Hi everyone, I was hoping someone could offer me some advice. I have had problems with my head and neck for numerous years. Recently when looking through old testing results I noticed there was an MRI done of my neck and in the results it stated I was positive for Chiari Malformation. No one has ever mentioned it to me, not years ago when I had the MRI, and not sense.
After seeing the result I tried to look at the symptoms and saw many similarities between myself and others. When I had the MRI done , following a car accident I was 40. Would it make sense that I would show Chiari Malformation at that age, and if so why wouldn’t a doc mention it. My main symptoms have always been pain/pressure at the back of my neck/base of the skull, lightheaded, balance issues, pulsing in ear, ringing in ears, and multiple problems with my eyes including blurred vision, double vision and fatigued eyes that are bothered by motion, and pressure in my head when lifting. The symptoms are sometimes worse than other times, but they never go away.
I am not sure what direction to take from here, or should I just assume that it was a false positive.
I am not sure what direction you should take from here either but I will tell you a bit of my journey
1st MRI read by a small city radiologist did not mention Chiari. No one else looked at the images
2nd MRI also read by a small city radiologist reported a small chiari present with no other significant findings but not changed from the first Chiari presentation in the first MRI. No doctor ever mentioned the Chiari finding until I found it myself when I read my medical chart.
The images were also seen by a neuro-optometrist as I was having significant vision disturbances. He read it at 10mm in length but dismissed it from being the cause of my many symptoms. I did not know about this. Many doctors, neurologists, and other specialists did not review the images, only the findings as written by the radiologist. Because the radiologist did not say such things as "further investigation warranted" or "Chiari presentation of concern giving patient's symptoms", all the physicians and specialists ignored the Chiari presentation. There are a number of reasons why this happens.
Having my MRI read by a neurosurgeon made the world of difference. He listened to my symptoms, looked at the reams of medical testing saying what I did not have, and looked at the sagittal AND the horizontal view before making a decision on if surgery was a good option for me. Surgery was not a cure-all but at least it got me out of bed and able to run a household. There are other non-standard physical/vision therapy treatments that can address balance, vision problems, pain, and others.
Good luck in charting your course.
Hi Taylor, Many doctors do not have the training or otherwise the experience to know the problems posed by even a short Chiari situation. Sometimes you would not be aware of symptoms until something dramatic such as a car accident causes something to change and you have an onset of your symptoms. I would really suggest you take your old MRI’s with you and see a neurosurgeon. I have found that neurosurgeons seem to know more about Chiari than neurologists. See what treatment plan he suggests and take it from there. Often just conservative treatment will keep you going for a long while so do not just jump into surgery until it becomes vital. All the best for you.
Thanks Flerrie, I think it sounds like a good idea to see a neurosurgeon,
but it almost seems awkward making an appointment with such an old MRI.
Another problem is that I am not going to be able to have another MRI
because I have a pacemaker. Have you ever heard of having a false
positive, where the test shows one thing but it isn’t accurate, or do you
think that since it showed it once, that it is most likely there. I have
had so many symptoms for so many years, and no one has even hinted at
Chiari Malformation, including the person who ordered the MRI all those
years ago.
There is a huge breakdown in research ESPECIALLY that coming from Neuro Surgeons who have little training in the association of symptoms (not all “common symptoms” are equal they break down into much smaller pieces which almost never are related to a Type 1 Chiari. A neuro surgeon has little to no training in this area.
Imaging is a very small portion of diagnoses of Chiari one unless the imaging occurs in response to symptoms.
An MRI is rarely a “gold Standard” when it comes to Chiari 1 (Thus the reason it appears in old MRIs but wasn’t commented on)
The reason is a bit complicated but I’ll try to explain. There are TWO factors that make an MRI study meaningful or not:
- Sensitivity
- Specificity
Sensitivity and Specificty is based on these variables:
- true positive (TP): an imaging test is positive and the patient has the disease/condition
- false positive (FP): an imaging test is positive and the patient does not have the disease/condition
- true negative (TN): an imaging test is negative and the patient does not have the disease/condition
- false negative (FN): an imaging test is negative and the patient has the disease/condition
On a first pass, we don’t assume some relationship between the test and the disease/condition, but we hope there will be some relationship between the test and the disease/condition, because otherwise the test would be worthless.
