Children’s Epilepsy Surgery Service (CESS) in England

epilepsy.org.ukEpilepsy Helpline: 0808 800 5050

Children’s Epilepsy Surgery Service (CESS) in England2

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Children’s Epilepsy Surgery Service (CESS) in England 3

ContentsIntroduction 4

TheCESScentres 5

IfyouliveinNorthernIreland,ScotlandorWales 5

AbouttheCESS 6

ReferraltoaCESScentre 8

Testsbeforeepilepsybrainsurgery 10

Informationaboutthetests 10

Typesofepilepsybrainsurgery 15

Whathappensduringepilepsybrainsurgery 18

Afterepilepsybrainsurgery 18

Leavinghospital 19

Successratesforepilepsybrainsurgery 21

Benefitsandrisks 21

ContactdetailsfortheCESScentres 24

Firstaidfortonic-clonicseizures 26

Firstaidforfocal(partial)seizures 27

Furtherinformation 28

Children’s Epilepsy Surgery Service (CESS) in England4

IntroductionInEngland,around340childreneachyearcouldbenefitfromepilepsybrainsurgery.However,inrecentyears,onlyaround110children each year have had surgery on their brain to try to treat their epilepsy. Epilepsy brain surgery is done to help stop a child’sseizures,orreducethenumberofseizurestheyhave.

SinceNovember2012,followingasuccessfulcampaignbyEpilepsyAction,anewChildren’sEpilepsySurgeryService(CESS)hasbeenprovidingepilepsybrainsurgeryformanymorechildreninEngland.Forchildrenagedfiveyearsandunder,thissurgeryisdoneatoneoffourspecialistCESScentres.Forchildrenagedsixyearsandover,surgerymaybedoneataCESScentre,orlocally.

Thisinformationgivesanoverviewofwhatisinvolvedbefore,during and after epilepsy brain surgery. If you have already been toldthatsurgerycouldhelpyourchild,theCESScentrewillbeabletogiveyoumoreinformation,andansweranyquestionsyou have.

EpilepsyAction’sonlinecommunity,forum4e(forum4e.com)hassomememberswhohavehadepilepsysurgery.Theywillbeabletosharetheirexperiencesofwhattoexpectwhensurgeryisbeing considered.

Further information on many of the different aspects of epilepsy mentionedinthisbookletisavailablefromEpilepsyAction.Seepage31forcontactdetails.

Children’s Epilepsy Surgery Service (CESS) in England 5

The CESS centres• BirminghamChildren’sHospitalNHSFoundationTrust• NorthBristolNHSTrust,transferringtoUniversityHospitals

BristolNHSFoundationTrustduring2014• GreatOrmondStreetHospitalforChildrenNHSFoundation

TrustandKing’sCollegeHospitalNHSFoundationTrust,London

• AlderHeyChildren’sNHSFoundationTrust(Liverpool)withCentralManchesterUniversityHospitalsNHSFoundationTrust

ThefourcentreswilltreatchildrenfromalloverEngland,notjustthoseintheirlocalarea.Contactdetailsareonpage24.

If you live in Northern Ireland, Scotland or WalesTheCESSisfundedbyNHSEnglandandisthereforeaserviceforchildrenlivinginEngland.IfyouliveinNorthernIreland,ScotlandorWalesandyourchildisbeingconsideredforepilepsybrainsurgery,thereareanumberofoptionsastowheretheymight be referred. Your child’s epilepsy specialist will discuss this with you.

Whereveryourchildisreferredforepilepsybrainsurgery,theinformationinthisbookletaboutwhatisinvolvedbefore,duringand after surgery will still be relevant for you.

Children’s Epilepsy Surgery Service (CESS) in England6

About the CESSTheCESSaimstoimprovethequalityofepilepsybrainsurgeryforchildren.Italsoaimstoreviewmorechildren,toseeiftheywouldbenefitfromepilepsysurgery.Allchildrenbeingconsidered for epilepsy brain surgery will be assessed by the CESS.TheymaygoontohavesurgeryataCESScentre.OrtheCESScentremayadvisethattheyshouldhavethesurgerylocally.

EachCESScentrehasanexpertteamofsurgeons,doctors,healthcareprofessionals,andspecialistfacilitiesneededforepilepsy brain surgery.

