Breast Cancer Symptom Pain

so the first thingi want to tell you is that today's talk is alittle different, perhaps, than the talk that's usuallygiven here in the health library in the sensethat my goal is not just to educate you, thougheducation you will receive. my goal is really to enlist you. i hope that people herewatching and people who are watchingonline will come to see that reallywhat i am here to do

is to call you to service,because the people who are suffering withthe problem that we're going to be discussingtoday are people who are often misdiagnosed. i'm convinced thatsomebody here in this room knows somebody who is leaking. and when i say"leaking," i'm talking about a cerebralspinal fluid leak. and what's clearto me is that most

of the people who are leaking,who have cerebral spinal fluid leaks, don't knowthat they're leaking, and therefore, they don'tknow the right kind of doctor to go to. and so, as i'm goingthrough my talk and you start to hear aboutsymptoms like tachycardia-- fast heart rate-- or fatiguethat gets worse when someone's upright, or neck painor head pain that gets worse when someone'supright-- if you don't have

those kinds ofsymptoms yourself, i would ask you to thinkabout the other people who you know who have thingsthat have been called, maybe "pots," or maybechronic fatigue syndrome, or maybe chronicdaily migraines. and think about sendingthem a link to this video so that they can seeif the things that we talk about here today are thingslike what they're experiencing. so i'm asking you notjust to become educated

about what you'reinterested in, but think about how you canparticipate in the work that we're doing here to findthe people who are leaking so we can help those people. and this starts with a storythat comes from my own heart. this is my daughter, alex. and alex is a specialgirl, and she's a special needs child of mine. maybe three yearsago she started

having unusual episodeswhere she would become non-communicative, andshe would cry and express really great distress. and it would last for a week. she wouldn't eat, and shehad urinary retention. and they would recur andrecur, and we were spending a lot of time in the hospital. in fact, the lasttime i was here in this library giving atalk about neuropathic pain,

when i look at that videoi think i look tired and i look fatigued. and i think about wherei was at that point. and we're doing much better now. and one of the things thathappened during her evaluation is she had a spinaltap where someone put a needle in her spinalfluid to look at it. and we noticed at some pointthat there was a period of time when she was ok lying flat.

and then she would get uprightand she would start screaming. we don't think thatall of what she had was a spinal fluid leak, but itseems that part of what she had was a spinal fluid leak. and she got what's calledan epidural blood patch and then did much better. and that got me readingabout spinal fluid leaks, and reading not alittle bit, but a lot, and really thinking aboutwhere were these patients who

had spinal fluid leaks? where might theybe misdiagnosed? where might they be hidinghere around stanford? and that took us in someinteresting directions, and i'm going to sharethat with you today. because after i did all ofthat reading-- of course, now we have cerebralspinal fluid leaks in the news with steve kerr,the coach of the warriors, by report, having a spinalfluid leak, which i will say,

for the record, ihave not seen him. i know nothing abouthis medical problem. george clooney has talkedabout, in public interviews, his struggling witha spinal fluid leak. but really, the stuff i'm goingto talk to you about today comes not only fromthat experience with my daughter,which got me reading a lot more aboutspinal fluid leaks, but a piece that was in the newyork times roughly a year ago.

and this piece-- there'sa section in the new york times called the well section. and they occasionallyrun a little piece called think like a doctor. and this one was calledthink like a doctor swept off her feet. and you can see it'sdated february 11th. and the challenge was,can you figure out what's wrong with a youngwoman with a headache that's

lasted for months, whobecomes too dizzy to walk. and i read aboutthis young woman. and it turns out thatthe case itself was written by dr. lisa sanders. and it turns out lisasanders is the inspiration for the actual dr. house series. so she's an internistwho works at yale. and so she wrote the piecein the new york times. and the case thatshe wrote about

was a 21-year-old womanwith a three month history of intractable headaches nowcomplicated by severe dizziness and passing out upon standing. and this young womanreported that her pain started after awhiplash accident roughly three months before shewas admitted to the hospital. her headache was worsewhen she stood up. she was nauseatedbut did not vomit. and she reportedthat her headache

seemed to start inher neck but was felt most strongly in the forehead. she had difficulty withthinking and concentration, and she had dizziness,but it was only present when she was upright. and it resolved completelywhen she was lying down. she also noted that herleft ear felt stopped up. and because i had been readingand reading and reading about spinal fluid leaks,i read this and i thought,

she must have aspinal fluid leak. and so i wrote in mylittle contribution because they invitecontributions from doctors. and i wrote about why i thoughtit was a spinal fluid leak. and then the next day--the beautiful thing is they put up thediagnosis, so you get to find out if you were right. and the diagnosis--in the things that led to thediagnosis, they reported

that her head ct was normal. and a lumbar puncture wasdiscussed a number of times, but it was never actuallydone, possibly because it was technically non-feasiblebecause she'd had previous lumbar spine surgery. which we should recognize,in and of itself, is kind of weirdfor a 26-year-old to have had previouslumbar spine surgery. but they noted that herpulse was 74 when lying down,

but when she stood upher pulse went to 130. and this was reproducedin something called a tilt test where they lied her downon a table and they tilted her. and the tachycardialed to a diagnosis by a full professor ofneurology at harvard hospital-- at one of the harvard hospitals,beth israel in boston. and she was diagnosedwith pots, not a csf leak. she was diagnosed with posturaltachycardia syndrome, or pots. and i was botheredby this because i

thought she had really describedwell, a spinal fluid leak. and what's interestingis when you've got pots, while there are some treatments,what they talk about is really that what this patient hadto do was learn to cope with her symptoms. over the years, since thispatient's diagnosis was made, she's learned a fewtricks to accommodate her invisible disability. she eats lots of salt,which keeps her blood

vessels as full as possible. the idea is with pots,unlike a spinal fluid leak, the problem is your bloodvessels aren't constricting enough when you stand up. and so you're not gettingenough blood to your head. and so the conceptionof pots is not that there is somekind of leaking fluid from your spinal canal. the concept with pots is thatthe autonomic nervous system,

which is supposed to tell theblood vessels to constrict, isn't working right,either because of genetic factors,in some cases autoimmune factors,in many cases, there's not even amechanism postulated. but the thought isthat it's basically a disease of theautonomic nervous system. and the thing that i kindof didn't like about that was that this young woman alsohad a history of joint problems

in her temporalmandibular joint. she had scoliosis, and she'd hadthe spine surgery 18 months ago and then a reoperationthree months later. but we'll come back to that--why that would be important. so let me give you a littlebit of an anatomy lesson that will help you understandthe distinction between pots and the other thing,which is the main part of our conversation today,which is a cerebral spinal fluid leak.

because what i'mgoing to tell you is that i think that dr.house and dr. freeman actually got the diagnosis wrong. i think their patienthas a spinal fluid leak, and i'm going totell you why, and why those other thingslike the scoliosis and the temporomandibularjoint pain and the previous back surgerymight actually be important. and to do that, ifirst have to teach you

a little bit about how ourbodies are put together. so this first imagehere is an image of a dissection of theback of someone's neck. and what you see isthey've taken off the skin, and they've taken offthe superficial muscles, and they've even takenoff the bones that surrounds the spinal canal. and inside thespinal canal, what you find here is boththe spinal cord--

and surrounding thespinal cord, which has been cut away righthere, is this bag, the surrounding tissue thatsurrounds the spinal cord here. that's called the dura. and the dura extends all theway from the base of the skull up here down to the tail bone. and inside that durathere's normally spinal fluid thatbathes and surrounds the spinal cord and the brain.

