Pseudotumor Cerebri
Pseudo – What?!! Yes, this is a true medical condition. Why do I want to talk about this? I want to showcase to the world how they think. Who is they? Those of you who actually are diagnosed with this condition, already know who they are…the standard medical community. Basically, these patients have a range of head symptoms mostly headaches; MRI is negative; when they do a lumbar puncture to look for protein, infections, etc., they find that the opening pressure is higher than normal.
In the closed tissue space of the cranium, there is just enough room from brain, blood supply going in and out and cerebrospinal fluid which cushions the brain. Anything extra will increase pressure so that when you stick a needle in the lower back to collect CSF, it pops the meter higher. So, if an MRI has not been done, we get concerned about a tumor. If there is no tumor, then why is the opening pressure so high? Hence, the name, pseudotumor.
A specialist from a “Big Name” hospital in Los Angeles, asked me what I thought. He had a patient that he diagnosed with this condition. He is a little poindexter in his ivory tower all these years, looks kinda like an older Ric Moranis, no offense to Mr. Moranis. At first, I was gullible enough to believe that he was curious and really wanted to know what we would do. Now I realize that he asked so that he could quietly, smugly, mock my distorted thinking. I will leave it up to you, the public to decide who is more distorted.
If the opening pressure for CSF is high and if there isn’t a tumor pushing that fluid out the needle, then there must be something. What? Well, our Poindexter, they, of the ivory tower stop the thought process right there and label it “idiopathic” meaning cause unknown (some meds can cause this, but not lots, not common). Unknown cause. Therefore unknown treatment. Now, get this. This increased CSF pressure causes headache. So, the little guy wants to have his patient come to him once a month so he can stick a needle in her back and take out CSF. Band-Aid.
Here is my rationale…If CSF pressure is high, maybe there is too much CSF. Why would there be too much CSF? You are either overproducing or under resorbing. In the osteopathic philosophy, mechanical strain acquired from trauma or residual birth process could affect circulation, drainage (of blood, lymph, CSF) and resorption. MDs think that the cranium is static. We, traditional DOs, believe that it is dynamic, that there is a mechanism for motion and drainage. It is the natural state. When there is trauma or strain, the cranium does, sputter and stagnate – then what happens? Pressure builds up -Tah Dah! Crank that mechanism up, reduce and resolve the strains and bingo the system stirs and fluids drain and pressure decreases.
Our little poindexter decides that it is impractical, not to mention that the parents might not like it. What does he do? Nothing. So the patient is left on her own to suffer. That is how they think! They know it all. So if they can’t do anything, no one else has the answer either. Scary. I feel sorry for all you patients out there diagnosed with Pseudotumor Cerebri. Everybody else ? Be scared. Be wary.
Explore posts in the same categories: Chronic PainTags: cerebrospinal fluid, pressure headache, psudotumor cerebri
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Doctor Hoang's Straight Talk 
April 9, 2012 at 11:48 am
I have a doctor just like the one you are talking about. And now where am I? The same place I was 4 years ago, no one to help. Three months before the diagnosis a Neurologists here in S.C. told me I was seeking pills, having rebound headaches from all the Tylenol and Ibuprofen I had been taking, and the statement that stuck in my head the loudest … it’s all psychosomatic due to stress levels. My optometrist caught it during an annual exam, swollen optic nerves.
I have had 6 spinal taps, two resulting in spinal headaches, and now things are looking even worse due to the smug self-righteous doctor I have. I have been in pain management for 3 years now and on some powerful medications but with no real relief. The condition is now causing Chiari Malformation.
Thank you for shedding light on this disorder for people who look at us like we are looking for attention, seeking pills, or its all in our heads!
April 9, 2012 at 5:06 pm
i’m so sorry for you Teri. They blame you…as a doctor shopper, drug seeking, when you are seeking…answers. Prior to your message here, there have been multiple searches by other people hitting on this terrible medical problem. I imagine it must be frightening. Chiari is very…concerning. I will privately email you offline to give you a little guidance.
December 30, 2012 at 1:27 pm
Thank you so much. Sorry took so long to reply I lost the blog post and have been having other medical issues. I hope you are still willing to provide some guidance. Again, thank you!