Thecentrewillmakesureyouandyourchildhaveaccesstosupportandservices,aslistedbelow.Thisincludesduringtheassessment,whenyourchildgoesinforsurgery,andaftertheirsurgery.

Children’s Epilepsy Surgery Service (CESS) in England 7

Support and services

• A chance to visit the centre and meet the team who would dotheoperation,beforethesurgerytakesplace

• Supportforyourfamilyfortheperiodyourchildwouldbeinhospital.Thisshouldbeinachild-friendlyenvironmentwithtoys,booksandactivitiesthatarerightforyourchild

• Amanagementplan,tobeagreedwithyouandyourchild,andsharedwithyouboth,onanongoingbasis.Thisplanwillincludedetailsaboutyourchild’sfollow-upcare,andthemonitoring and review process

• A named lead doctor or healthcare professional responsible forcoordinatingyourchild’scare.Theywillactasalinkbetween you and the people treating your child

• 24hoursadayaccesstoamemberoftheteamforadvice,information and support

• Access to an epilepsy specialist nurse• Clearinformationaboutyourchild’scondition,whichshould

include• A description of their epilepsy• How their epilepsy will be managed• Medicinesandothertreatmentstheymightreceive• How you and your child can get the best from their

treatment • Emotional and behavioural support • Information about appropriate patient support groups

and charities • Contactdetailsofyourchild’snamednurse

Children’s Epilepsy Surgery Service (CESS) in England8

Referral to a CESS centreTheNationalInstituteforHealthandCareExcellence(NICE)isthe independent organisation responsible for providing national guidanceontreatmentsandcareforpeopleusingtheNHSinEnglandandWales.Theguidanceistohelphealthcareprofessionals,patientsandtheircarersmakedecisionsabouttreatmentandhealthcare.NICEsaysthatchildrenwithepilepsyshould have regular reviews of their epilepsy and treatment.

Children’s Epilepsy Surgery Service (CESS) in England 9

Whenyourchildhastheirepilepsyreview,oriftheyarehavingproblemswiththeirepilepsyatanyothertime,theymaybereferredtoaCESScentre.Atthispoint,theymaybeconsideredforepilepsybrainsurgery.Tobereferred,theywouldneedtobein one of the groups mentioned below. • Childrenwithsevereepilepsythatstartedinthefirstfew

yearsoflife,andwhichisthoughttocomefromonepartofthe brain

• Childrenwithepilepsywhereamagneticresonanceimaging(MRI)brainscanhasshownanabnormalityinoneormorepartsofthebrain.Theseabnormalitiescouldincludebenigntumours,andhypothalamichamartomas

• Childrenwithfocalepilepsy(alsocalledpartialepilepsy)thathasnotbeencontrolledwithtwoepilepsymedicines.Thesemedicinescouldhavebeenusedsinglyortogether.Thesechildrenmay,ormaynot,haveanabnormalityonanMRIscan

• Childrenwithaweaknessdownonesideofthebodyandepilepsy that has not been controlled with two epilepsy medicines,usedeithersinglyortogether.Aone-sidedweakness is called hemiplegia

• ChildrenwithSturge-WebersyndromeorRasmussen’ssyndrome

• Childrenwithdropattacks• Childrenwithtuberoussclerosiswithepilepsythathasnot

beencontrolledbytwoepilepsymedicines,usedeithersinglyor together

Children’s Epilepsy Surgery Service (CESS) in England10

Tests before epilepsy brain surgeryTofindoutifyourchildwouldbesuitableforsurgery,theepilepsyspecialist,andanumberofotherspecialistsattheCESScentre,wouldthoroughlyassessthem.Attheendoftheassessment,theCESScentrewouldadviseifsurgeryispossible,and also recommend where it should take place.

Aspartoftheassessment,theywouldaskyourchildtohaveanumberoftests.Thesemayincludesomeofthefollowing.• Electroencephalogram(EEG)/videotelemetry• Computedtomography(CTscan)• Magneticresonanceimaging(MRIscan)• FunctionalMRIscan(fMRI)• Positronemissiontomography(PETscan)• Single-photonemissioncomputedtomography(SPECTscan)• Magnetoencephalography(MEGscan)• Neuropsychologytests• Neuropsychiatrytests

Information about the testsYou will want to know more about what the various tests involve. Whatfollowsissomebriefinformation.Yourchild’spaediatrician,orstaffwhereyourchildisgoingfortests,shouldbeabletogiveyou more detailed information.