and the thought is thatthe brain is basically floating in this fluid,and it acts, in some ways, to mechanicallyprotect the brain. and it serves someother functions in terms of allowingmetabolites to get to and from the neural tissue. and i've blown itup here so that you can see it a little bigger. again, the spinal cordhere and the dura--

cut there so you can seeinside this bag of fluid. ok, when people talk abouta cerebral spinal fluid leak or a dural tearor a dural leak, they're talkingabout a tear in this. this is what it lookslike if what you do is you cut across here instead ofcutting across the back of it. so if you take astraight cut across here, you see the spinal cord. some nerve roots coming outsurrounded by this bag of fluid

here. and what you'll see is,also, not only do the nerve roots come out, but asthey leave the bag of fluid they have to pokethrough the bag of fluid. so they have to-- inorder for the nerves to get out andbecome these nerves, and they have to create adefect in that bag of fluid. and not only do they create adefect in that bag of fluid, but the back of fluid,then, invests and surrounds

those nerves so thatwhat you see out here is much thicker than the littlenerve strands while they're in the bag of fluid itself. this is another image ofwhat that dura looks like. and yet another image. and you can see this. the bag here, the dura, reallyhas some substance to it. it really has somethickness to it. and it has to be watertight,because if it's not watertight,

and i have a column offluid from here to here, there are no valves in there. so at the bottomof the sac, it's seeing three feetof water pressure. it's got to holdthat pressure in. its got to hold that fluid in. so the question is, whatcauses people to leak? and there arereally three things, and they're illustratedon this slide.

the first thing thatcauses people to leak is when their connectivetissue is not quite right. here's a patient of mine whocame in complaining-- actually, she had been diagnosedwith pots, the same thing that dr. sanders anddr. freeman's patient was diagnosed. and she had headacheslike their patient that was a big part ofthe symptom complex. but she had a reallyflexible joints and skin.

and it turns out, that if youhave connective tissue that's extra stretchyand flexible here, then the bag of fluidthat holds your fluid in is thinner and more susceptibleto having a tear or a leak. so one thing thatwound up important in evaluating thisyoung woman's headache was looking at her handsand her flexibility. her connective tissuewas not quite right. the second thing that can causesomeone to have a spinal fluid

leak is when somecalcified bony thing is poking into that bag of fluid. so this image comes from a ctmyelogram of a patient of mine who had the worstheadache of her life. started smelling a badodor in her nose every day. the headache was worse andworse as the day went on, and she was upright withprolonged upright activity. and finally, she had a fullon seizure once as well. and so she had thesedebilitating headaches,

this funny smell, and nobodycould figure out what it was. and we went looking fora spinal fluid leak. and what we foundwas this calcified-- she had a bulging diskin her thoracic spine, and it had calcifiedin this funny way where it kind of pokes right throughthe dura to the spinal cord. here's the spinal cord. and this is in a ct myelogram. we inject contrastinto the spinal fluid,

and you see it surroundingthe spinal cord here. and so what you see is thatcalcified spike driving right through that. and we've seen that in anumber of other patients. we'll go into that more. and the third thing thatoften causes people to leak is a doctor messing around,doing things to their spine. whether that's some surgeontrying to help steve kerr, or it's a doctor tryingto do a lumbar puncture,

or someone tryingto alleviate pain with something like an epidural,accidentally getting just a little further and gettinginto the spinal fluid. and so if you know someone who'shad an epidural or a spinal tap or has significantdegenerative disk disease at multiple levels,where one of those disks might have calcified,where you know someone whose connectivetissue isn't quite right. these are the kind of people whoneed to be seeing this video.

and when i say their connectivetissue isn't right or isn't quite right, whatdoes it look like? so here's a ct myelogram again. but instead of cutting across,we're cutting up and down. and what you see here is thespinal cord in the middle. and here's the bones thatmake up the spinal canal on either side. the white stuff here iscontrast in the spinal fluid. i've blown up thissection here on this image

here, so that we can get alook at what's different here. what do we seehere that we don't see down here or down here? what we see here, thesekind of lobulated structures that have the contrastin them, the contrast is no longer confinedjust in the bag of fluid. it's starting to getinto these nerve roots. leaves in these dilatedbulbous looking structures. that is essentially an aneurysm.

it's an aneurysm ofthe bag of fluid. it is an aneurysmof the fecal sac. and what we call that--sometimes they'll call it a meningeal diverticula. sometimes you'll call it adilated nerve root sleeve. sometimes they'll callit a perineural cyst. but what it really is--it's not a cyst in the way that most peoplethink of a cyst. this is an aneurysm,a little ballooning

out pouching that's formedwhere the nerve has to poke through the bag of fluid. remember i toldyou that nerve had to poke throughthe bag of fluid, and it creates alittle weakness? that is what happens when thatweakness causes a defect that grows and grows and grows. and like a balloongetting blown up, it gets thinner and thinner.

and eventually, it can dowhat you would imagine. especially, imagine you'vegot one of these things, and you get in a whiplashaccident and your head jerks back and forth. well, this isn't in the neck. this is down inthe thoracic spine. but imagine that happens. and imagine the seatbelt hits you hard and compresses yourabdominal contents,

and you get apressure wave going through your spinal fluid. and that pressure wave hitsone of these things, and poof. now you've got aspinal fluid leak. and people arewondering why you're having all theseheadaches and neck pains after a car accident. they don't go lookingdown in your lower back. and this is what it looks likewhen somebody operates on it.

here, what you see is the spinalcords running along up here. and it's a little hard tosee on this television, but where the nerveroot is coming out here, you have this lobulatedaneurysm coming off another kind oflobulated aneurysm that had developeda tear across it. so here are other people whohave seen just in the last six months whose connectivetissue, again, you get the sense that theirconnective tissue isn't right.

so here's somebody's bag offluid with contrast in it. and then you see here atthe bottom it trails off the way it's supposed to. but then there'sthis other thing that's not supposed to behere, filling with contrast with poorly defined borders. and i've blown it up overhere so that you can see. this has actuallybeen connected, and where a nerve root issupposed to come off down here,

they've developed thisaneurysm dilatation at the bottom oftheir fecal sac. and not only that, but theirlittle aneurysm dilatation has developed ananeurysm dilatation. and that has three feet ofwater standing on top of it. what happens whenthis guy coughs? so how do you know yourconnective tissue isn't right? if you're watchingthis video, and you've got chronic headaches, andyou've got chronic neck pain,

and you've got nausea,and you've got vomiting, how do you know when yourconnective tissue isn't right? people are often hyper flexible. they're often double jointed. they're often finding thatwhen they are kids especially, they're more flexible thanthe other kids in gymnastics. or they're better able todo the poses in ballet. and they also notice thatthey bruise all the time, and they don't know whythey're bruising all the time.

