SCI First 90 Days

9FIR0STSPINAL CORD INJURYDAYS by Sam Maddox

C M Y CM MY CYCMY K

Demonstrate your commitment to quality. Highlight the quality services that you provide for people with spinal cord injuries. You have quality practices in place to ensure optimal outcomes. Accreditation is the next step in growing your organization by demonstrating your person-centered focus and your commitment to continuous quality improvement. CARF is a leading independent, nonpro t accreditor of health and human services, with accredited spinal cord injury specialty programs in the United States, Europe, and the Middle East. Our accreditationcovers the continuum of services o ered to individuals with spinal cord injuries in a variety of treatment settings. CARF is internationally recognized for its consultative external peer-review process and evolving eld-driven standards. For 50 years, the CARF seal has been the hallmark of quality in person-centered services.About CARF: Benefits of CARF accreditation:I Accredits programs internationally I Service excellenceI Reviews business and clinical practices I Business improvementI Guides person-centered, evidence-based practices I Funding accessI Establishes quality performance improvement systems I Competitive differentiationI Hosts training and education on standards I Risk management I Positive visibility Snap the QR code or visit I Accountability www.carf.org/Programs/Medical I Peer networking for full program descriptions.To learn more about CARF and how accreditation canhelp your organization, please email Chris MacDonell at [email protected] or call (888) 281-6531.

Healing and Hope. This Is Your Hospital.For nearly 40 years, St. Jude Centers forRehabilitation has been a leader inmaximizing the recovery and independenceof people with spinal cord injuries. Froma highly-respected inpatient programto one of the most innovative array ofoutpatient services, we offer the entirecontinuum of care—allowing you to healphysically, medically and emotionally.St. Jude Centers for Rehabilitation101 E Valencia Mesa Dr.Fullerton, CA 92835(714) 447-6405stjudemedicalcenter.org

9FIR0STSPINAL CORD INJURYDAYS by Sam Maddox

SPINAL CORD INJURY: FIRST 90 DAYSby Sam Maddox©2017 by First 90 Days, all rights reserved including the rightsto ­reproduce this book or portions thereof in any form whatso-ever except as provided by United States Copyright Law.Book design: George KentonDisclaimer: The material contained in this book is presented forthe purpose of educating and informing readers about s­ pinalcord injury. Nothing contained herein should be construedas medical ­diagnosis or treatment advice. Information in thisbook should not be used in place of the advice of a physicianor ­qualified health care provider. Users should never disregardprofessional medical advice or delay in seeking it because ofsomething presented in this book.This book does not recommend or e­ ndorse any specific tests,drugs, products, or procedures mentioned in the text.For additional copies of this book:SCI: First 90 Daysdownload at scifirst90days.comContact: [email protected] SCI Hotline: 213-797-0304 iv

ACKNOWLEDGMENTSS pinal cord injury is an equal ­opportunity villain. It doesn’t care what kind of car you wrecked, or whether you jumped or got pushed. SCI could care less if you’re young or old, hip or square, mean or nice. W­ elcome to the least exclusive club nobody ever thought about joining. It’s a long way from your comfort zone, yes? Untethered, and totally unpreparedfor all this drama? How could you not be. There’s too much happening, toofast: life and death medicine, rehab and recovery, prepping to go home, findingways to pay for it, figuring out how to live with it. This book won’t make the anxiety disappear but it can help you processit. SCI: The First 90 Days offers resources and connections to sort through themadness so you can make informed choices for the long-run. It will take time butyou will get your bearings. It will take even more time, but you will also find waysto calm the turbulence in your head. For newbies in the club, there’s no denying that you have hit the reset button.Yes, SCI sucks and life’s a bitch. But then you live. What choice do you have butto go forward, to reboot? You will. Your inner warrior has more grit than you everdreamed was possible. From the archives of best advice: • Don’t go into this alone. There is a vibrant and caring SCI community in SoCal. If you don’t find these folks, don’t worry, they’ll find you. • Stay active. Be part of something. Get out, play, travel, explore. • Stay aggressive about staying healthy. • Stay hopeful. An army of researchers has its eye on new therapies. • Read. Learn. Interact. Connect. Information is the coin of this realm. • Know your rights and be ready to advocate for yourself. Good luck.SPECIAL THANKSSCI: The First 90 Days would not have been possible without the help of manypeople, or without the support of many sponsors. Please patronize thesebusinesses and services, listed on page 180. First, I want to sincerely thank six doctor specialists who helped meu­ nderstand trauma medicine, the world of specialized rehabilitation, and thenecessity of good care across the life-span. Yaga Szlachcic, Chief of Medicine at the busiest rehab in the SoCal area,Rancho Los Amigos National Rehabilitation Center, in Downey. Suzy Kim, board-certified in spinal cord injury medicine, practices at St. JudeRehab in Orange County. Suzy’s expertise and attention to detail are informedby her own experience with spinal cord injury. v