April 10, 2012 at 6:19 pm
Hi. It was suggested to me by a doctor that I have my new neurologist consider pseudotumor cerebri when getting my 2nd opinion for stabbing head pain/diagnosed post concussive syndrome (going in 2days). I hit my head at work 7 months ago, had CT 3 wks later indicating normal but possible cerebellar ectopia. MRI normal (borderline Chiari malformation is what a neurosurgeon told me, he did NOT diagnose me as having it). Given antidepressants then BP lowering meds, then back to antidepressants (nothing for pain). Hit my head several more times at work (one really good one to the jaw) after working through headache after stabbing headache at work (and all the other post concussive symptoms) I stopped working 6 weeks ago to rest/heal. I’ve been thinking that getting an LP to check pressure may take away the pressure/pain in my head. I just want relief (I used to want to drill a hole in my temple-it’s not that harsh anymore- and at one point had pains described by people with occipital neuralgia).
I’m curious is you can give me more details of what your statement “Crank that mechanism up, reduce and resolve the strains and bingo the system stirs and fluids drain and pressure decreases.” means. I’ve been doing nothing but reading, the occasional DVD, and started seeing a corrective exercise trainer to get my muscles to work & get blood flowing (very stiff, my neck is so so sore most of the time).
I’ve been having good days lately, since starting the training. I’m curious what else drains the excess CSF because if an LP can potentially worsen a borderline chiari I don’t want to make anything worse.
Thank you
April 10, 2012 at 6:50 pm
“cranking up the mechanism” means doing cranial osteopathic manipulative treatments to resolve the traumatic injuries to to bones, joints and supportive connective tissue within the brain. blood flow is actively pumped into the skull by the heart. it is generally believed (in MD and DO medicine) that blood flow drainage out of the skull is passive. we more nuttier, out of the box thinkers, who do cranial osteopathic work, know differently. we undo the trauma, and the intrinsic mechanism, picks up on it own, it is no longer strained, it is free to…drain. find a cranial osteopathic physician at http://www.cranialacademy.com near you and call and make sure they are comfortable handling difficult cases like yours; usually greater than 10 years clinical experience (after graduation) will a physician be good enough for you to feel a difference on the first visit (your head should feel lighter, less congested, your eyeballs less buggy, etc.). good luck to you.
May 21, 2012 at 6:27 pm
Thank you for writing about this ‘rare’ illness. I have Pseudotumor Cerebri/Intracranial Hypertension for 12 years now. After a year of medical management (diamox, lasix, topamax, steroids, etc which were horrible & did nothing to help the pressure in my head), I was told that I needed a shunt. I thought *finally*! This will be the “cure”! Boy was I misinformed!!! I have had FIFTY-EIGHT surgeries since January 2001!!! In that time they have tried multiple shunts & configurations of shunts (including an omaya reservior that I drained myself, which worked GREAT until I got my 1st shunt infection–which has lead to many, many more shunt infections) I was also diagnosed with Arnold Chiari Malformation. Drs have never been able to determine if I had it all along. (The chicken or the egg thing, so to speak.) In my case, if anything can go wrong, it does. My friends & drs call my “Murphy” (after Murphy’s Law) lol. I’m also fairly rare in that I’ve never had Papilledema. Ever! I know from having in EVDs (external ventricular drains) multiple times that I produce a TON of spinal fluid!!! My symptoms are severe headaches, dizziness, pressure in my ears/head, nausea & my most recent issue…problems with my eye muscle movements. (I look up and my right eye goes off to the side instead. Also when looking up, my eyes bounce back & forth (sorta like nystagmus, but more pronounced). The neuro-optho dr says it’s a “brain surgery issue”; the brain surgeon says that it’s an opthomology issue. Meanwhile, I’m in the middle, in pain & having to close my right eye to avoid double vision.We are also at the point where I can no longer have LPs. The radiologist last time told me that he’d bet money on the fact that I probably have adhesive arachnoiditis. Meaning that the nerve roots in my back are blocking the needle & no fluid will come out. After my last LP, where they tried for 45 minutes to tap me, only to keep hitting nerves and making my legs jump off of the table (and this was under floroscopy!), they gave up and said that I would probably not ever be able to have taps again. The only way to test for this that I’m aware of is an MRI, and after my last MRI, we discovered that I’m suddenly allergic to contrast dye (after never having an issue w/ the 10 or so previous MRIs I’d had.) Like I said….MURPHY! All I’m ever told is “lose weight & this will go away”. This is never mentioned until the dr runs out of options to “cure” me. First of all, I was not overweight when I was diagnosed. I used to be a runner. Now, I get out of breath going up a flight of stairs. I never had any other health problems. I never even got chickenpox as a kid! Now I have chronic pain, am on a bunch of medications, I’m exhausted all the time & in pain more than I’m not. It’s just good to finally see someone in the medical community writing about this illness that has seemingly taken over my life.
