The ONLY definitive way to diagnose pseudotumor cerebri
I first wrote this in 2008. Since people are still commenting on this SharePost again, it's evident that doctors are still telling people that they can diagnose or rule out pseudotumor cerebri by looking in the eyes for papilledema.
I just read a post in our forum, and now I'm really steamed. I mean royally ticked off! Migraine disease can leave us in a living hell. It's hard enough when our doctors know what they're talking about and give us the best care they possibly can, but it's way beyond that when our doctors are idiots.
One of our forum members posted this afternoon that she "went to a neuro, he looked at my eyes for pressure and saw none and also had an MRI. With these two things, he ruled out the pseudotumor." What utter nonsense!!
Pseudotumor cerebri (PTC) (aka idiopathic intracranial hypertension) is a condition in which the body produces too much cerebral spinal fluid or doesn't absorb it well, resulting in increased cerebrospinal fluid pressure. PTC can trigger Migraines it can also produce headaches that can be daily and not relieved by medications. If untreated it can be so serious as to eventually cause blindness. I think you get the idea by now that it's nothing to mess with! Think about it like this. Imagine your skull. Now imagine your brain within that skull. The cerebrospinal fluid surrounds the brain. Now, the skull isn't exactly elastic. There's a limited amount of space in there. So, what happens when there's more fluid than should be in that limited amount of space? The brain is under more pressure than it should be. The optic nerves are under more pressure than they should be.
You may be wondering, "What on earth is Teri ranting and raving about now?" I'll tell you. Think back to what our forum member said. Her doctor "looked at her eyes for pressure" and ran an MRI. Well, guess what folks? Those tests do NOT rule out PTC. Nope. No way.
I want to slap that doctor! Hey, idiot doctor, go back to medical school or go work at a fast food restaurant where the worst damage you could do would be to give someone food poisoning. Pressure in the eye is not even the second best way to check for PTC. The second best way is to check the optic disc for papilledema, swelling of the optic disc. One of the conditions that can indicate is PTC, but not everyone with PTC has papilledema. Nor does PTC necessarily show up on an MRI. According to Dr. William B. Young of the Jefferson Headache Center and Dr. Fred Sheftell of the New England Center for Headache, past president of the American Headache Society, and past chairman of the World Headache Alliance, there is ONE test and one test only that can definitively diagnose or rule out PTC. That test is a lumbar puncture, aka spinal tap. When the lumbar puncture is performed, the opening cerebrospinal fluid pressure is measured. That is the definitive diagnostic test. If I know this, it really stinks didn't this doctor know it?
Now our forum member's doctor didn't do a lumbar puncture. So, I ask you... Did he rule out pseudotumor? Nope. Fool. He told our member that he did, but he didn't. Nobody knows if she has PTC or not. Nobody knows if perhaps that's why preventive medications aren't working for her, why she's still living in Migraine hell.
Those of you who know me know that I believe in speaking quite clearly, even if it does seem a bit blunt. That way, there's no room for misunderstanding what I'm saying. So let me just say this about that doctor. His sorry butt needs to be fired. Period. Our doctors are not ultimately responsible for our health; we are. Do they pay us to go to our appointments? I think not. We pay them. They work for us. We hire them; we can fire them.
OK. I've griped enough. I'll step down from this soapbox now. I'll leave you with this, an article to read... The Patient As Consumer.
Medical review by John Claude Krusz, PhD, MD.