November 20, 2006 -- Over the years I have heard from many patients frustrated at their experiences with neurologists.  I have heard tales of people being told that "Chiari is nothing to worry about", "you were born that way", "there's nothing you can do about it anyway", and the ever popular, "your symptoms aren't real, you're depressed and crazy".
     This is not to pick on neurologists, or malign or disparage their profession.  I am quite confident there are many, many neurologists who are kind, dedicated, compassionate, and actually know what to do with Chiari.  However, it is hard to deny that in general, many neurologists take a different view of Chiari than do neurosurgeons.
     This can be for a couple of reasons.  First and foremost, Chiari is a structural problem for which the only real current treatment option is surgery.  Since a neurologist is not going to perform surgery, they naturally have a different view of it than a surgeon would.
     Secondly, neurologists (unless they are working closely with a neurosurgeon which is the case at some places that specialize in Chiari) don't necessarily have direct clinical knowledge of patient outcomes associated with surgery.  If they refer someone to a neurosurgeon, they may never see that patient again.  If they treat the patient medically, obviously they never will know if surgery would have helped.  Because of this, they don't develop a direct knowledge of which types of cases are likely to respond to surgery and which aren't. Rather, they tend to rely on the standard radiographic definition of Chiari (>3mm-5mm on MRI), when we all know that there are people with smaller herniations who have severe symptoms.
     Finally, most of the research being done on Chiari is being performed by neurosurgeons.  Consequently, the associated medical publications relating to Chiari tend to be in the neurosurgical journals, which neurologists may not follow.  Thus, they may not be as familiar with the latest research and thinking on the subject.
     This is why, even though I am sure most neurologists are wonderful doctors and people, that when someone tells me they have seen a neurologist and aren't satisfied with their care, I advise them to consider seeing a neurosurgeon instead.  While hopefully the day will come when surgery is not the main option in treating Chiari, until that day arrives neurosurgeons will likely be the best place to go for patients.
     This whole thing really hit home with me a couple of weeks ago.  I was graciously invited by one of our scientific advisors, a neurosurgeon, to attend a talk he was giving on Chiari.  When I arrived I ended up sitting next to a neurologist.  Before he knew who I was he made a comment like, what are we here for, Chiari?  Is that that little brain thing related to chronic fatigue?  I never know what to do with those.  His tone and body language said it all.  He didn't take Chiari seriously unless there was a major herniation with crippling symptoms.  I introduced myself, told him what I do, and asked him to keep an open mind during the talk.
     The neurosurgeon gave a great talk, combining a concise overview of the Chiari literature with his own experiences.  When it was over, both the surgeon and the neurologist ended up at my table and began conversing.  At the end of the meeting, it was clear the neurologist had changed his mind and told the surgeon he would be sending him Chiari patients (he estimated 6-12 a year) for evaluation.
     With thousands of neurologists in the US alone, the task may seem monumental, but on this day at least one more was educated on Chiari.  And until we can raise our profile maybe that's the key, just take it one doctor at a time.

-- Rick Labuda

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