ACKNOWLEDGMENTS Ann Vasile, also board certified in SCI medicine, practices at Tustin R­ ehab,Care Meridian, and has a private practice based in Long Beach. Bruce Gans is national medical director for Select Medical, which managesthe newest rehab in the region, California Rehabilitation Institute, LA. Steven Kirshblum, Medical Director for Spinal Cord Injury Rehabilitation atthe Kessler Institute, is the kind of SCI doctor everyone should have. Lawrence Vogel is chief of pediatrics and SCI at Shriners Hospitals forChildren, Chicago. Larry and I sat for several years on the steering committee forthe Consortium for Spinal Cord Medicine, which develops authoritative clinicalpractice guidelines for SCI (to which I often refer). Special thanks and an appreciation to Kathy Dunn, recently retired SCI nursein the San Diego VA system. She has a passion for physical medicine and for theSCI community; she’s always prepared to offer expert advice. Thank you Christopher & Dana Reeve Foundation and especially VP ofPrograms and Policy, Maggie Goldberg. Thanks to Craig Hospital and Kenny Hosack for setting the highest bar forquality of care, and for always offering to share Craig’s deep ­resources. Craig isthe model by which to compare all rehab facilities. Thanks to George Kenton for the cohesive, functional book design. For production assistance, thank you to Rozanna Quintana and S­ allyFeliciano. Thank you James Bulger, Esq., and Kristen Tate/Blue Garret foreditorial ­services. For advertising help, thanks very much to Jeff Leonard, DaniKent and Bob Vogel. Thanks to my key SCI community assets for connections and credibilitiy: AndrewSkinner, who founded the Triumph Foundation; Janette Knudson, who works withTriumph and with the housing resource Freedom to Live Foundation; Rick Hayden,head of the United Spinal chapter in Murrieta; Candace Cable, Paralympic championand disability advocate who is helping bring the Olympics to LA; Mark Willits,attorney and advisor; Bob Yant, the main man for cure research. Finally, thank you very much to Steve Heimberg. He’s a personal injuryattorney who is also a medical doctor, and a longtime friend. Steve has beenactive in the Los Angeles spinal cord injury community for many years. His earlysupport for SCI: The First 90 Days was critical. Sam Maddox Los Angeles, California April 2017 vi

Patients at CRH use the EKSO GT wearable roboticexoskeleton to stand up and walk sooner than ever before. Larry Santa Barbara Patients at CRH use the EKSO GT wearable robotic exoRsEkeNletEoWn toYstOanUdRupHanOdPwEal.kRsoEoTneHr tIhNanKevYerObeUfoRre.LIMIT. RELEARN YOUR STEPS. Cottage Rehabilitation Hospital (CRH) offers the most advanced robotic technology to help provide patients with stroke and spinal cord injury the greatest opportunity to stand up and walk again – and even take more steps sooner than ever before. Serving Santa Barbara, Ventura and San Luis Obispo counties for over 60 years, CRH is the Central Coast’s premier provider of medical rehabilitation services. Our advanced team serves people with neurological and musculoskeletal dysfunction, chronic pain and many other complex medical conditions. To learn more about how our advanced rehabilitation technology can help you, contact us at 805.687.7444 or visit cottagehealth.org/rehab

