second opinionepisode 908 shingles announcer: major funding for"second opinion" is provided by the blue cross andblue shield association, an association of independent,locally operated, and community-based blue cross andblue shield companies. for more than 80 years,blue cross and blue shield companies have offered healthcare coverage in every zip code
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salgo: welcome to "second opinion,"where you get to see first-hand how some of the country'sleading health care professionals tackle healthissues that are important to you.i'm your host, dr. peter salgo, and today i'm happy to welcomeour "second opinion" primary care physician,dr. lisa harris, dr. anne louise oaklander,neurologist from massachusetts general hospital,dr. mark shelly from
university of rochestermedical center, and laurie holmes, who is hereto share her personal story. now, our panelists along withyou at home will be hearing this story for the very first time,so let’s get right to work. laurie, thanks for joining us.thank you. this all began five yearsago. you were on a boating trip withyour husband in canada. holmes: right.
and you were having a greattime. but since you're on a medicalshow, something happened. what was that? well, it began with aheadache. it was very strange and it wasup here in my head and it felt like lightning strikes, is theway i would describe it. and i just didn't feel great. okay. and then i got on the insideof my mouth and my gums on both
sides, it felt like canker soresthat exploded once in a while, and it was just getting worse,so we went to the hospital. in canada. and what did they tell youthere? well, they thought that i hadthe children's disease that is -- you get it in your mouthand your feet. harris: hand, foot, and mouthdisease. hand, foot, and mouthdisease, and they gave me a
pretty heavy narcotic and said,"you'll be okay," and sent me back to the boat. all right, so stopright there. hand, foot, and mouth disease.first of all, it hurts like everything.it's really a bad disease. specifically, you -- and adultscan get it, right? right, rarely, but they can. what are you thinking at thispoint? well, i wasn't thinking hand,foot, and mouth, particularly
not with any lesions on herhands or her feet nor evidence of fever or being aroundchildren, from what she's described.certainly when someone presents initially with that type of ashocking headache, then we start thinking about viral syndromesthat can cause headaches, migraine, and, you know, someother more common things, but she's telling us a couple thingsthat might lead us in a slightly different direction. something else jumped out atme.
we can all join in on this.this pain was severe enough that they gave you some reallypowerful painkillers and then they sent you out the door.would you have done that? oaklander: well, she had lesions, and soi think -- lesions are thosecanker sores. she had sores she describedon her mouth, so i think the differential diagnosis of asevere headache on one side of -- or facial pain on one sideis very different in a patient
who has sores than in a patientwho doesn't have any. shelly: i was wondering, youdescribed it on both sides of your inside of your mouth, butthat was both sides, on one side up and down. one side, up anddown, i'm sorry, up and down. okay, but not across themidline. no, not across the midline. so they put you on narcotics.
yes.i took one and then i didn't take any more because it mademe very sick -- slago: when you say "sick,"what do you mean? sick to my stomach, justnauseous, and it didn't do anything for the headache or thesores in my mouth. then what happened? well, then i got very happy.i started singing, i was -- i was -- my personality changedquite a bit, 'cause i don't
usually sing show tunes, and iwas just happy. i just loved everybody, and igot very sleepy. okay, so let's stop there.now we're hearing something that to me is worrisome.happy patients worry doctors. where's the disconnect here,lisa? well, the concern is that youhave a group of symptoms where someone presents with aheadache, now also has some lesions on one side of theirmouth, and now has personality changes, so you're thinking thatthere's something occurring
within the brain, and that wouldbe immediate emergency room, lumbar puncture -- that's a spinal tap. a spinal tap.i am worried about an infection on the brain. now, what's happening to thelesions all this time? are there more of them, fewer ofthem, what? then i began to get them onthe side of my face, right here on the side of my face.and they were very, very
painful. okay, and, again, you're nottaking narcotics for it. no, because it wasn't doinganything. and, again, i'm struck --you're happy. yeah, i was.in the beginning, i was very happy. laurie, what time period arewe talking about? was all of this during one day,two days, a week? it developed over a week'stime.