they can't even rememberwhat they bumped into and they're bruising. sometimes they're,frankly, double jointed. sometimes wounds havea hard time healing. we've seen a couple ofpeople with this problem who've had early cataracts. it's not unusual to havea cataract when you're 65. it's not unusual to havea cataract when you're 70. but it's really unusual tohave a cataract when you're 40

unless you've had somedirect eye trauma. but when you see someonewho's in their 40s or is in their 50s, and they'vehad bilateral cataracts, something's not right withtheir connective tissue. and if that person also iscomplaining of feeling worse in some way, late in theday or when they're upright, that's someone whomight be leaking. this person whois hyperflexible, when you look atthem-- and you may

think that what they're doing isbeautiful-- that's not normal. not only is it notnormal, you can't do that if you'vegot normal genes. something's different aboutthe way she's put together. and that makes her ableto do certain things, but it makes her prone to otherthings like a spinal fluid the other thing thatyou'll find is many people who have connective tissuedifferences are rather tall. and if they're nottall themselves,

they've got someone who's over6' 2" in their direct family. they've got abrother who's 6' 3" or a sister who's six feettall, or their father's 6' 4". " when you see someone who isunusually tall-- and for me, that means taller than me. if i'm 6' 2", and i seesomeone who's taller than me, they're unusually tall. someone who'sunusually tall, who's complaining of headaches orweird neurologic symptoms

should be evaluated for a leak. all right. again, how do you know yourconnective tissue isn't right? so here's what act myelogram should look like in someone whoseconnective tissue is right. see how they have these nicedisks in between each bone? and there's some nicespace that's uniform. there's nothing bulging outinto the bag of fluid here. that's a good healthy spine.

this is what it looks likewhen someone has bad connective tissue, and theyhaven't been dropped. you can have a spine thatlooks like this if you've been dropped out ofa third story window, or you can havea spine like this when your spine just isn'tbuilt with the same strength that other people's spine is. when your spine doesn'thave the same strength, it's because the connectivetissue is not the same.

it's not right. it's not normal. you shouldn't have abad disk here and there and there and thereand there, and even up into the thoracic spine withbulges at multiple sites. that's not normal. that individual also hada carotid dissection. this is a problem where theblood actually sheers along the wall of the carotid artery.

again, not normal, and a signthat the connective tissue itself is not asstrong as it should be. when someone likethat has nausea that's worse late inthe day every day, or headaches that are worselate in the day every day, someone should bethinking about a leak. somebody who has multi-leveldegenerative disk disease in their neck and theirthoracic spine, their lumbar spine-- yes, their spine isbad, but it also tells you

something about their genes. and understanding the connectionbetween that and the syndrome that makes people feelworse when they're upright is a critical understanding. you know your connectivetissue isn't right if you have anabnormal heart valve. people with connectivetissue problems will have mitral valve prolapse. they'll have aorticbicuspid valves.

they'll have aortas-- the mainblood vessel that comes out of the heart willbecome dilated, and you'll get anaortic aneurysm. or you can have an aneurysmin some other blood vessel. and sometimes, again, youcan get that kind of problem that we call a dissection,where the blood starts to carve into the walland spread along it. so that's how you know if yourconnective tissue isn't right. let's talk about other things.

so this is further images ofthe person who i told you, where you've got thecalcium spike poking in towards their spinalcord with the contrast in the spinal fluid here. and what you see is justabove and just below this. when you see this kindof calcium spike coming into the ct myelogram,and then you see this little contrastthat looks almost like it's spreading along thenerve root at the level above

and the level below,it's kind of faint. it doesn't pop outand catch your eye. but that constellation whereyou see something poking at the dura, andabove and below it you see unusual spreadof the contrast. and you don't see itat other levels, that tells you there's a problem. and you won't seethat on an mri. this is what thatperson's mri looked like.

here, very clear calcium spikecoming in touching the cord. we all kind of worshipat the temple of the mri. and what you see hereis-- this person's mri was read as basically normal. there's a bulging diskin the thoracic spine. nothing that wouldexplain someone having terrible headachesand awful smells every day. and that's what it looked likewhen you cut down on the mri. i've blown up that onedisk to look at it here.

and again, you wouldn'tthink much of that. and the reason ishow you the images, someone out there isgoing to watch this video, and they're going tothink about the fact that they're havingnausea every day, and it's worse late in the day. where they're goingto be thinking about how they have a headacheevery day late in the day. and how it's gone when theyfirst wake up in the morning,

and no one's beenable to explain it. and they're going to have got--maybe someone even thought of a leak. and they got anmri to look for it. and they thought that wouldbe a good way to look for it, but it's not. it missed it on that patienti just showed you about. so bone spurs cause leaks. here's someone else whowalked in complaining.

interestingly, hedidn't have a headache. what he had was confusion. he would get moreand more confused the longer he was upright. and then he'd lie down for ahalf hour, and he'd be fine. and he'd get up andtry and work again. and after a couple hours,he'd be disoriented and start being confused. he wasn't sure how toget where he was going.

he couldn't remember things. and this is what thect myelogram-- again, the test where they stickcontrast into the spinal fluid and do the ct scan. it showed this littlebony ridge here. one of his disks had bulged,just like the previous woman. and it had calcifiedright where it's poking in at the bag of fluid. and i've blown that up hereso you can see it better.

so we were suspicious,because when you hear about symptoms that areworse when someone's upright, even if they're neurologicweirdness, which is really what he was describing. and it's worse thelonger someone's upright, you should be thinkingabout a spinal fluid leak. and when you seesomething's calcified that's poking towardsthe bag of fluid, you've got to go after that.

and this is what it lookedlike on the axial cuts, where you cut across this way. and what you see is, again,this nubbin of calcium poking right in all theway to the cord itself, through the bag offluid, which is here. and just like inthat other patient, you see the contrast spreadingoff along the nerve root here. so it's, again,the constellation, not just of the bonyosteophyte, which

is what we call these thingspoking toward the bag of fluid. it's the bony osteophytepoking toward the bag of fluid with contrast spreadingalong the nerve root in a patient who's saying,i'm worse as the day goes on. i'm worse thelonger i'm upright. i'm worse when i'm doing thingswhere i'm exerting myself or i'm dehydrated-- otherthings that lower spinal fluid pressure. that's someonewho has-- and this

is the criticalthing-- that's someone who has a fixable problem. and that's reallythe amazing thing and why i'm callingyou to join me in helping to find peoplewho have this problem. it's awful when someone hasa condition like pots where they're debilitated, andevery day is a struggle to get through and the strugglethe longer you're upright. but it's an even bigger tragedywhen what they really have

is something that can be fixed. because what was thatother woman being given? she was being giveninstructions on how to cope. and don't get me wrong, helpingpeople to cope is important. but you've got to look forthe things you can fix. somebody else who walkedin complaining of pots, they thought she had pots. and they even thought shehad something called a chiari malformation, where herskull supposedly wasn't

big enough in the back part. and so they thought it wascompressing her brain stem, and she had a surgery toopen up her skull base. and only later did wefind this bone spur and if you look reallyhard, what do you see here? you don't justsee the bone spur. what's this? it's a little different, right? a little bit of contrast here--over here-- but it's subtle.

you have to really look forit, and you have to look hard. you have to know whatyou're looking for. so here's the third way. so now we've talkedabout two ways that you can have aspinal fluid leak. one, your connectivetissue isn't right. two, there's a bone somewherepoking at that spinal fluid. and you can't see the bonereally well on an mri, but you can see those bone spursclear as day on a ct myelogram.

and here's the third way. some well-meaningdoctor tries to help you with surgery or witha needle for something like an epiduralsteroid injection, and they accidentally getinto the bag of fluid. and this is somebody lookingon an x-ray camera that accidentally injectedinto the bag of fluid, because that bag of fluidcan follow the nerve root out for a couple of millimeters.

now here's where itgets complicated. and this is why peopleare kind of poorly served by the medical systemwith this problem. and why someone likeme needs your help to find the peoplewho are leaking. and it's becausemost doctors think they know about thisproblem, but what they know about is actually wrong. ok?