Electroencephalogram (EEG)/video telemetry

TheEEGtellsdoctorsabouttheelectricalactivityinthebrain.DuringtheEEG,atechnicianplacesharmlesselectrodesonthe

Children’s Epilepsy Surgery Service (CESS) in England 11

scalp,usingaspecialglueorstickytape.TheelectrodesarethenconnectedtotheEEGmachine,whichrecordstheelectricalsignals in the brain on a computer.

Invideotelemetry,avideorecordingisdoneatthesametimeasanEEG.Thismeansthatifyourchildhasaseizure,doctorscanseeexactlywhathappens.AnEEG/videotelemetrycanbedonewhileyourchildisawakeorasleep,orboth.

Computed tomography (CT scan)

ThisisatypeofX-raythatshowsthestructureofthebrain.Itwouldn’tshowifyourchildhasepilepsy.However,itmightshowifthereisanabnormalitythatcouldcauseepilepsy.CTisnowanoldinvestigation,whichhasmostlybeenreplacedwithmagneticresonanceimaging(MRIscan).

Magnetic resonance imaging (MRI scan)

TheMRIusesradiowavesandamagneticfield,ratherthanX-rays.Itcanshowifthere’sastructuralcauseforsomeone’sepilepsy.TheMRIismorepowerfulthantheCTscanner,soitcanpickupsmallorsubtleabnormalitiesthattheCTscannercan’tfind (seeabove).

Functional MRI scan (fMRI scan)

ThisworksinasimilarwaytoanMRIscanbut,duringthescan,yourchildwouldbeaskedtodosomething.Forexample,theymightbeaskedtotaptheirthumbagainsttheirfingers.Ortheymaybeaskedtolookatpictures,oranswerquestions,ona

Children’s Epilepsy Surgery Service (CESS) in England12

computerscreen.Theseactivitiesincreasetheflowofoxygen-richbloodtoaparticularpartofthebrain.ThistypeofMRIscanwillhelptoshowexactlywhichpartofthebrainmanagesimportanttaskssuchasthought,speech,movement,andsensation.

Positron emission tomography (PET scan)

Thisscanusesaradioactivesubstance,calledatracer,tolookfor information about how the brain is working. It can also show any abnormalities.

Single-photon emission computed tomography (SPECT scan)

Thisscanshowsdifferentpartsofthebrainindifferentcolours.Yourchildwouldbegivenaninjectionofaradioactivedye,whichwouldgototheirbrain.Thedifferentcoloursshowhowmuchbloodflowisineachpartofthebrain.Usually,bloodflowishigherinthepartofthebrainwhereseizuresstart.TherearetwosortsofSPECTscans.Oneistheinter-ictalSPECTscan,which is done between a child’s seizures. ‘Inter’ means between and‘ictal’referstoaseizure.TheotheristheictalSPECTscan,which is done just after a child has had a seizure.

Magnetoencephalography (MEG scan)

Thisisanewtypeofscan,andisonlyavailableinveryspecialcircumstances.Thescannerwouldsitoutsideyourchild’sheadand measure their brain activity. It can tell which parts of a child’s brain are active during a certain task.

Children’s Epilepsy Surgery Service (CESS) in England 13

Children’s Epilepsy Surgery Service (CESS) in England14

Neuropsychology tests

Thesetestswouldshowifyourchildhasanymemoryandlearningproblems.Thetestsmaytakeuptoeighthours,splitintodifferentsessions,andinvolveanumberofgamesandpuzzles.Theycanshowwhetherthepartofthebrainthatwillbe operated on is responsible for any functions that other parts oftheirbraincan’ttakeover.Thisistotrytomakesureyourchild would not have problems after surgery that they didn’t have before.

Neuropsychiatry tests

Apsychiatristwithexperienceofepilepsybrainsurgerywouldseeyouandyourchild,aspartoftheinitialassessment.Emotional and behavioural problems are common in children withepilepsy.Becauseofthis,thepsychiatristwouldconsiderwhetheryourchildhasthesetypesofproblems.Theywouldalso be able to suggest any treatment your child might need for theseproblems.Thistreatmentwouldbeavailable,whetherornot your child goes on to have surgery.