May 21, 2012 at 11:54 pm
My doctors is amazing, he refuses to give me a ‘band aid’ treatment without exploring every alternative first including weight loss, medication and even types of food and medication that result in increased CSF. After starting diamox (and after losing 30kg) within 2 weeks of starting the medication the swelling of my optic nerves drastically reduced AND the blind spots in my eyes that had developed overtime due to the condition had surprisingly almost disappeared. Although I am by no means out of the dark, but life is much more tolerable and painless than before. So I therefore completely agree that there is no possible way that the cranium could be static. And I refuse to resort to such drastic measures such as shunts and LP’s unless there is an absolute need for it.
June 6, 2012 at 11:48 am
[…] By Doctor Hoang “Pseudo – What?!! Yes, this is a true medical condition. Why do I want to talk about this? I want to showcase to the world how they think. Who is they? Those of you who actually are diagnosed with this condition, already know who they are…the standard medical community. Basically, these patients have a range of head symptoms mostly headaches; MRI is negative; when they do a lumbar puncture to look for protein, infections, etc., they find that the opening pressure is higher than normal. In the closed tissue space of the cranium, there is just enough room from brain, blood supply going in and out and cerebrospinal fluid which cushions the brain. Anything extra will increase pressure so that when you stick a needle in the lower back to collect CSF, it pops the meter higher. So, if an MRI has not been done, we get concerned about a tumor. If there is no tumor, then why is the opening pressure so high? Hence, the name, pseudotumor. A specialist from a “Big Name” hospital in Los Angeles, asked me what I thought. He had a patient that he diagnosed with this condition. He is a little poindexter in his ivory tower all these years, looks kinda like an older Ric Moranis, no offense to Mr. Moranis. At first, I was gullible enough to believe that he was curious and really wanted to know what we would do. Now I realize that he asked so that he could quietly, smugly, mock my distorted thinking. I will leave it up to you, the public to decide who is more distorted. If the opening pressure for CSF is high and if there isn’t a tumor pushing that fluid out the needle, then there must be something. What? Well, our Poindexter, they, of the ivory tower stop the thought process right there and label it “idiopathic” meaning cause unknown (some meds can cause this, but not lots, not common). Unknown cause. Therefore unknown treatment. Now, get this. This increased CSF pressure causes headache. So, the little guy wants to have his patient come to him once a month so he can stick a needle in her back and take out CSF. Band-Aid. Here is my rationale…If CSF pressure is high, maybe there is too much CSF. Why would there be too much CSF? You are either overproducing or under resorbing. In the osteopathic philosophy, mechanical strain acquired from trauma or residual birth process could affect circulation, drainage (of blood, lymph, CSF) and resorption. MDs think that the cranium is static. We, traditional DOs, believe that it is dynamic, that there is a mechanism for motion and drainage. It is the natural state. When there is trauma or strain, the cranium does, sputter and stagnate – then what happens? Pressure builds up -Tah Dah! Crank that mechanism up, reduce and resolve the strains and bingo the system stirs and fluids drain and pressure decreases. Our little poindexter decides that it is impractical, not to mention that the parents might not like it. What does he do? Nothing. So the patient is left on her own to suffer. That is how they think! They know it all. So if they can’t do anything, no one else has the answer either. Scary. I feel sorry for all you patients out there diagnosed with Pseudotumor Cerebri. Everybody else ? Be scared. Be wary.” I really hope that more people in the medical field start thinking like this and I don’t have to live everyday in pain and fear of losing my eyesight, balance or having what we call in my house a “bad head day”. My doctors don’t even consider using lumbar punctures as an option or other pain medication options for some reason. They feel the medication they’ve prescribed me is enough, until I lose enough weight to send me in remission, even though it seems to only make me pee every half hour and doesn’t do much for my IIH. Until then, chin up and carry on. Share this: Pin ItShare on TumblrEmailLike this:LikeBe the first to like this post. […]
November 5, 2012 at 6:22 pm
My name is Melanie and I am a 28 year old female with the condition and I feel like I am not getting the proper care that I need because I have no insurance.