a week's time. yes. that's useful to know. and you're on a boat.and i'm on a boat in canada. with your husband. who happens to be a doctor. yes, he is. so what did he do? well, once the lesions camehere, he said, "oh, that's
shingles." shingles. mm-hmm. okay. and? and he put me on medicinethat you use to help the shingles go away. an antiviral medication. all right, what's shingles? it's an infectious diseasethat shows up on the skin, so a
lot of people think it's notserious. they lump it in with poison ivyor eczema, and what they don't realize is that in fact it's aneurologic disease, and a proportion of patients such aslaurie here end up with serious neurologic illness andcomplications. so let's nail a few pointsabout shingles. what's the agent?what causes shingles? well, there's a virus,herpes varicella zoster virus. it's chickenpox.
it's the same one that causeschickenpox, and in the case of shingles, it was there whenthere was chickenpox and stayed silent for a long period oftime. so let me see if i understandthat. you get chickenpox as a kid, andit went away because it's a self-limited disease amongchildren for the most part. but you're telling me the virusdidn't go away. where is it? it stays dormant in a nerveroot and that later on in life
for whatever reason, there'sa -- the guard is let down enough for it to come out andcause lesions along the distribution of that nerve. okay, so shingles is the samevirus that causes chickenpox, which has been hiding out 20,30, 40 -- decades.which is remarkable. just hiding, waitingto cause trouble, and then it's hiding in nerves, so it showsup where the nerves go.
that's correct, wherethe peripheral nerves go. yeah, where theperipheral nerves go. yes, and this is avery characteristic shingles rash.this is the classic shingles rash and it's got some unusualfeatures that are worth knowing about because this disease is socommon, it's estimated that almost half of americans willhave this at some point during their life.so the characteristic of shingles is that unlike mostrashes, it only affects half the
body in almost all patients. doesn't cross themidline. this appearance that you seehere where there's a significant rash, but it stops abruptly aswe get to -- that's the person's belly button in that photothere, and also that it's a localized rash, and so in a way,it's painting what we call a dermatome, the territory of onenerve, which you can see here. now, this is a little one.doesn't look so bad to me. is it a problem?
yes, and so mostpeople who had the first rash would realize something seriousis wrong and would go to an emergency room.the second rash may be more typical, and so it came out in avery large study on the vaccine that was published inthe new england journal of medicine that there are manymore shingles rashes such as this one that are mild,self-limited, the person may not even recognize or theirphysician may not even recognize this as shingles, and so thispatient may not get the
treatment that they urgentlyneed, which can lessen the risk of complications.and there are some people who have shingles and they don'teven have the mild rash, and so i think patients who have -- orpeople who have the syndrome where out of nowhere they'redeveloping pain, odd sensations, tingling, numbness, on one sideof the body, even without a rash, they should still go tothe emergency room, because it's possible that it might be a formthat has no rash or it could be the prodrome, and so the rashmay not have come out yet.
laurie, on a scale ofone to ten, how much did it hurt? ten. that's what i've heard fromeverybody who's had shingles. it hurts. and i think we needto also just throw a little caveat in.not everyone who presents with a shingles rash needs to gorunning for the emergency room. certainly, you know, for most ofthem you can see your primary
care provider within the firstthree or four days. the things that you worry aboutis if it's on the face, if it's around -- in the eye. who gets shingles?who's the typical patient? over 50, caucasian,immunocompromised, so anybody that's had a previous cancer,malignancy, diabetes, anything that suppresses you or affectsyour immune system. now, we say that it's thesame virus that causes chickenpox.let's narrow this one down.
