hi i'm roger michaud at franklin templeton investments we believe that citizens need to be informed about the resources that can help make higher education more affordable that's why we're proud to support programming produced by the caucus educational corporation and their partners in public television new ways for treating epilepsy. next on caucus new jersey funding for this edition of caucus new jersey has been provided by celgene corporation committed to improving the lives of patients worldwide the healthcare foundation of new jersey founded by the jewish community md advantage insurance company of new jersey investors bank berkeley college health republic insurance of new jersey and by new jersey natural gas proud to support education in our communities promotional support provided by commerce magazine and by the record

north jersey's trusted source and north jersey.com [music playing] [music playing] welcome to caucus new jersey i'm steve adubato you know over three million people suffer from epilepsy in the united states today a new procedure it's called laser ablasion is giving patients new reason for hope joining us here in the studio to discuss this groundbreaking procedure we have melissa thomas who used laser ablasion to treat her epilepsy doctor shabbar danish is director of neurosurgery at rwj university hospital doctor kimberly palangio is director of neurophysiology at the university of medical center at princeton and finally liza gundell is deputy director of a terriffic organization called epilepsy foundation of new jersey i want to thank you all for joining us

doctor before you go any further and i'm fascinated to find out melissa's history and why she's doing so great right now what is epilepsy? so epilepsy is a disorder of dysfunctional circuits in the brain and basically you know to try to make it there's a lot of different types of epilepsy but in general it's abnormal electrical discharges from the brain that then manifest themselves in various sort of clinical ways and the thing maybe you can elaborate on that sure so essentially when we talk about epilepsy what we really have to talk about is seizures because epilepsy is really a disorder where you're predisposed to have seizures so seizures originate because the brain normally works through electrical impulses so whenever those electrical impulses can assert in particular part of the brain someone will have a seizure and that generally manifests in a variety of ways you can us consciousness they can have motor

manifestations shaking they can feel abnormal sensations and or change the behavior so anytime that that happens someone will say they had a seizure and just the predisposition for that if you've had that a couple of times we can't figure out why so you have epilepsy you had those seizures abnormal sensations blackouts for how long? about ten years ten years yeah before surgery about ten years okay so they start mm hmm how is it affecting your life? um to be so young and my social life was affected most of course you know going out with friends at the age of 20 you figure when you're 21 22 with the 21 22 college students do you know i was... it affected that social realm of my life carrying medications in my pocketbook having to schedule making sure i took my medicine before class and i'm sure i wasn't alone but it was myself dealing with

it trying to be private about it i didn't want anyone to know cause you drive um in the beginning yes when they started when my medicine started it wasn't working anymore the medicine wasn't working anymore? yeah about maybe two years ago okay maybe about four or five years ago medicine had to keep getting either the dosages had to increase different medicines and i found myself well seizures kept occurring so at that point it was best to just you know my neurologist suggested you know you take away my lisence it could have happened when i'm driving i have a child you know and i you know just being by myself you have a child mm hmm how old? ten wow so the quality... i know that expression quality of life you know your quality of life was severely impacted right? yes how come? very common so as you said in the beginning of our talk that there are over three million people with epilepsy hat's over 130,000 in new jersey alone driving is a huge issue for people new jersey

made a recent change which is a great improvement to the law for driving here in new jersey you used to be have to be seizzure free for a year now it's six months in new jersey which is why is that better? it's better because it's been determined through a lot of research that it's a safe period of time for patients to be able to drive and if they have clearance from their physician they should be able to drive safely within that seizure free period and so you know it's hard if you can't drive in new jersey you can't get to work hmm right so there are lots of implications yeah let's talk about work because we'll talk about laser ablasion in more detail in just a moment but i'm you know it's important for us to get a better understanding of the impact on your life so driving is very challenging school challenging doctor? school and work right? absolutely let's talk about it absolutely and i think now if you're seizures are unpredictable you know how you're set up in school how you get to school how you're in the classroom can be difficult difficult for

you as a patient difficult for the teachers and if you're having compartial complex £ seizures that affect your tension for example it effects how you perform in school jump in yeah i think that you know there's a number of different factors here not only are you not able to pay attention in class these things are going on you know your test scores are gonna drop your performance is gonna drop but also these children you know with bullying that goes on in school no one knows really how to handle seizures you know there's not enough education for other children they don't know what they're looking at they don't know what they're dealing with and you know and kids feel you know isolated almost when they're having these types of events let's talk about parenting cause we're gonna show a couple of pictures of your child mm hmm to what degree does it impact your parenting? at such a young age starting with pregnancy you know the amnial syntesis where usually it occurs with women 35 years and older i had one at 23