maybe that's overstated. what they know about it is trueof a related problem that's different, ok. so in the late 19thcentury in about 1880, they started doingspinal anesthetics, where they wouldinject local anesthetic into the spinal fluid. and this was a great advancefor certain kinds of surgeries. but what theydiscovered very shortly

after discoveringspinal anesthesia was that when you stick aneedle in somebody's back, the next day theyoften have something called a spinalheadache, which is from the csf leak that's createdby the puncture of the needle hole. now what's important is whenyou have a post puncture headache, which isa kind of csf leak, it has a well definedonset that was

just yesterday or last week. so number one, those peoplepresent in the acute phase. they don't present when they'vebeen leaking a long time. and it turns out in thiscondition, symptoms change. when you leak for a littlewhile versus leaking on and on and on-- whenyou're first leaking, when you lie down, you feel much better. when you get up, you feel awful. when you've beenleaking a long time,

everything up there is a littlebit inflamed and a little bit not behaving right. so when you lie down, youdon't feel better right away. it takes a long time lyingdown to feel better when you've been leaking a long time. but most people,most physicians, are so familiar with thepostdural puncture headache that happens when theystick a needle into someone and cause a leak.

they know-- those people, youlie them down, they feel fine. stand them up, they feel awful. so if they even thinkabout a spinal fluid leak, they think, oh, ican test for that. i'll just have themlie down in the office, and if they say theirhead still hurts, then they don't havea spinal fluid leak. but that's not true. it's more subtle,and that's why i

was talking earlierabout the people who have chronic leaks-- it's notthat they lie down and feel fine. it's that in themorning, when they've been lying down allnight, they feel better. maybe not totallyperfect, but better. and as the day goeson with them being upright longer and longer,they start feeling worse. so we have somethingcalled a postdural puncture

headache, which iswhat happens when you stick a needle in someone. those people have a single leak. you only pokedthem in one place. we know that 30%to 40% of people who are leaking spontaneously--30% to 40% of them are leaking at multiple sites. why? because their connectivetissue isn't right.

so it doesn't justaffect one site. often, they're leakingsomewhere else. and maybe they don't presentwhen they're first leaking. they're going along leaking, andthey're kind of compensating. and then they fallon the stairs, and they start leakingfrom a second site. now they can't compensate. they can't make spinalfluid fast enough. so by the time theypresent needing help,

they're leaking frommore than one place. postdural puncture headache--single leak, spontaneous leak, maybe multi-site. postdural puncture headache--this orthostatic headache. orthostatic is afancy medical word for saying that it'sthere when you're upright, and it's not therewhen you're flat. these people have anorthostatic headache. these people, not so muchan orthostatic headache

but a late day headache,an exertional headache. and the non-orthostatic--meaning it's not necessarily controlledby their posture, but they've got achronic daily headache. these people, thepeople who've just had a needle stuck inthem, 90% of those people are fixed with oneepidural blood patch. we'll talk about what thatis, but it's basically when you inject blood outsidethe bag of fluid to try

and clot off the whole. 90% response tojust one epidural blood patch for someone who'sgot a postdural puncture headache. only a 30% chance of respondingto that first epidural blood patch when you'releaking spontaneously. i showed you thatpicture where there was a big long line where thatnerve root sleeve had ruptured. right?

it's not just a point defect. it's a defect that haslength and conformation that is irregular. it's harder to close. the natural history of apostdural puncture headache is well understoodand well described. most of these thingswill heal on their own. some will require anepidural blood patch. these are mostly benign.

very few people havechronic problems from them although it's well documentedthat some people do have chronic problems from these. for some people, thesedon't heal on their own. and for some people, even asingle epidural blood patch is not enough. so somebody whosays, i was fine, and then i had anepidural for my child. and they accidentally gotinto the bag of fluid,

and ever since then,i've had headaches. that's real. the natural historyof spontaneous leaks are poorly understood. we don't know how many peoplewho have spontaneous leaks get better. when a bone spur pokesthrough that bag of fluid, how many people canseal over that bone spur and just incorporateit into the wall

of their bag of fluid? we don't know theanswer to that question. what we know is thatthese people are marked by chronic disability. they are suffering andsuffering and suffering. and it goes on and on. these are rarely mysterious. these are often mysterious. young women are mostat risk for this.

it appears that women arealso more at risk for this. these are fixable. these are also fixable, whichis why i am here giving you a lecture today andasking you to help me find the other people whoare leaking, because they're out there and they're suffering. and a system-- we have a medicalsystem that is designed for you to come in anddescribe your symptoms and get referred tothe appropriate expert

in that field, and thenget a correct diagnosis and correct treatment. but when you have somethingthat's pretty infrequent and presents withsymptoms that are so common to other things--neck ache, headache, nausea, fatigue-- these are things thatthe medical system-- if you have a treatable cause with somestructural problem like i've shown you, and it'scausing those symptoms, the likelihood ofthe medical system

arriving at the correctdiagnosis is low. and so people who have someexpertise and some knowledge about this have some kind offundamental responsibility to go out and lookfor these people. and now that youknow, i want you to join me and take on themantle of that responsibility in trying to findsome of these people. because in sixmonths-- in six months since i startedreading about this,

we have found 26 peoplelike this at stanford. and if we found that manypeople, it can't be that rare. if we've found thatmany people, you either know someone whohas a leak or you know someone who knowssomeone who has a leak. and you should be tryingto figure out who that is. and so, if you'rewatching this online, i'm asking you to take twominutes right now and send a link to this video to two orthree people who you think have

some chronic ailment that might,just might be related to this. just take two minutes. don't try to make it perfect. don't try to research everythingabout this before you send it. just do what you cando in two minutes. so the symptoms of a leak--we talked about headache-- maybe orthostatic--nausea and/or vomiting, ringing in the ears. people who are leaking--something like 70% or 80%

of them report that theyhave ringing in their ears. if you know someone who haschronic ringing in their ears, who also is abnormally tallor has abnormal flexibility, you should be puttingthe two and two together. it's something tothink about and pursue. neck pain and stiffness,neurologic weirdness-- we talked aboutpeople who are getting disoriented after beingupright for too long. i mean, that's really bizarre.

and fatigue-- the peoplewe've been finding and helping with this problem have beentalking to us about the fatigue that they had thatnow is better. so i like this. this is the headache,and i like it because she'sactually lying down, which is what these peopledo to try and get better. the vomiting, theringing in the ears, the neck pain, and feelinglike they're unplugged,

both in terms of theneurologic sense of they feel somehow separatedfrom their environment, and also feeling likethey're all out of energy. they're fatigued. i had a womanearlier this week who we think is leaking, whodescribed that sometimes, if she's been up too long,she can, for instance, be driving on her way home. and she getsdisoriented and isn't

quite sure how to get home. she'll be on thehighway, and suddenly she doesn't know what exitshe's supposed to take. the mri findings that you cansee in people who are leaking are well described. and when you take-- if youhave an intact skull, what that means is if you drainone thing out of the skull, and the skull staysintact, the volume has to get made upby something else.