if you've never had chickenpox,can you get shingles? absolutely, because -- explain that. in the u.s., virtuallyeveryone, more than 95% of people by the age of about 25,are seropositive for this virus, meaning that they had it orthat they've encountered it, and thus is at risk for catchingshingles. all right, laurie.you're on a boat. mm-hmm.half your face now is
involved in this rash, and, infact, i think we've got a photograph, we can show yourrash. that's an ouchie. yeah, it was ouchie. it hurts.and now your husband thinks you have shingles, appropriate.he puts you on an antiviral. did you head for shore?holmes: well, no, because we thoughtit was under control with the antiviral, but about two dayslater, it was clear that it
wasn't, because i was sleepingmore and i couldn't walk straight, i couldn't -- but whenyou're on a boat, you can hide that pretty well, and since ithought everything was so funny, i wasn't telling them. if somebody's mental statusis becoming a little loopy, you may not telling people becauseyou're not processing anything. so what happened next? well, the decision was madeto go home, which meant that we had to cross the lake, and whenwe got home, my husband had
already called ahead to see myprimary, and we went in the next morning and she -- her nursetook my blood pressure, which was extremely low, and theysaid, "we're calling an ambulance," but mike said, "no,we'll drive you," and they -- i drove to the emergency room. and what did they tellyou in the emergency room? well, by that time, i hadgotten another headache, a really bad headache.i couldn't have any light. photophobia.right?
so what's going on here? well, yeah, i think that atthis point there's evidence that it's not just involving theskin, but it's gone -- gone, if you will, along the same nerveroots, but going in around the brain and causing some elementof meningitis or encephalitis. meningitis, an inflammationof the lining around the brain, encephalitis, an infection inthe brain itself, both of them nasty. all right, so what doyou do?
i think that at this pointyou have what you need to know, that is varicella zoster you'redealing with, shingles you're dealing with, that it's anencephalopothy, so you're going to go with intravenous therapy.i don't think there's any way you won't image the brain. imaging means get anmri or a ct or -- so to look at thatfrom that standpoint. what are you looking for, bythe way? i'd also do somedirect florescent tests from
one of the lesions itself.i agree with you that the diagnosis is almost certain, butit is worthwhile, i think, putting it into culture. how important, then, is toget treatment going early with this, if you've gotten a virusin the brain? with a virus, we wantto be treating with the antiviral medications whenthere's viral replication, which means early in the disease.later on, when somebody's recovering, there may not bemuch virus and it might not help
much, so the sooner we can getthat started, the better. it sounds like it was started,at least in part, with the oral therapy, but we're going to beusing -- we're going to use much higher doses when we want to getit into the brain. this goes to yourcomment, though, right? it's not just a rash. that's right. it's not just a little skinthing. this is big-time medicine, isn'tit?
it is, and i do think, asmark mentioned, time is of the essence.in the best case, the diagnosis can be made even before the fullblossoming of the rash, and if the patient is started onantivirals, you may be able to abort this whole kind ofillness, so i do think it's important to contact yourphysician or, if need be, to go to an emergency room as soon asthat suspicion comes to you that it might be shingles. and unfortunately,they didn't put that together
when she did go to the emergencyroom. it was pretty clear from theonset that she had, you know, a unilateral headache, unilateralrash in her mouth. you mean the emergencyroom in canada. exactly. that's when sheshould have been started on antivirals and not narcotics. all right, well, how longwere you in the hospital finally, then? five days i think i -- fiveor six days i was in the
hospital. and you felt better afterthat? after the hospital?oh, no. after the first fivedays? oh, no.they sent me home with a line in and they had a nurse come. an intravenous,you mean. yeah, twice a day, and i wason all kinds of medicine, all kinds of medicine.i still had a headache, i was so
weak and so -- i had absolutelyno energy. i couldn't believe how weak iwas. just sitting up would take a lotof energy. i know that our viewers,though, are sitting here and asking the obvious question.chickenpox hiding. the virus is dormant for xnumber of decades. what causes the virus to kickinto high gear again and causes shingles? the most common reason isnormal aging.