November 7, 2012 at 7:48 am
hi melanie, i hate to say it but not getting the “proper care” for your headaches and head pressures, i don’t think has so much to do with money/insurance primarily…even if you had all the money/insurance in the world, you would want to seek the “best care, best specialists.” the point with this blog and my insider understanding of the conventional medical system (CMS) is that they, the doctors in the CMS follow each others recipe in the same cookbook and that once there is a label, all logic and attempt at trying to understand why a persons head feels like it is going to explode and the excruciating and debilitating headache that comes with is just written off with a diagnosis. just think of all those poor rich people out there who think that they are buying the best care in the world and they are still offered the same pills or a needle in the back monthly to drain the CSF/brain fluid that cushions and suspends the brain within the skull that every other person with insurance has been offered; plus, they flew in on their private jet and paid 10x as much to get the same recipe from the same cookbook; they have been bamboozled and deceived that the “world renown specialist in psuedotumor cerebri” at so-and-so institute has an answer, when they really just paid for his/her time to tell them pretty much, “we don’t have answers for you.” to start your search for help, please read my comment to coriepup.
April 30, 2013 at 2:07 am
Old blog, old post, but here goes! Going to keep this short as possible. I had the horrible headaches for almost 2 years. Was eating 8,000mg of Tylenol a day everyday for 2 years and then one day I woke up with a funny blind spot in my right eye, the short version…via my eye doctor (who found my swollen optic nerve, the blind spot was a floater, old blood from broken vessels behind my eye) I was referred to a Neurologist. Had an LP and found out it was PTC and so the drug gambit began. It seemed as though I had horrific side effects from everything!!!! Luckily my Neurologist is amazing, try’s all avenues, lets me decide what I want to do with my body, gives me all my options and suggests what’s best. He’s never given up on me. The very first thing he told me was to lose weight. I was diagnosed at 28. As a female weighing 260 lbs and 5’9 I knew this was going to be tough, I already felt like crap, how the hell was I going to exercise?!?! As all of us who suffer from PTC know it takes a lot of trial and error with these meds, as well as time! I am now 32 and have been on Zonisimide for almost 2 years as well as lost 45 lbs. I am NOT 100% better, but I would say I’m about 70% closer to normal and I will take that any day! If you haven’t tried the Zonisimide I say you should research it, talk to your Neuro about it and try it. It’s biggest side effect however is….weight loss! I’m open to any and all questions as I certainly have lots more to add…experiences, opinions, suggestions etc! I’m an open book! I do have ONE question. I’ve never flown, never been afraid to either…until now. Has anyone with PTC ever flown? My Neuro says I’ll be fine as long as my optic nerve is not swollen and I have no bulging of the eyes, but still I wonder. Hoping someone see’s this…soon!
April 30, 2013 at 2:29 am
the other thinkg i would like to to consider is…that you have had old, chronic, maybe multiple head injuries, slip and falls in the distant past; you probably did not think was relevant or even contributory…
July 4, 2014 at 2:44 pm
Thanks so much for your interesting opinions on this disease. I’ve had migraines my whole life but after two pregnancies both w severe preeclampsia, the last time w cerebral edema my headaches became daily and severe complicated by memory loss, mood swings (normally super calm) and vision problems. I’m maybe 20 pounds overweight (just had a baby) and every Dr I saw kept telling me my migraines were just worse. Finally my new neurologist referred me to pain management ans he immediately suggested I had raised interncranial pressure. Did an lp, results were 320mm and they are now also checking me for sinous venous thrombosis and lupus (strong Family history). Honestly if any of my drs had bothered to listen for two minutes they might of noticed I wasn’t just having a migraine and looking for drugs! I don’t know when not listening to your patients (I guess about the time they started making a bunch of money a 100 year’s ago) became so common but it’s unfortunate. Thanks for shedding some light for those of us w this illness.
July 5, 2014 at 2:07 am
if you have had migraines, “all your life” you need to trace back to the first time you had an episode and did not know what to make of it. Usually helps when you first given the diagnosis of “migraine.” then trace that moment back 1 to 2 years, that was the initial blunt force head trauma or the final straw in a series of mild head bumps…then over the course of several months to a year, you start to get “migraines.” believe it or not, 20lbs is not whole lot of extra weight, it is more like 50 lbs that can make a big difference in pseudotumor…but it is a start that is safe to try and see…i suspect it does contribute…i would even venture to guess that you have fallen flat on your face at a young age or even taken a ball to dead center between your eyeballs…the cause of your troubles now can be traced all the way back then…