and so if you suckfluid out of here-- because this is normallya fluid filled space, and this is normallya fluid filled space-- if you suck fluid out ofhere because you're leaking, the changes youget look like this. the ventricles,which have fluid, become a little more small. and the cisterns,the big fluid filled spaces that surround the nooksand crannies of the brain,

have less fluid in them. this thing called the"optic chiasm" often becomes flattened,and in fact, can bend over the pituitary gland,which itself becomes bigger. the pituitary gland islike a great big vein. and when the pressuresurrounding it gets low, the vein expands. and when the pressure aroundit gets high, it collapses. and so one of thebellwethers of what's

happening to thepressure in your head is the pituitary gland. people with intracranialhypertension-- too much pressurein their head-- can often wind upwith a syndrome that's called an empty sella syndrome,or a partially empty sella syndrome, which is a fancyway of saying their pituitary is collapsed. and people who have low pressurehave very robust-- sometimes

what we call hyperemicpituitaries, where they're real bright on the mri. sometimes they're enlarged. and so here's someonewho is leaking, and so their ventriclesare a little bit small. there's not as much space there. the pituitary is alittle bit large. and they have this thing calledpachymeningeal enhancement, where they have thisarc of bright tissue

over the surface of the brain. in contrast, this is themafter they've been patched. the ventricles, justa little bit bigger. the pachymeningealenhancement went away. the pituitary got smaller. and this is what you seewhen you're looking not front on but down the side-- what'scalled the sagittal view. and what you see is when someonehas a leak, which is over here, the fluid in front of thispart of the brain stem

called the pons is reduced. and the fluid uphere is reduced. and you can actually see thecerebellar tonsils, which are these things, startto kind of come down and poke their wayout of the skull. when there is a normalamount of fluid, the cerebellartonsils stay up here. the fluid in theprepontine cistern, which is the fancy way of sayingthe fluid from the pons here,

should be more robust. and there should bemore fluid around here. similarly, thepituitary gland here should be a little bit smallerthan the pituitary gland here. and in real life, what itlooks like is like this. so here's someone whopresented with a leak-- not one of my patients,a published patient. and what you see is thiswhole bottom part of the brain looks like it's beenkind of compressed

into the bottompart of the skull. so we call that staging. and the pons hasbecome very flat, and the tonsils have become sothat they're poking out there. that is a classic appearance fora cerebral spinal fluid leak. but what i want totell you is that we have been finding thata lot of the people who have a headache that can befixed with an epidural blood patch have mris that aremuch more normal than that.

and so one of themost dangerous things that can happen to someonewho's got a spinal fluid leak is they get an mrithat's read as normal. and often, they're muchmore normal than these. these are mris of people whoare really extreme leakers. and it's clear that mostpeople are not extreme leakers. this is the mri of someone whowe fixed with an epidural blood patch. this mri was read by a stanfordneuroradiologist who is a world

class radiologist, as normal. now the truth is, itdoesn't show the things that this mri shows. there's a lot more fluidin the fourth ventricle here than there is here. there's a lot more fluidhere than there is here. but for this young womanthere wasn't as much fluid here as she needed. and she was someone who hadbeen diagnosed with pots,

and who subsequently got anepidural blood patch, and then two more. and then went back to work andstopped being on disability. and this is what the publishedct myelograms, showing a leak, show. they show a cord here, contrastaround it in the fecal sac, some coming out here. often, if they're profoundleaks, they're way out here. but again, a lot of leaksmay be more subtle than that.

this is what a spinal fluidleak is supposed to look like. but the truth is, if you havea leak where it's not obvious that there is somekind of contrast here outside a welldefined fecal sac, do you send in your subtlepicture to a journal? the journal may not take itbecause, in fact, they may say, i'm not sure that shows a leak. so what they do is, yousend in your things that are obvious to thejournals, and everyone

becomes educated about theobviously leaks, but not the subtle leaks. here's another thing of what theleak is supposed to look like. and another. but this is one of thepeople who we fixed with an epidural blood patch. it really doesn'tlook like this at all. or this. you could say it kind oflooks like this published

image, where you've got thecord and the bag of fluid and a kind of trailingout along the nerve root. so here's a ct myelogram,again, read by a world class neuroradiologist as normal. because they said, well,sometimes you can see this. sometimes you can see this. and that's the mostdisturbing thing of all, because i think when they say,sometimes you just see this, i think you're just seeingthis because more people are

leaking than we realize. labs-- what kindof labs can you do to help confirm orcontribute to the diagnosis that someone is leaking? well, there are a couple things. one is that if you're leakingand your brain is actually having just a littlebit of traction on it, this thing here, whichis the pituitary gland, is connected to the rest ofthe brain by a real thin stalk

and if there's just a littlebit of traction on that stalk, the brain stops telling thepituitary gland what to do. and you get a particularkind of syndrome called hypothalamicpituitary dissociation, which is a fancy way of sayingthe brain isn't telling the pituitary whatto do anymore. and interestingly, when youstop telling the pituitary gland what to do, most of the thingsthe brain tells the pituitary what to do are positive things.

it tells the pituitary, makethyroid releasing hormone to tell the thyroids tomake more thyroid hormone. or make corticotropinreleasing hormone to tell the adrenal glandsto make more cortisone. but one of the things thatit tells the pituitary to do, it's telling thepituitary not to do. it's telling the pituitary,don't make prolactin. the brain is normallytelling the pituitary, don't make prolactinbecause that's a hormone

that you only need made whenyou're breastfeeding a baby. and so, when this stalk getsdisrupted because someone's leaking, sometimes those peoplehave an elevated prolactin. and over the lastsix months as we've been looking at people whoare potentially leaking, roughly one in five havean elevated prolactin. the other thing is, again,if you drop the pressure in the head because there'sall these different veins in the skull-- if you dropthe pressure in them-- inside

of the skull-- now theveins expand because there's a big pressure gradientbetween the normal pressure inside the vein and the reducedpressure inside the skull. and as those veinsexpand, they actually start to have somefluid from the veins steep across the veinsinto the spinal fluid. and when that happens,people's spinal fluid has just a little more proteinin it than it's supposed to. and so, every person whowe send for a ct myelogram

now, not only do theyget their ct myelogram and have the contrast injectedinto their spinal fluid, but before we do thatwe do two things. we measure an opening pressure. we actually measure thepressure in the spinal fluid, and we send some ofthat spinal fluid to the lab to have themlook for elevated protein. and so far theelevated protein has been the most consistentobjective thing

that suggests to us thatwe're really on the right path and that they're leaking. treatment-- what canyou do for these people? so there's something calledan epidural blood patch. and an epiduralblood patch starts with getting blood steriley. so here's someone who's aboutto undergo an epidural blood and their arm is getting preppedthe way you would normally prep a surgical site.

you've got to dothis very steriley. and then after we prepout the arm, we go ahead and we put an iv inone of the big veins, and we attach thativ to some tubing. and the beautiful thing aboutattaching it to that tubing is now you can just put anopsite or a band-aid over that. you don't have to worry aboutthe sterility of that anymore. you cover that up. now you've just got to keepthe other end of the tubing

sterile, which meansnow you can turn this patient over andstart working on putting your needles into their back. and you'll still be able toget sterile blood from them. so what we do is we then handoff that tubing to someone else who takes it andkeeps the end of it, which has a syringe on it, sterile. and now they're lying face down. that syringe is going to getput on that table to wait.