Thepsychiatristwouldalsobeoneofthepeoplewhocheckswithyouandyourchildwhatyouraimsandexpectationsarefor surgery.

Other assessments

Othertypesofassessmentmightbeorganised,dependingonthetypeofepilepsy,andthetypeofproblems,yourchildhas.

Children’s Epilepsy Surgery Service (CESS) in England 15

Thesemayincludethefollowing.• Speechandlanguage• Development • Vision,particularlyperipheralvision• Theneedforoccupationaltherapy• Theneedforphysiotherapy

Types of epilepsy brain surgery Therearemanydifferenttypesofepilepsybrainsurgery.Thetypeyourchildmighthavedependsontheirtypeofseizures,and where the seizures begin in their brain. Here are some of the most commonly performed types of epilepsy surgery.

Focal resection

Thisisdonewhensurgeonsaresurewhichpartofthebraintheseizuresstartin.Childrenhavingthistypeofsurgeryhavea

Children’s Epilepsy Surgery Service (CESS) in England16

small part of their brain removed. Although this sounds worrying,thesurgeonwouldonlytakeawaydamagedpartsthataren’t needed. If the part of the brain causing the seizures is in thetemporallobe,thesurgeryiscalledatemporalresection.Ifthe part of the brain causing the seizures is in one of the other lobes,itisanextra-temporalresection.

Multiple subpial transection

Thissurgeryisnotverycommon,butisperformedwhenit’snotpossible to remove the part of the brain that’s causing the seizures.Thesurgeonwillmakeaseriesofcutstoseparatethedamagedpartofthebrainfromthesurroundingarea.Thisstopsseizures moving from one part of the brain to other parts.

Corpus callosotomy

Thissurgeryseparatesthetwohemispheres(halves)ofthebrain.Itismainlyusedforgeneralisedseizures,particularlyfrequentdrop attacks. It is sometimes used for myoclonic seizures that affect the whole body. It is also sometimes used for severe focal seizures that start in one hemisphere and spread to the other.

Hemispherectomy/Hemispherotomy

Thisismajorsurgerytoseparate,orremove,onehalfoftheouter layer of the brain from the other. It is performed in children who have seizures because one half of their brain is badlydamagedornotworkingproperly.Sometimesthehemisphereisnotremoved,butcompletelydisconnectedfromtherestofthebrain.Thisiscalled‘hemispherotomy’.

Children’s Epilepsy Surgery Service (CESS) in England 17

Children’s Epilepsy Surgery Service (CESS) in England18

What happens during epilepsy brain surgeryWhathappensduringbrainsurgeryforepilepsywilldependonthetypeofsurgery.Mostsurgeryinvolvesmakingasmallopeningintheskulltogettothebrain.Thesurgeonmayremove some bone.

Childrenareputtosleepwithageneralanaesthetic.Onrareoccasions,thesurgeonmaywakethechildupduringpartoftheoperation.Thisissotheycanfindthepartofthebrainthatcontrolslanguageandmovement.Thesurgeonwouldexplainthistothechild.Wakingchildrenupduringtheoperationisonlyusuallydoneinchildrenolderthan12years.Afterthesurgery,theboneisreplacedandfixedtotheskullforhealing.

Mostepilepsybrainsurgerytakesatleastfourtosixhours.

After epilepsy brain surgeryAftersurgery,yourchild’sheadandfacewouldbeswollenandpainful,andtheywouldneedtotakepainkillersforafewdays.Thepainandswellingshouldsettleafterafewdays,oraweekor two.

Yourchildwouldneedtorestandrelaxinthefirstfewweeksafterthesurgery,andgraduallybecomemoreactive.It’susualforchildren to stay off school for around two to three months. Childrenshouldnotplayanycontactsportsforaboutfourtosixmonths.

Children’s Epilepsy Surgery Service (CESS) in England 19

Leaving hospitalOnceyourchildleaveshospital,theircarewillbesharedbetweentheCESScentreandthedoctorwhoreferredthemforsurgery.Ifyourchildhassurgerylocally,therewillbeanagreedplanwiththeCESSaboutyourchild’sfollow-upcare.