with the side effects that it could... birth defects taking medications and it put parenting future parenting now at a hold where you're young by now or want to have two or three kids that after the first one is just okay i have to put it on hold because for the birth defects from the other medications i have now my blackout spells or my partial seizures came with stress sleep disorder... not sleep disorder excuse me lack of sleep and you know you have a baby what sleep are you gonna get yeah right [laughter] you know what sleep are you gonna get right so that became scary and also and my daughter's older now she was witnessing my blackout spells and that's scary for me more for her you know and it becomes so that becomes stressful and you stress with any children at any age sure so and that was setting off my blackout spells let's talk about laser

ablasion doctor what exactly is it i know we use the term minimally invasive what is the difference between laser ablasion versus open surgery? what's the difference? so open surgery is very traditional the access to the brain requires a large incision opening of a window in the skull and then you're manually removing the part of the brain that is seizing and that's been figured out either through imaging or testing and the very traditional way to do the operation it's been done for three decades or four decades at least that way the laser provides a minimally invasive alternative so how the approach is done it still requires a small hole in the brain it's a three milimeter hole three milimeters three milimeters the laser itself... what are we looking at right now some pictures right there okay the laser is about a milimeter and a half wide

and the laser gets implanted to the part of the brain that's been decided that is the focus of the epilepsy or the focus of the seizures but doctor stay right there on that show team that looks like i mean just to the naked eye like a very small opening yes compare that to open surgery? i mean there's no comparison this kind of incision we almost didn't call it an incision cause it gets done with t's a closure of a single stitch where it's opening is... woah woah it's closed with a single stitch? yes and a bandaid? how many stitches would be needed in a typical open surgery situation? i mean we normally don't keep count but somewhere between fifty and a hundred so it's a big difference you had it a laser ablation yes right mm hmm describe your experience a blessing

um going in having a brain surgery on a thursday walking home on a friday and going to work on a tuesday and being seizure free almost for a year now hmm so ten plus years you have the seizures you have a blackout you described the quality of life you go in by the way go on in mm hmm what kind of anxiety apprehension did you have? none what do you mean none? i had no anxiety i had only well when i was giving... well let's just be clear okay [laughter] there are rwj has done 115 of these right? mm hmm how many of these have been done worldwide? 400 okay so 400 of these have been done worldwide and you've got no apprehension i had i just want to be clear [laughter] cause i was looking at my numbers saying does she know something i don't know? i mean... when you have seizures for ten years and you're being told here's an opportunity for you not to have a seizure

it's no guarantee but let's give you an opportunity where you might not have any seizures or they might be minimalized hmm you're giving a chance to live your life seizure free and when i was given the option okay laser ablation didn't even come to as a choice to later on maybe months after i was giving it was all open surgery talk so i were you apprehensive about that? yes i'm picturing myself with thinking metal plates i'm thinking fifty to a hundred stitches i'm thinking off my feet for months i just had a new job i have a child i'm a single mother what am i gonna do who's gonna take care of her how is she gonna get to dance school whatever you know how am i gonna live and then comes i google doctor danash and then this big video comes up how to laser surgery and it was just one day and

then i started asking about that and i was still my family was apprehensive they were? they were you don't know if that's gonna work and what if it doesn't what if it doesn't and if i had a conversation with doctor danash one day 45 minutes on the phone and it was his words were you know we don't stop there if it for some reason if it doesn't work we're not gonna give up on you then there's other options then there might have to be an open surgery then we just keep going hmm so what did you tell your family? i told my family i'm not going to get open surgery [laughter] right now i mean cause at let's do i told my... you said let's do this? let's do this cause there's right we can keep going after that that's a thursday yes you walk out on a friday? yes and i went to work on tuesday [laughter] you went to work on tuesday? yes when was that? april 5th when? about 2013

2013? yes we were doing this program as we enter the spring of 2014 yes how you feeling right now? i'm perfectly fine you've got nothing... symptoms nothing? backups nothing? no i went to cancun in august [laughter] [laughter] and i would have never waited for cancun night [laughter] [laughter] that great so and medication? i'm still on medication one medication was decreased hmm because i was seizure free maybe for about five months after but i don't have a problem with still being on medication knowing that as i'm coming up in a year i'm gonna see my neurologist yeah and we'll take it from there i hope so the one medication that has had a severe birth defect on a child hopefully that being the first to be taken away and had plans what are you hearing right now? i'm hearing hope right so it's a great thing