and now that they'reface down, they start to have a needleput in their back. and the needle is getting putin their back in this funny way where you have asyringe attached to the back of the needle. and what he's doingwith his finger here is he's actually puttinga little bit of pressure on the air in here. and it turns out, ashe's putting that needle

through the ligamentsin the back, he's coming infrom the skin here. and he's not going to beable to push a lot of air through that needle as he'scoming through these ligaments. and then when he popsthrough that last ligament into this space, whichis labeled number four, suddenly the air isgoing to go easily. and he's going to knowhe's in the epidural space. so what this imageis showing you here

is the spinal cord ishere-- number five. and the bag of fluidwe're seeing edge on here, that's number three. the spinal fluid isinside the bag of fluid. the epidural space isout here in number four, outside the bag of fluid. ok. and you could see how,if you had a tear here, injecting blood in thisspace so it could clot over

that tear might be exactly thething that the doctor ordered. that's a little schematic of thesame thing i just showed you. and so once theneedle is in place, you come back to that tubing. you suck all the fluidout of the tubing until you're getting blood back. you aspirate that bloodinto another syringe here. fill it up, give it back toyour colleague who has just put the needle in theepidural space.

and now all that bloodgets injected back into the epidural space whereyou think they're leaking. and you can see it spreadinghere, that dark line, as we mixed somecontrast with the blood. and this is what itlooks like on a ct scan. and this is whereyou can see how you might have some challenges. here's a ct myelogram, again,the thoracic spinal cord. you've got the bag offluid surrounding it.

remember thatosteophyte that was poking through the frontsurface on that other image i showed you? here's the epidural blood patch. you could see how that mighthave a hard time making its way all the way aroundto get to there when this is how much blood they put in. so sometimes you have to dohigher volume blood patches. sometimes you've gotto do fancy things

like put the needlein from the side here to get it to thefront, what's called a transforaminal approach. here's where they triedto do that for a patient. where they tooka needle in here, and they injected somethingcalled fibrin sealant. so this is what we do whensomeone's blood patch doesn't work. so if the blood is notenough to fix the problem,

they may inject somefibrin glue in there to try and fix the problem. and that seems to work for somepeople whose epidural blood patches don't work. and we tried that for thispatient with the calcium spike. with our neurosurgicalcolleagues in the cath lab, we came in from the side,put a needle in like this, and we injected some glue. and that glue ishere spreading around

like this, this darker area,spreading around, getting narrower andnarrower and narrower and coming to thebase of that spike. and you know what? it did not work. and so she didn't get betterfrom an epidural blood patch, and she didn't get betterfrom the lateral placement of some fibrin glue, and soshe went on to get surgery. and this is an image of someoneelse not, the same person,

getting surgery, where theseare actual metal clips now that have gone into clip off some of those aneurysmal dilations. so who were these images today? this mri that wasread as normal, who had this ct myelogram thatwas read as normal, who also had this on her ctmyelogram that was read as a variant of normal--this is what she looks like today after herepidural blood patch.

she went from being essentiallydisabled and on disability to working full time andactually hiking and climbing. and she's in the backof the room today. and this bone spur thatwas causing a spinal fluid leak-- that was read as notshowing a definite leak. and this was read as notshowing a spinal fluid leak. and this mri was read as normal. after an epidural blood patch,this is what he looks like. he's gone from being--this is the gentleman who

was disoriented whenhe was up for too long. he's gone back toworking full time. and about a month after wedid his epidural blood patch, he sent us this image because heworks as a gamekeeper in south africa. and there he iswith a lion, walking and doing his job again. the big clue for him,despite his normal mri and ct myelogram, was thathe was six foot six.

so he was six foot six andcomplaining of the fact that the longer he was uprightthe more confused he got. and that told me togo look for a leak. and this, with the bone spurpoking in with some contrast, she's the womanwho had previously had her whole skull openedup to relieve a chiari malformation, one ofthe common misdiagnoses when people areactually leaking. after we patchedher, well, there

is her mri, whichwas read as normal and not showing any leak. and that's what she lookslike after being patched. and this is theother patient who had the calcium spike,who we tried to patch and who wound uprequiring surgery. and her mri thatwas read as normal, and what she looks like aftersurgery to fix her leak. and this is a young womanwho i didn't show you

images of today, with anothermri that was read as normal, and what she looks likeafter being patched. and someone else whose mriwas read as being normal, and someone else whosemri was read as normal, and how she looksafter being patched. and these are just thepeople that i've diagnosed in the last six months. people who walked in, peoplewho i stumbled across, who undoubtedly, were coming infront of me before my daughter

got sick and i started readingabout spinal fluid leaks. and now, now that iknow what to look for, i'm finding these peopleand i'm patching them. and that means that they'renot as rare as people think. and so you have to help me. you have to help me becausethose people whose pictures i just showed you werediagnosed with pots and chiari malformations. and ehlers danlos, whichis a connective tissue

problem, which is true. and tarlov cysts,and chronic migraine, and chronic fatigue syndrome. and one came in and toldme, i've got fibromyalgia. and one even had parkinson'sdisease symptoms. we're not sure if the onewho had parkinson's disease symptoms is reallyleaking or not. we're going to get tothe bottom of that. robert kennedy said, "it's notenough to understand, or to see

clearly. the future will be shaped inthe arena of human activity by those willing tocommit their minds and their bodies to the task. and so i've committedmy mind and body to the task offinding people who are leaking, looking for themwhere they may be hidden. and as part of that,i have reached out in the last six months to themarfan clinic here at stanford.

marfan's disease is a diseasewhere your connective tissue isn't quite so strong. and i've said to them, anybodywho walks in who has a headache or who has chronicnausea, i want to see them and evaluatethem for a leak. and i've called overto the pots clinic and said, hey, anybodywho comes in with pots, who has headache aspart of their syndrome, i want to see them.

and that's being fruitful. this person is someonewho i called when i got her name from the pots clinic. and i got it on a saturdaywhen i was babysitting my kid, and i brought her to theplayground at the mcdonald's. and i called her from theplayground at mcdonald's on a saturday, and i said,look, you don't know me. and i know this isgoing to sound crazy, but i think you don'treally have what you've

been diagnosed as having. i think maybe, just maybeyou have a spinal fluid leak. and sure enough,that's what she had. so if i can find thesepeople, and so many so fast in just the last sixmonths, i think if you're here and you're listeningto this, or if you're watching this on youtube,again, you either know someone who'sleaking or you know someone who knowssomeone who's leaking.

so i ask you tospread this message. and if you're watching thisvideo, spread this video. and that's it. thank you very much. [applause] questions? somebody who hasheadaches and may be tall, who gets botox injections,do they have the risk to get puncture and [inaudible] ?

so the question was, if someonewho is tall or maybe has other signs that theirconnective tissue isn't quite right, and they're gettingbotox for headaches, are they at risk ofhaving a dural puncture? we don't think sobecause the dura is inside the skull, number one. and when they're doingthe botox injections, they should not begetting close to the dura. but the biggerquestion is, is someone

who's getting botox forchronic headaches, who's tall, are their chronic headachesand their tallness related? are they related by the factthat their connective tissue is different? someone who's havingchronic headaches, who's particularly tall,should be thinking about, well, if i spent--let's say they're getting headaches every day. you should have thatperson lie flat for a day

and see if their normal2:00 pm 2 headache comes on. if they lie flatfor a whole day, and they find that it'sthe best day they've had in the last three orsix months, they're leaking. thank you. you're welcome. if somebody had a pons withwhite spots and acromegaly that improved overtime, could they have a spinal leakbecause of the pituitary

being large like that? so the question is, ifsomeone had abnormalities seen on their pons, on theimaging, and had an acromegaly, could that be caused by a leak? the thought is that a spinalfluid leak and its effects on the pituitaryshould, if anything, cause levels ofgrowth hormone to be a little bit lower, possibly. so you would notexpect acromegaly

to come from aspinal fluid leak. we have seen otherpituitary disorders. so we've seen theprolactin be high. we've seen peoplewho are diagnosed with hypothyroidism, whichis not so terribly uncommon. but we've seen peoplewho had hypothyroidism that wasn't because theyhad the usual case, which is hashimoto's thyroiditis,but actually they were leaking. and when we patched them,their thyroid hormones

started to come up. is a feeling of tightness onyour head or [? gapping ?] is that ever a symptom? many people describethe head pain as pressure or tightnessor a vice-like sensation. and again, if you or someonewho's watching is wondering, could the sensation thati'm having in my head-- i'm getting thispulling sensation in the back of my head.