Generally,childrencontinuetotakeepilepsymedicineforbetweensixmonthsandtwoyearsaftertheepilepsysurgery.Theexactlengthoftimewillvary,dependingonwhetheryourchild has stopped having seizures completely. It will also depend on what you and your child’s epilepsy specialist think is best for yourchild.Theymaybeabletoreduce,orevenstopthemedicine after a while. If your child’s epilepsy medicine does needreducing,theirdoctorwilltellyouhowtodothis.Theywill also keep in regular contact with you during this process.

Your child will have a follow-up appointment with their healthcareteamtocheckontheirprogressaftersurgery.Theteamwillkeepintouch,toseehowyourchildisdoing,possibly for several years. If your child needs any further development,emotionalorbehaviouralassessments,theywillarrangethese.Thehealthcareteamwillalsostayincontactwithyou,tomakesureyourchildiswell,andthatanylocalservices they need are made available.

Children’s Epilepsy Surgery Service (CESS) in England20

Children’s Epilepsy Surgery Service (CESS) in England 21

Success rates for epilepsy brain surgeryThesuccessratedependsonthetypeofsurgery.Manychildrenstop having seizures after epilepsy surgery. If they do still have seizures,theyusuallyhavealotfewerthanbefore.Ifseizurescontinue,mostchildrenwillusuallycontinuetotaketheirepilepsymedicine.Childrenwhohaveatemporalresectionusuallydobetterthanthosewhohaveanextra-temporalresection.(See Focal resectiononpage15.)

Benefits and risksAlthough the tests before epilepsy brain surgery are very thorough,it’sstillnotalwayspossibletopredictwhattherisksareforeachchild.However,thetestresultswillhelpthedoctorsdecidewhethertorecommendsurgeryforyourchild.Theywillbe able to discuss this with you fully before any decision about surgery is made.

Doctors will only go ahead with epilepsy brain surgery if the testsshowthatthebenefitsarelikelytobehigherthantheriskofcomplications.Therisksdependonthetypeofepilepsybrainsurgery. Here are some possible risks.

Memory problems

Thetemporallobeshandlememoryandlanguage.Thismeansthatanysurgeryonthetemporallobescancausedifficultiesinremembering,understandingandspeaking.Thememoryproblemscanbeforthingsthatachildhasseen(‘visualmemory’)orforthingsthatachildhasheard(‘verbalmemory’).

Children’s Epilepsy Surgery Service (CESS) in England22

More seizures than before

Cuttingtheconnectionsbetweenthetwohemispheres(sides)of the brain in corpus callosotomy stops seizures spreading from onehemispheretotheother.However,itdoesn’tstopalltheseizures,onlythedropattacks.Infact,somechildrenmayhavemorefocal(partial)seizures,buttheyarelesssevere.

Visual symptoms

Afterhemispherectomy(wheretheouterlayerofonehalfofthebrainisremoved),achild’svisionmaybereducedortheymayhavedoublevision. Thisisusuallytemporary.Theymayalsohavesomedifficultieswiththeirperipheralvision.Thismaybetemporary or permanent and will depend on how much of the brain has been removed.

One-sided paralysis

Afterhemispherectomy(wheretheouterlayerofonehalfofthebrainisremoved),achildmayhavelimiteduseofonesideoftheirbody.Thisone-sidedparalysisiscalledahemiparesisorhemiplegia. Physiotherapy and occupational therapy can help with this.

Behavioural problems

Somechildrenmayhavehadbehaviouralproblemsbeforethesurgery.Ortheymayhavehadproblemscommunicatingorrelating to other people. Epilepsy surgery itself will probably not help these problems. It is even possible that in a very few children,theseproblemsmaybecomealittleworse.

Children’s Epilepsy Surgery Service (CESS) in England 23

Children’s Epilepsy Surgery Service (CESS) in England24

Contact details for the CESS centresBirminghamChildren’sHospital

NHSFoundationTrustSteelhouseLaneBirminghamB46NHTel:01213339999Website:bch.nhs.uk

NorthBristolNHSTrustFrenchay HospitalFrenchay Park RoadBristolBS161LETel:01179701212Website:nbt.nhs.ukTransferringtoUniversityHospitalsBristolNHSFoundationTrustduring2014.Thephonenumberwillchangeto01173420185.

