reviewer was much higher) The fact remains despite what ever numbers you adopt based on what ever study is out there, Chiari I malformation is a not uncommon abnormality that may be encountered in MR imaging of the brain or cervical spine.
In academic centers, the most commonly used criteria for diagnosis of Chiari I malformation is cerebellar tonsillar ectopia of at least 5 mm below the level of the foramen magnum. A variant based on a study by Mikulis et al. recognizes changing cerebellar tonsillar position with age, with cutoffs of 6 mm up to age 10 years, 5 mm in ages 10 to 30 years, and 4 mm in ages 30 years and older.13 However, all authors agree that cerebellar tonsillar ectopia should not serve as the sole indication for surgical treatment. This not the case in far too many “chiari clinics” who are offering false hope for the small price of $100,000.00+ and do repeat surgeries or blame other conditions for their failures.
I am sorry if I was not clear.