i'm getting a pressure sensationin the back of my head. i have a vice sensation. if it's worse late in theday, that's suspicious. is it gone when youwake up in the morning? it's suspicious. if you spend a day lyingflat, is it all but gone? very, very suspicious. so one of the easy thingsif you want to know is this somethingworth pursuing,

if you're having those kindsof symptoms, if you spend the day flat, are they gone? other questions? when you're talking aboutabnormal connective tissues, i have a friend who has anextreme case of cerebral palsy. and she gets headaches daily. would the tightness of themuscles and connective tissue be a cause for a spinal leak? the tightness of themuscles and the tissues

would not be a causefor a spinal fluid leak. however, people who havecerebral palsy fall down a lot, and falling downcan cause a leak. people who havecerebral palsy sometimes get lumbar puncturesfor diagnostic studies. so the have a needlestuck in them. that could be areason for a leak. people who have cerebralpalsy, and it's severe, often have had back surgery.

and as we hear in the newsabout the coach of the warriors, back surgery can cause a leak. so again, if you're seeingsomeone who's having headaches, and they're theremost days, and if it's gone when they wake up in themorning after they've been flat for eight hours,or if they lie down and it feels better afteran hour of lying down, or if it's much worse latein the day, be suspicious. and test it.

it's easy to lie downflat for a day and see, are your symptoms largely gone? if you lie down flatfor a day, and it's the best day you've hadin the last three months, then somebody shouldreally be evaluating you. they should be doing themri, brain and full spine. and they should bedoing the ct myelogram. the mri that's readas normal-- and if you take one thing away fromall of these people whose

mris were read asnormal-- don't be stopped by an mri that's normal. if your symptoms aregone when you're flat, you need ct myelogram. and when they're doingthe ct myelogram, they should be measuring someof the fluid for the protein content. and if the proteincontent is high, you're on the right track.

or at least it's worthinvestigating seriously with someone who knows. and the doors hereat stanford are open. so is the blood patch--how long does it last? sometimes it canlast a few months, and then someonestarts leaking again. once they get past nothaving symptoms for a year, the thought is theirlikelihood of recurrence is very low overthe next 10 years.

so when you patchsomeone, especially if their connectivetissue is not right, the thought is thatthis is something that they're at risk for. but the truth is, let'ssay you had these symptoms and we patched you,and your symptoms went away for threemonths and then came back, now we know what it is. now we know what to do for it.

that's a whole much easierkind of problem to deal with. you patch that, and you move on. and the truth is for mostpeople we think what happens is you patch the leaks. and then they do wellfor a number of years. and they slip on the stairs,they start leaking again. so you would[? go in ?] for testing those people who have headachesduring the day, to lay down. the lay down is withpillows or without pillows?

the question is referringto my recommendation that people who wonder, could ihave something like this-- yes, spend a day flat. and when i say flat, it'sbest done without a pillow if you can tolerate it. we know people whohave postdural puncture headaches-- the thing wherewe cause it with a needle. many of those people willsay that even one pillow makes their symptoms worse.

so you really want to be flat. and if you're going tobase decision making on it, you really want to giveyourself the best trial. so you should reallytry and be flat. and you should try andbe flat all day long. you pick a saturday and you say,you know what, on saturday i'm going to listen toaudio books on my iphone or i'm going to read a book. and i'm just going to stay flatall day, and i'm going to see,

am i really experiencing thatthrobbing headache i always have at 4:00 pm. and if at 4:00 pmyou feel just fine, there's a likelihood thatthere's a big problem. and you've got to startgetting looked at for a leak. so now i need youto explain to me, if you stand and youleak, but if you are flat, you're [inaudible]. so it's clear--so let's say we're

looking-- i'm going to pull upan image to help explain this. so here's your normalspine and that bag of fluid that goes all theway up to the skull. you know the sensation-- whenyou dive into a swimming pool, and you try and pick somethingoff the floor of the swimming pool, how the pressure-- youfeel the pressure in your head as you go down and down. it gets more and more pressure. that's because you have a columnof fluid up on top of you.

here, down herelow in the spine, when you're upright thebottom part of your spine here and the fecal sac is seeingthe same kind of pressure as if you were in athree foot swimming pool. so if there is a little holeor a little problem here, or you have somethinglike this-- if you have-- do you remember theimage i showed you where there was thisbig kind of dilation at the bottom of the fecal sac?

imagine you've got that. when you're standing upright,that's under a lot of pressure, and it's going to leak. when you're flat,there's no pressure because the column, insteadof being three feet high is now two inches high. so it really doesn't leak much. and that's why peopledon't have as much symptoms when they're flat.

when you say the doors areopen, do you have studies that people can enroll in? well, at this point we'renot looking to do research. so i've written, i don'tknow-- 20, 25 papers. and i'm not sure that anybodyhas really read my papers, or that it's really helpedone of those people. what i know is the lasttime i gave a talk here on neuropathic pain, 3,000people watched that video. and that's why i'm here today.

it's because i figure if i drawa circle around me that's maybe 20 miles indiameter, there's got to be-- if i found close to 26people in the last six months looking for leaks, howmany people are living within 20 miles of where we areright now who are leaking right now? i'm trying to get themessage to them that i'm interested in helping them. not to do a study soi can write a paper.

so that i can helpthem be back at work and enjoying life again. so i'm doing things alittle bit differently. i'm not writing papers aboutthis-- at least not yet. i'm doing clinical care. and so it's not thatthere's a research study. it's that there is aclinical enterprise that is looking to helppeople who have this kind of fixable problem.

and so i'm trying tofind them, and that's what this is about today. i want to make a comment. i happen to be one ofdr. carroll's colleagues. and the reason this is soimportant-- what dr. carroll is doing reaching outthrough youtube-- is because there's sucha profound ignorance. and i was one ofthose people who was profoundly ignorant,and actually skeptical,

when dr. carroll wasstarting talking about this. and most of yourphysicians-- i don't care how brilliant they are. in fact, dr. carrollpointed out people who are worldclass radiologists, or some of my colleagueswho also happen to be pain doctors butprimary care physicians-- so if there is sucha profound ignorance, and all these people whowatch this youtube may

go to their local doctor. and your doctor says, oh, dr.carroll is probably crazy. and that's why it's soimportant to reach out. i had a case recentlythat was sent to me by one of-- actually, myprofessors who taught me at stanford in the 70s. and myself and dr.carroll and this professor were all there, and theanesthesiology department. and he's older than i am.

and he put in what'scalled an intrathecal pump into a chronicpain patient, where it's a pump that goes intothe spinal fluid space that is supposed to give you opioidsinto that space to treat some chronic pain problem. it turned out it didn'twork out that well, and that patienthad it pulled out. and she had a lot of issues. and everybody wastrying to blame

the patient for thesebizarre symptoms that nobody could understand,because at some point this pump was pulled out. and she was sent to me justto manage some medications. and i wasn't convinced that shewas making stuff up or weird, even though it was presentedto me by a former professor who i thought was quite bright. and as i started thinkingabout it, i said, this lady has a leak somewhere.