GreatOrmondStreetHospitalforChildrenNHSFoundationTrust

GreatOrmondStreetLondonWC1N3JHTel:02074059200Website:gosh.nhs.uk

King’sCollegeHospitalNHSFoundationTrust

Denmark HillLondonSE59RSTel:02032999000Website:kch.nhs.uk

AlderHeyChildren’sNHSFoundationTrust

Eaton RoadWestDerbyLiverpoolL122APTel:01512284811Website:alderhey.co.uk

CentralManchesterUniversityHospitalsNHSFoundationTrust

RoyalManchesterChildren’sHospital

Hathersage Road ManchesterM130JHTel:01612761234Website:cmft.nhs.uk

Children’s Epilepsy Surgery Service (CESS) in England 25

About this publicationThisbookletiswrittenbyEpilepsyAction’sadviceandinformationteam,withguidanceandinputfrompeoplelivingwithepilepsyandmedicalexperts.Ifyouwouldliketoknowwhereourinformationisfrom,orthereisanythingyouwouldliketosayaboutthebooklet,pleasecontactus.

Epilepsy Action makes every effort to ensure the accuracy of information in its publications but cannot be held liable for any actions taken based on this information.

Date:May2013;Dueforreview:May2015;Code:B157.01

AcknowledgementsEpilepsyActionwishestothankDrRichardAppleton,consultantpaediatricneurologistatLiverpool’sAlderHeyChildren’sHospital,forhiscontribution.DrAppletonhasdeclarednoconflictofinterest.

First aid for tonic-clonic seizuresThepersongoesstiff,losesconsciousnessandfallstothefloor.

Do... • Protectthepersonfrominjury(removeharmfulobjectsfromnearby) • Cushiontheirhead• Aid breathing by gently placing the person in the recovery position

whentheseizure hasfinished(seethepictures)• Staywiththemuntilrecoveryiscomplete• Be calmly reassuring

Don’t... • Restrain the person’s movements • Put anything in their mouth  • Trytomovethemunlesstheyareindanger • Give them anything to eat or drink until they are fully recovered  • Attempt to bring them round

Call 999 for an ambulance if... • Youknowitistheperson’sfirstseizure• Theseizurecontinuesformorethanfiveminutes• Oneseizurefollowsanotherwithoutthepersonregaining

consciousness between seizures• Thepersonisinjured• You believe the person needs urgent medical attention  

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1

2

3

First aid for focal (partial) seizuresThepersonisnotawareoftheirsurroundingsorofwhattheyaredoing.Theymaypluckattheirclothes,smacktheirlips,swallowrepeatedlyorwander around.

Do... • Guide the person away from danger • Staywiththepersonuntilrecoveryiscomplete• Be calmly reassuring  • Explainanythingthattheymayhavemissed 

Don’t... • Restrain the person  • Actinawaythatcouldfrightenthem,suchasmakingabrupt

movements or shouting at them  • Assumethepersonisawareofwhatishappening,orwhathas

happened  • Give them anything to eat or drink until they are fully recovered  • Attempt to bring them round

Call 999 for an ambulance if... • Youknowitistheperson’sfirstseizure• Theseizurecontinuesformorethanfiveminutes• Thepersonisinjured• You believe the person needs urgent medical attention

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Children’s Epilepsy Surgery Service (CESS) in England28

Further informationIfyouhaveanyquestionsaboutepilepsy,pleasecontacttheEpilepsy Helpline.

Epilepsy Action has a wide range of publications about many different aspects of epilepsy. Information is available in the followingformats:booklets,factsheets,posters,booksandDVDs.

Informationisalsoavailableinlargetext.

Please contact Epilepsy Action to request your free information catalogue.

Epilepsy Action’s support servicesLocal meetings: a number of local branches offer support acrossEngland,NorthernIrelandandWales.

forum4e: our online community is for people with epilepsy and carersofpeoplewithepilepsy.Forpeopleaged16yearsorover.Joinatwww.forum4e.com

Epilepsy awareness: Epilepsy Action has a number of trained volunteers who deliver epilepsy awareness sessions to any organisationthatwouldliketolearnmoreaboutepilepsy.Thevolunteers are able to offer a comprehensive introduction to epilepsy to a range of audiences.

Ifyouwouldlikemoreinformationaboutanyoftheseservices,pleasecontactEpilepsyAction.Contactdetailsareatthebackofthis booklet.

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