Once you have the variables they play this way
Sensitivity
For a given test and disease/condition, its sensitivity is how well it can be positive among all those with the condition. Therefore:
sensitivity = TP / (TP + FN)
true positives / (all those with the disease)
Specificity
For a given test and disease/condition, its specificity is how well it can distinguish those with disease from those without. The test must not just fail to pick up a segment of the population (that might be poor sensitivity), it must distinguish those without the disease… the true negatives (TNs). Therefore:
specificity = TN / (TN + FP)
true negatives / (all those without the disease)
Those are pretty easy numbers to come up with. Specificity is high whether it is an academic center or Surgery group. Those numbers ar in excess of 96% just about where you would want them.
The problem is sensitivity. In numerous studies where neurology and surgery are working together, the sensitivity is closer to 50%. These are cases where the study is done in response to symptoms. Or in short the MRI is wrong as often as its right. Consequently an ethical radiologist may NOTE the abnormality but offer little opinion beyond that. Its really up to the Doc who ordered the study to determine whether it is meaningful or not.
Now this is where it gets REALLY muddy. There are surgical groups who are claiming sensitivity as high as 96%. One in particular in New York was claiming numbers higher than that. Fortunately the Director of that program “retired” and his star surgeon resigned after numerous lawsuits and “investigations”
Now why surgeons claim that kind of sensitivity when they lack the training and/or expertise is anyone’s guess. Not to mention number higher than 95.6% are actually mathematically impossible
The bottom line is that Chiari Malformation 1 is (although it usually is not) a serious matter when ALL the stars line up but there are very FEW simple answers. Whether you hold to the old numbers of a few cases per thousand or the newer numbers where it is more prevalent it is NOT an unusual thing for an active neurologist to see. It is unusual to have a really clear diagnoses. Multiple opinions including a LARGE academic center before proceeding with surgical options are a must.
BTW just a small piece of trivia. Following “knee scopes” the largest placebo effect of any surgery (and most exceed 35%) is anything where they drill a hole in your head. Not that if symptoms are bad enough, there aren’t times where even a placebo effect is helpful other than the fact Placebo improvement rarely lasts more than a few years and another surgery is required.
@TaylorM an old MRI should NOT be a problem as most of the findings can be confirmed with improved Ultra-sound and other methods even angiogram. But you are correct false positive are a problem, they may see the thing but because of the low sensitivity of the MRI, it may not be the cause of the symptoms. Good luck But please get multiple opinions and not seek a quick answer and solution (as we all would like to have) that you may likley get from a surgeon.
TJ
Who would you go to for answers? Family doc, neurologist, neurosurgeon?
Thanks for all the info.
My first MRI was 32 years ago. It is the most trustworthy way to diagnose Chairi. My normal scan and mielo gram only suggested something was wrong, but could not show what. MRI with your symptoms and history is enough for an informed neurosurgeon.
A combination. Just keep in mind because something is present, it isn’t the reason that what the whole “sensitivity” thing is about
I’m not sure I understand what you mean by the sensitivity thing, but I
will reread your initial post and try and make sense of it.
sensitivity is simnply the relationship between the “symptoms” and how many have the condition. (or the reverse) With chiari LOTS of folks have the abnormal MRI but no symptoms. The assumption is if the abnormality was directly related to the symptoms the sensitivity would be high. For Chiari 1, its not. so a diagnoses is based on other factors as well.
For example: headaches. While there are multiple things to look at, those that are condsidered “migraine” (and there is a long list of things that make a headache migraine) are not considered. Nor are headaches that the acute phase last longer than hour.
TJ
Who would you go to for answers? Family doc, neurologist, neurosurgeon?
Thanks for all the info.
All would have good input. I would consider their input pretty much in the order you listed them.
One thing I left out is that there ARE ways to increase the reliabilty/sensibility of imaging. It varies based on the practice but there are some basics. For example one of the Surgeons who contributes here if I am remembering correctly looks for two other specifics in MRIs: tonsil length/herniation>5mm AND the presence of a syrinx. These factors can cause a fair amount of confusion as they are not always standard. But that is why the 5mm “rule” exists. Its really a questn of wht shows up on the MRIs of the most people with “the condition”
Taylor, you may want to recheck the no MRI because of the pacemaker. My Mom needed to have one and they said it required a cardiologist to be present but that an MRI could be done. Luckily she did not need it after all. But just fyi