and i sent her todr. carroll, and he can describe, if you wants,what's been going on, but it's all heading in avery positive direction. so if i'm thinkingall these people who are stanford doctors--where i'd say, at least above average in ourexperience and knowledge-- don't get it. and i was skepticalabout some of the things that dr. carroll was doing.

and i'm beginning to think now,back to a lot of my patients who i took care of withpots, that i never really was able to help them in any way. that's why it's so important. i think that dr. carroll'sapproach in clinical care-- i'm reaching out becausethere are a lot of people out there. because of theprofound ignorance-- it doesn't mean thesedoctors are stupid,

but we just were not educated. i've done hundreds ofblood patches for the cases he described after epiduralsthat other people sort of put in the needle too far. and i said, god, thatdoesn't jive with that. but it turns out there'ssomething really here. and i think that's why thiswhole thing is important, and i think hisapproach is novel. and had i not cometo this lecture,

i wouldn't havethought how important that is because it is. it may be the onlyway of reaching out. do you know somebody? yes. because nobody else will endorsethat there's a real problem. i'm convinced that mostdoctors know enough about this problem-- exactlyenough about this problem-- to incorrectly tell apatient, you're not leaking.

because they're so familiarwith that postdural puncture headache thing, andthey're so educated that the mri is the endstatement in diagnosis that when they think ofit, and they get the mri and it's normal, they stop. and that then begsthe question-- well, hasn't somebody publishedthat the mri is not such a great tool for this? no.

in fact, just the opposite,because all of the studies that have looked atthe sensitivity of mri for finding thiskind of thing were written by neurosurgeonswho operate at tertiary care centers. you don't get to seethose neurosurgeons and get treated for a leakunless your mri shows a leak. and then they do a caseseries, where they look back at their last 50 patients andthey say, 90% of those patients

had mri evidence of a leak. therefore, the mri mustfind 90% of leaking cases. but that's circular. cases where there is clearmri evidence of a leak get to the neurosurgeon, whothen writes the paper saying, all of my patients hadmri evidence of a leak. what about the people who werereferred for a possible leak that they didn't see becausethey didn't have any imaging evidence that they hadan operable problem?

or what about the people whothey saw, but they didn't operate on because there wasno mri evidence of a leak, so they sent themhome even though they said they had terriblepain when they stood up. it's circular. and it begs the question--so if, in fact, an mri is 90% successfulat finding leaks when they're there, how isit that i have in six months found all these people whocan be improved with a blood

patch, who's mriswere read as negative? and their ct myelograms wereread as not showing a leak. but almost all of themhad something funny. so they had this. or they had that. it wasn't that all theirimaging was stone cold normal. their imaging showed thingsthat you could think, yeah, i could see how that would leak. and showed things that peoplemight even think were a leak.

but their mris were normal. so i've either got to be theluckiest person in the world to find all these peoplewith cts with hard evidence of things that could causeleaks, who nonetheless have mris read by world classradiologists that are normal. if they're normal-- ifthese radiologists are saying the mri is normal,the mri really is normal. it's not that they'renot reading it correctly. it's that it really is normal.

so either i'm theluckiest person in the world that keeps findingpeople who have positive cts and can be fixed withan epidural blood patch, but their mri is normal. or really, mri is not sucha good test after all. and that's the first paperi hope to write about this. when we have enough peoplewho we fix with epidural blood patches, that we canlook back and say, what percentage ofpeople who are fixable

could be detected withan epidural blood patch-- excuse me-- what percentageof people who are fixable could be detected with mri? and that'll provide us witha very different number than looking back at the caseseries of people who i operated on for spinal fluidleaks, but i only operate on people with mrievidence of spinal fluid leaks. different ways oflooking at the world. and if you believe thatthe mri is a good test,

and then you believethat only the people who have mri evidenceare leaking, then you can believe that thisis an uncommon problem. and then you have tocome up with some reason why everybody's getting betterwhen we do epidural blood patches, but theydidn't get better when they were given medicine. and they didn't getbetter when they were given joint injections,or facet joint injections,

or botox injections. it's not just thatthey're the best placebo responders in the world. they got lots of things thatcould have elicited a placebo response but did nothing. they got epiduralblood patches that caused them to get betterand go back to work. one more thing thatmakes me think about it, is every now and then in mythousands of blood patches

i may have done, there wasa couple who never got well. what if they were one of thesepeople-- just like the patient i sent to you-- allit took is that leak. and then all these otherplaces start leaking. and maybe that's whythose were the people we know who had anepidural for a c-section, and they never reallygot better after. what gabriel is referring tois a very interesting case that we have, whichis-- so a woman

presented to him with verystrange neurologic symptoms. she's saying that whenshe tries to read, she can't read becauseall the letters look like they are up and down. she is profoundly fatigued. she has terrible headache,terrible neck pain, but all kinds ofneurological weirdness, too. and she had previouslyhad an intrathecal pump that had been taken out.

and gabriel, quitereasonably, thought, maybe she's leaking from that pump. so she sent them to me. and i looked ather, and i couldn't explain some of her symptoms. but i thought, you knowwhen you're leaking, sometimes you havebrain dysfunction, and that can presentin very strange ways. but i said, you knowwhat, because 30% to 40%

of people who are leakingare leaking-- at least people who are leakingchronically-- are leaking in more than one space. we did a ct myelogram on thatpatient, and what we found was she had profound aneurysmaldilations at multiple nerve roots. which raises the question,was the intrathecal pump put in, in part, because shewas having intractable neck pain and head pain andthings like that?

and he was thinking about a leakfor the right reason-- because of her symptoms and becauseshe had a known incident, a known triggerfor causing a leak. but this may have been someonewho was actually leaking even before the pump was put in. and that's when thingsget really complicated. so what we found is that wedon't have to just patch her where her pump was. we're patching herat other places,

and she's getting better. she's not yet fixed. that's why you don't see thepicture of her with the thumbs up. i only get the picturewith the thumbs up with people who aretelling me that they're fixed. and in the interestof full disclosure, she recently reportedsome residual symptoms. but the proof is in the puddingthat the patient got better.

yeah, the patients. and she's not crazy. yeah. --is getting better. and whether we fix her-- you fixher or not-- that blood patch that you did recently,and she comes in like a different human being,that's not placebo effect. so is the ct myelograma new technology? the ct myelogramis old technology.

and because itinvolves radiation, and because it involvesa needle in the back, people are so afraidto do the ct myelogram. you know what? the ct myelogram showsthose calcium things much better than the mri. because you're actually puttingcontrast into the spinal fluid, you have a much betterchance of seeing an aneurysm of the fecal sac.

because you're stickinga needle in there, you can really actually measurethe spinal fluid pressure. and because you're gettingsome of that spinal fluid, you can look at itfor elevated protein. it is the most underutilizedtest for people who are thinking,could i have a leak, because we're soafraid to send someone to get a needle intheir back one day when they'resuffering every day.

for those people whoare out there who are watching this a yearfrom now, two years from now, three years from now, you cancome find me at the stanford pain management center. and if you're 3,000 milesaway or 6,000 miles away, and you want to askme a simple question, send me an e-mail toic38@stanford.edu. now how can we access this film? you will be able to get thison the health library website.