people with epilepsy today have lots of options for treatment and it's some... this is an incredible option for people to be able to access... and for the foundation right right absolutely so you know we get calls from people every day the number one reason people are calling us is cause they've been diagnosed with epilepsy and they need to figure out what their options are where they can go and what they can do to try to control their seizures yeah but who's a candidate who's not? they're not both of the physicians... who's a candidate? who's not? right so you know when somebody walks in an they have epilepsy we have to decide is this person goinna be better suited on medication or are they better suited for surgery you know because you know surgery's not the first thing you think of when people walk through the door there are so many different options out there now that you know it's a careful process you know and generally 70 percent of patients can be controlled on medication the question is what do we do with that other 30 percent number one and number two is are these medications causing serious side effects? you know if they're controlled with these medications and yet their lives are just horrible because they can't

have children or because it's destroying other organ systems because they're becoming toxic then at that point we have to start thinking about other options such as surgery but here's the thing that's throwing me off i listen to your story mm hmm other people are listening and you know other people are thinking this right now if the and again every case is diferent and because we do so many programs on health and clinical and medical programs we always are like hey listen you gotta do the research you have to talk to your own doctor and we do not advocate anything but we allow people to share their stories but you know there are people right now who heard what you just said and are thinking let me get this straight that this young lady experiences this melissa experiences ten years and then she has this but there are only 400 of these procedures that have taken place so far and 115 of them are taking place at your place. they're saying that doesn't make sense question, doctor, is laser

ablasion being underutilized? so it just got fda approved in mid 2009 so it hasn't been around for that long but still respectfully that's in five years what's going on? the culture of medicine like anything else moves cautiously and you know we were lucky enough to be at the you know at this from the ground up so we were one of the first two or three centers in the country that started this and in fact we didn't start it with epilepsy we started it for another indication and then found out that it was an official.. and then translated it to epilepsy and we weren't the first to do it for epilepsy unfortunately can't take that credit but there was a small group of people around the country who were working to expand the indications for this technology now before we you go out there with a victory flag and say well everybody is you know gonna do well from this we... everybody

gets involved in a research protocol we study it we you know somebody like melissa we watch very closely we look at the images and we try to understand what effect this is having on the epilepsy and to really understand how a procedure is doing for epilepsy takes longer than a month or two it takes a year or two years if you're seizure free in a year we say well about 80 percent chance you're gonna be fine for the rest of your life if you're seizure free two years you say well probably a greater than 90 percent chance that you're gonna be fine and even then it's not a hundred percent so it takes time the fact that four hundred and so have been done around the country only 200 have been done for epilepsy the other 200 have been done for other indications wait a minute the four hundred are for all all comers and only half of those are for epilepsy? that's correct it's also a very long process to get this accomplished because in order to be a candidate for this surgery we have to be very very sure about where your seizures are coming from because we don't want to just

go in there and start you know performing surgery on a part of the brain that isn't actually responsible for that epilepsy so hold on given that reality that melissa had... so melissa was very lucky then to be... she had the right diagnosis nd she had a target in the brain so as doctor palangio was explaining that in order to be a candidate for this using one of the diagnostic tools we have either invasive or non invasive you have to know exactly where that seizure is coming from for this thing to work so then in the effort to be as responsible as we always try to be here on public tv public broadcasting a lot of people out there are suffering from epilepsy we should not be sending the message out there hey if you're suffering from epilepsy you should find out more about laser ablation we should not be sending that message out? we absolutely should be sending the message absolutely have a conversation have a conversation with your doctor and you need to have a

conversation with a doctor who understands epilepsy and understands surgical epilepsy is that what the foundation is doing? it is and you know it's so important for patients to make sure that they're seeing an epilepsy specialist at that time of diagnosis so they're getting the right diagnosis and the right treatment for them are you implying that are you concerned that a significant percentage of those who are suffering from epilepsy are not getting that information? what i'm saying is that the number one time that we get a call from someone with epilepsy is at that initial time they had a first time seizure and they're trying to find the help and information and resources that they need and we want to make sure that we're guiding them to physicians that are specializing in epilepsy so that they can get an accurate diagnosis and treatment method right from the start however there are lots of people who call us who have been well controlled on their medication for a number of years and for some reason might have a breakthrough seizure and then they need to

reconn... a what? a breakthrough so they might be well controlled on medication for a long period of time and then they might start having seizures again and so at that time they may need to they may be being seen by a more general physician and then they might need to conect with somebody who specializes in neurology and epilepsy you want to jump back in doctor? you know i say that for you know patients and or epilepsy specialists even who are non surgeons and neurologists one of the biggest hurdles to you know to treating patients who become refractory under medications is just implanted lifelong fear of open surgery right you say well you know open surgery like when i say... look at the face you just made [laughter] [laughter] 50 to 100 stitches everybody's eyebrows go up even though they're all under the skin everybody says wow that sounds immensely invasive and so the idea of just surgery just brings about these pictures that are horriffic and gruesome and you way well i'm not even going to go talk to the surgeon or i'm not gonna