the theory is, right,that as you age, your immune system's not quite as good as itwas when you were younger, and what may be holding this virusin check is at least in part your immune system, so that'sone thing. what other things wouldpredispose you to get shingles? well, one of the things wedon't really understand is the ethnic predominance and why wetend to see it more in caucasians than other ethnicgroups. that's not clearly understood.we certainly know that
immunocompromised patients aremuch more likely, so we know that group of patients.we're watching for them. it's the ones that present outof the blue, like laurie did. i was always taught itwas stress, too. stressful events in your life,medical stress -- you've had a bad infection, something, andboop. on occasion, isee zoster come out in the area where a person has had surgeryor trauma, and so that has been described going back more than ahundred years as something that
can then allow the shingles tocome out in that same segment. let's pause for just aminute. i want to sum up what we've beendiscussing, and then we're going to launch back into your story,laurie. shingles is a viral infectionthat can vary in severity. early treatment can shorten theinfection and it can also decrease the chance ofcomplications. so, laurie, five days in thehospital. you went home.as my grandmother would say,
you're feeling shvach. tell me about it.what was it like? i was in bed most of thetime, or in a chair. i still couldn't walk straight.i had trouble thinking through things sometimes.i could get to the thought, but it just seemed it was so slow.it was very frustrating. coming up with words.it was just very frustrating for me. this was a severe case.
now, did they tellyou if you had encephalitis or meningitis or -- encephalitis. encephalitis, that's what itsounds like. and they kept me on lots ofmedicines, and my first doctor said to me that i was lucky, iwas very lucky, that most of the patients that get what i hadwhere i had it end up in the nursing home or dead, and ithought, well, he was being a little dramatic.he wanted me to take this
seriously. was he?was he being dramatic? no, he was being realistic.encephalitis is one of the most severe forms of infection thatpatients can get. there's another very seriousneurologic complication which you didn't get, fortunately, andthat's stroke. many people do not realize thatshingles can also trigger stroke. this is a bad, bad infection.
so you were very lucky. you didn't havegarden-variety shingles. the people who have commonshingles -- that is, a dermatome, that little nervething, a rash, a lot of pain -- how long does that usually taketo just go away? it's veryvariable. there are even people who don'thave severe pain during the rash.most people do, and then the pain improves as the rash healsup.
if the pain lasts more thanthree months after the rash, we call thatpostherpetic neuralgia, or phn. tell me about that.that just sounds bad. well, it is.anything with the word "neuralgia" in it means nervepain, so it's a form of chronic pain that's in the area whereyou had the shingles rash, in and around that area, and withneuralgia, there's underlying nerve damage and the pain can goon and last for months, for years, occasionally for therest of your life.
now, as i understandthe mechanism of that, tell me if i'm wrong, but at least onetheory is that the mechanism in the nerve to regulate whetherit's on or off and cause pain or not cause pain, that mechanismgets damaged and the off switch goes away. well, when the shinglesbreaks out, that nerve does scar, and so that essentiallythere's nerve damage that's happening at that point, and thequestion is whether or not it'll be left still perceiving a lotof the pain that's there.
narcotics don't workvery well on it, do they? nerve pain is hard to blockout. i wanted to say that the rashusually lasts for about two weeks, you know, that somewherein there it'll come on in about a week and it starts going awayin a week, it crusts and gradually comes off.but what you're left with is the sensation of the pain in thatarea. the other thing toreally point out is that while people are breaking out in thoserashes, they are contagious,
so if you're exposing people whohave not had chickenpox, particularly infants and otherimmunocompromised folks, they're chickenpox. but there arepeople who should be around people who have shingles orchickenpox, and that's adults our age, because it turns outthat one of the ways that our body keeps this suppressed is byexposure to this virus again, like a booster, and so forpeople our age, being exposed to someone with shingles orchickenpox can actually lessen
the chances that we'll get itourselves. now, that brings up a realinteresting point, because there is a vaccine for shingles, andit sounds as if the vaccine's acting in the same way that yousay natural exposure to more zoster virus would be acting.is that fairly accurate? shelly; well, when you're getting avaccine, you're getting it injected, and so you're beingexposed in a more significant way.it turns out that compared to
chickenpox, zoster's minimallycontagious, if you will, because it's often on a torso, coveredwith clothing. looks gross, so it's hidden fromthat standpoint. so for that point, there's not alot of transmission, even though we know if you really try to,you can transmit it. with the injection, you'rereally getting a huge jolt to the immune system, saying, "thisis what you want to remember not to let out." so, natural exposure,good, vaccine, better.
