Hi - I saw the below on another older post and found it very interesting and thought provoking so wanted to make a separate post for this as I’ve often had some similar thoughts. I never knew that this was a “for-profit” surgery (not sure what else to call it) made popular by Chriari centers though I am aware of the disgraced NY surgeon.
What often goes through my mind when I read posts that say something along the line of “I finally saw a surgeon who gets it” or “find a surgeon who knows chiari” is that if one looks hard and long enough they can find a doctor who tells them what they want to hear. If they believe their symptoms are chiari related then they can find a doctor who will agree and will perform the surgery which in the end won’t work because chiari wasn’t the problem. Is the reason for the low success rate because the wrong issue is being treated? I would love to see a “doctor who gets it” but not because I want the surgery, only because I want to know if this is truly the cause of my problems or not.
I’m a member of a couple different dizziness/vertigo/vestibular migraine groups and the people there have the exact same symptoms as the those that write here. What is it that makes a good doctor decide that chiari is the problem or not? I’ve been diagnosed with vestibular migraine by more than one doctor and my symptoms easily fit the bill but my symptoms just as easily fit the bill of chiari (I have the additional problem of dysphagia which isn’t a migraine symptom but is of Chiari), The idea of Chiari has been dismissed or ignored by my doctors.
As far as the Cine MRI - is that not a valid test? I wasn’t aware of this, I thought Chiari could be a sure thing based on the results of this.
I must say I don’t agree that the surgery is simple and quick - being in the OR for 6 hours sounds like anything but and the recovery sounds painfully long.
Excellent about the headache connection!
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The problem is that for many if not most, there is not a clear connection between the Chiari and the symptoms. For every person walking around with symptoms the are 4 with as large or larger chiari walking around with no symptoms.
The surgery was popularized by Chiari Centers, headache centers, and a few out and out crooks. Because the condition itself is NOT unusual, the chances of a headache patient having achiari are pretty good. Association is NOT causation. Some of the less scrupulous docs even started using a unproven test CineMRI) developed to measure cardiac flows to sell the surgery.
In the world of neurosurgery, chiari surgery is as the appendectomy is to general surgery. Simple quick and profitable. It was actually a surgery looking for a disease. Originally it was going to be a cure for Fibromyalgia.
That all being said there are times where the surgery is an absolute necessity. It’s usually a pediatric issue but certainly occurs in adults. Other than the headache quacks and a disgraced NY surgeon (once very popular here) fewer than 20% are surgical.
Incidentally as one of the most common neuro conditions Neurologists and Neurosurgeons are familiar with it. Because it is so rarely the problem, some tend to dismiss it too quickly a second opinion is always in order and tie breaker if it’s a split decision.