talk to my neurologist about surgery because there's no way i would even accept that alternative and here we have a procedure that we don't even call surgery anymore. it's a proced... you don't? it's a proced... we just call it a procedure it's a three milimeter hole and patients go home the next day it's a... how do you go home the next day? it's a quicker recovery than gall bladder surgery mm hmm i mean is phenomenal and it's like when i was telling doctor palangio we were having this discussion that you know when you look for things that really are going to impact healthcare and say epilepsy this situation this is a true revolution in surgery absolute revolution well lets talk about the revolution first of all the recovery time is it different is it dramatically shorter doctor? with the laser ablasion surgery yes absolutely describe it so you know as he says you're in one day and you're out the next day

and she's back to work on the tuesday after the thursday surgery open surgeries can lead to complications bleeding complications infectious complications we have to watch for those there's pain with open surgeries you know none of that is really an issue for the most part with this laser ablasion if she had had... if you had had well you weren't going to because you made it clear you weren't doing it yeah [laughter] it was an option but listen if that was your only option it was an option well it became... it was an option where i was going to have a surgery okay so say you did that yeah how long do you think she would have been out of work? weeks weeks? yeah and the other part of that is you know as doctor danish was saying if they had to perform another operation they could do that whereas if somebody goes through this very long procedure and they need something else people are very reluctant to have another procedure because they've gone through the pain they've gone through the weeks of recovery they've gone through all this and at that point they throw their hands up and they just say no more exactly

okay so a couple minutes left folks watching right now we don't know if they're a candidate or not you gotta go to your doctor you gotta get the right information right diagnosis what would you say to folks right now who are suffering? ask questions and before you know it ten years will go by and you're still on medications there's always options ask questions don't let surgery surgery's an option there's a cure... i don't want to say there's a cure [laughter] i take that back but there's a chance at living a normal life and take a chance it's an opportunity i mean there's never don't let the word it's not a guarantee steer you away yeah what do those... by the way what are the guarantees there's not a guarantee of a whole lot in life so i'm curious as to right [laughter] are you supposed to be saying that? doctor aren't you trained to say that right? look absolutely look there's never a guarantee that's been what i tell patients is that if you have a chance

at curing your epilepsy procedures and you can do it through a three milimeter hole why would you not take it? why were you just using the word cure? melissa backed off on using the word cure you just used it you can you can cure epilepsy absolutely you're not gonna back off using that word? no i'm not saying it happens for everybody but it absolutely is possible and so how long has it been for you as we're doing this program we're doing the end of february right mm hmm how long has it been for you right now that you've been seizure free? ten months ten months yeah so at i don't know eighteen months when she is in fact seizure free what's that gonna mean? it's gonna mean she has a greater than 90 percent chance that she will never have a seizure again at two years what's it gonna mean? closer to 100 [laughter] wow final message i would say people with epilepsy need to be good health advocates

they need to advocate for their own healthcare they need to seek out options they need to ask questions so that they can make... take advantage of what's out there in new advances and treatments to control their seizures and hopefully find a cure wow first of all you had trouble getting here today [laughter] you had traffic problems you had car problems yes it is so good that you made it here cause you made this show yes and that's nothing compared to what you've been through no and we wish you nothing but the best [laughter] [laughter] thank you thank you that was great the preceding program has been a production of the caucus educaitonal corporation celebrating 25 years of broadcast excellence and thirteen for wnet njtv and whyy funding for this edition of caucus new jersey has been provided by celgene corporation the healthcare foundation of new jersey md advantage insurance company of new jersey investors bank

berkeley college health republic insurance of new jersey and by new jersey natural gas transportation provided by air brook limousine serving the metropolitan new york new jersey area caucus new jersey has been produced in partnership with tristar studios this healthcare message is brought to you by md advantage insurance company of new jersey choosing a new family doctor can be confusing check with your health insurer to see which physicians near you participate with your plan find out which hospitals the doctor uses and who covers when the doctor is away. and remember to schedule an appointment with your new doctor in advance to fill out any paperwork without the added stress of being sick

captioning sponsored by macneil/lehrer productions >> woodruff: the leader of iraq's kurdish region told u.s. secretary of state john kerry today, "we are facing a new reality and a new iraq," as sunni extremists threaten to bring the country to the breaking point. good evening, i'm judy woodruff. gwen ifill is on assignment. also ahead, a new round of fireworks on capitol hill, over the i.r.s.'s treatment of conservative groups. and the apparent loss of a trove of emails from one of the controversy's central figures. plus, our look back 50 years, to the deeply segregated mississippi of 1964. and the young people who came from around the country that "freedom summer" to lend their hands in the struggle against