much better. now, i know the vaccine hasbeen recommended for people 60 years and older, now maybe foryounger people? 50 years andolder. yeah, they've moved itdown ten years. they really did, and certainpeople who are in high-risk groups, which we discussedbefore, may even need to be immunized under the age of 50. and the vaccine is,what?
it is basically the chickenpoxvaccine, is it not? or is it different? it's a weakenedstrain. it's a live virus, it's aweakened strain. it is a more concentratedversion of the varicella vaccine that's given to children in twodifferent forms, but it's basically ten -- two to tentimes as much actual virus to wake up the immune system atthat point. and although thisvaccine exists and you would not
like to get shingles -- and, bythe way, we didn't even talk about eye injury, because if youget shingles around your eyes, it can cause blindness. you don’tt want shingles, andthe vaccine has basically been -- really been shown to beharmless. local side effects at theinjection site. that's about it, right? yet people aren't getting it. it's a big problem in publichealth, because this vaccine,
which is a wonderful advance ofmodern medicine, highly effective at preventing thisserious neurologic disease, not enough people are getting it. the point is, what,50% reduction in shingles altogether, and if you getshingles, it's much less severe if you've had the vaccine. the milder the case, the lesslikely you are to be left with postherpetic neuralgia. how bad was it?
well, i stillhave it -- i still take neurontin daily. oh, boy.i have cut down on the amount that i take, but when it getsbad, it's like having a horrible toothache, and then, like, whenyou get -- you go to the dentist and you get the shots so you canhave your teeth operated on, and then when it wears off, thattingling. it just -- it's -- and neurontin isspecific for neuralgia.
and it works -- itreally works. if i take it -- so one of thethings you don't want to do is cut down your dose, because youreally have to maintain the -- and it's very high dose ofneurontin when you're talking about chronic pain syndrome,and oftentimes, people will be underdosed at 300, 600milligrams a day, and we're talking about 1,800 to 2,700milligrams a day to really prevent the chronic pain of theneuropathy, so...
all right.let's pause for a minute again. let's sum up where we've beenand then we can launch back into our discussion.while shingles is not necessarily life-threatening, itcan cause life-threatening complications and alsopostherpetic neuralgia, which can leave you in pain for manyyears. the best way to prevent evergetting shingles is to get the shingles vaccine.it works, very few side effects. makes sense to me.laurie, how are you doing now?
i know you've got the pain.you say it's getting less? well, it's under control.if i take my neurontin and i don't get over-tired, it'sokay. i always feel the tingling. i'm sorry, you still have thetingling. yeah. and you're five years out. they've told me i'll probablyalways have it. actually, inalmost all cases, it continues
to improve over time, so givenyour relative youth, i think that you probably will continueto improve to the point where it's not a major issue for you,but as we can see, it's taken years. now, you're back atwork, right? holames: yeah, i just -- i'm afighter. i was bound and determined i wasgoing to get back to work, and i did.
well, that's justgreat. i'm so glad you joined us heretoday. it's not easy to come up andtalk to a television audience about your virus in your mouthand the pain you still have. i thank all of you for joiningus as well, and as you may have guessed from this kind ofsummation, we're out of time, but i hope you continue theconversation on our website. there you're going to find theentire video of this show as well as the transcript and linksto resources.
the address is...thanks for watching. thank you again, all of you, forbeing here. i'm dr. peter salgo.i'll see you next time for another "second opinion." the blue cross and blue shieldassociation's mission is to make
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