Chiari Online Support Group

Doctors and Chiari


#1

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!

[quote=“ModSupport, post:5, topic:6823, full:true”]
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.

TJ
[/quote]


#2

You may want to take a look at this fact sheet:

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Chiari-Malformation-Fact-Sheet#6

azurelle


#3

Azurelle,
Wonderful information and you are so awesome to share it with our Members.


#4

I appreciate your point of view to the extent that I’ve sought three neurosurgery opinions. One told me call me when your symptoms get worse. One said your not surgical, and the third said he’d have me on the operating table in two weeks.

I’m so afraid that I’m just searching for what I want to hear, but not sure what that is. So I keep searching.

I finally thought we were going to reach a diagnosis after my last MRI showed a Chiari growth of 15 mm in the last year. But that only confused the neurosurgeons more. One wanted to run more tests and another wanted to operate. I went with more tests, because that seemed reasonable.

After having the additional spinal MRIs though the neurosurgeon felt I also needed to rule out hydrocephalus - even though the MRIs haven’t shown any sign of hydrocephalus and my neuro-ophthalmologist distinctly told me I showed no sign of increased intracranial pressure.

At this point I don’t know what the answer is, but I know no one else seems to either. Makes me wonder if I may be better off just going to one of the for profit surgery sites and rolling the dice.


#5

Wow! Thank you for this post. I saw a doctor who thinks I have vestibular nerve damage. Every doctor I see says something different. There is a doctor that has explained that Chiari can be caused by nerve and or neck issues and in that case doesn’t recommend surgery, but neck treatment unless pressure is high in the back of the brain. I am also aware that the Cine is not a proven test. I also think that some of us have acute phases and dormant phases. My attacks come on about 2 times a week, subside sometimes within minutes. If they did a Cine study in those few minutes they would probably see a difference. Otherwise they would not. I have also read that standing MRIs are much more accurate for determining Chiari. I read of cases where the difference was significant for some. For example one patient had a small herniation, but when they did the standing MRI, their brain herniation was significant meaning there is a position factor. Also, the true Chiari brain is different. The pineal gland, back of the brain and other parts of the brain are actually shaped differently. This means that the brain is structurally different.


#6

Hey Divine,
A bit like you I’ve seen numerous dr’s and like you “…Every doctor I see says something different…” to the point that I’ve basically given up on them having any great answers/remedies. The surgeon’s view is 'Well, I operated, I fixed…" but if this is fixed then I can think of another word starting with ‘F’ that better explains my situation.
As I’ve said to many members here before… “…some dr’s make out they know it all, they don’t…” many medical practitioners are less than willing to say they don’t know or are unsure so often they write things off as being psychosomatic. No two brains are wired exactly the same so to be saying that symptom ‘A’ + symptom ‘B’= Diagnosis ‘C’ is impossible when it comes to the brain. And due to the fact that symptoms can and do fluctuate, trying to get a clear diagnosis can often be difficult.
Just know you are not the only one on this rollercoaster.

Merl from the Moderator Support Team