CALL 800.570.1778 FOR FREE SAMPLES Bob Yant ❝ Only Cure Medical offers exceptional products for Cure Medical founder a better today while helping to ensure an even brighter and Cure Catheter® user tomorrow by supporting research for a cure for spinalDecember 2016 • 900,082 - A1 ❞cord injuries and central nervous system disorders. The Cure Medical commitment to support research for a cure for spinal cord injuries (SCI) and central nervous system disorders (CNSD) is unsurpassed in the industry. As a result, simply by using any Cure Medical intermittent catheter, you can experience all these innovative benefits: • All Cure Medical catheters feature smooth, polished eyelets for added comfort • Cure Medical products are not made with DEHP*, BPA, or natural rubber latex • Cure Medical offers a broad range of catheter styles to meet your need • Use of all Cure Medical products helps support research for a cure for SCI and CNSD CALL 800.570.1778 for personal assistance with product selection. VISIT www.curemedical.com for information on products and research advancements. REQUEST FREE SAMPLES by phone or online. * See CA EPA Office of Env. Health Hazard Assessment List of Chemicals Known to the State to Cause Cancer or Reproductive Toxicity, Dec. 8, 2006.

CONTENTS SPINAL CORD INJURY: FIRST 90 DAYS By Sam Maddox • 01 YOU ARE NOT ALONE Welcome to Planet SCI, Peer-to-Peer Resources 13 EMERGENCY MANAGEMENT At the Scene, At the Trauma Center, Clinical Trials 29 SCI BASICS What Got Damaged, Predicting Outcome Non-Traumatic SCI 43 CHOOSING A REHAB Comprehensive, Specialized CareChoosing a Rehab. Insurance. The Top Tier SCI Centers Post-Acute Care. Lifelong Rehab. 91 PEDIATRIC SCI Spinal Cord Injury in Children 101 BODY AND MINDSecondary Conditions. Psychosocial Issues and Coping. Sexuality. 127 CAREGIVING SCI Affects the Whole Family 133 GETTING MOBILE Supplies, Equipment, Tools, Home Modification 147 YOUR LEGAL RIGHTS Civil Rights. How to Choose an Attorney 157 RESEARCH & RECOVERY The SCI Cure: Is it Close? 165 RESOURCES Recreation, Sports, Active Living Education, Work & Funding Strategies 175 INDEX ix



SCI: 90FIRST DAYSINTRODUCTION •WELCOME TO PLANET SCI •YOU ARE NOT ALONE www.SCI.first 90 days.com 1



INTRO WELCOMETO PLANET SCIY ou or someone you know (by Sam Maddox), which you should just got a spinal cord injury? have (free 442-page book or down- Welcome to Planet SCI. It’s a load from the Christopher & Dana strange place. The air is the Reeve Foundation). This book is same as you’re used to. Water about the very early days post-injury,is still wet and fire is still hot. What’s and based on resources and connec-changed is your relationship to time tions mainly in Southern California.and space, as if you inhabit a new par- Some of this information will becomeallel dimension. You may think you’ve useful sooner, some will make morebeen cut off from your past, and also sense later.your future. I assure you that is notthe case. You can’t go back and redo Before we get started, keep a fewwhat’s been done; but what’s ahead important things in mind:is rushing at you faster than you canimagine. So let’s get you ready. YOU ARE NOT ALONE SCI: The FIrST 90 DayS is an attempt Plenty of people ahead of you wentto slow things down a bit, to make from walking to paralyzed, in thesome sense of the sudden chaos you same blink of an eye you now knowfind yourself in. It’s sort of a compan- about. If you take one message fromion to the ParalySIS reSourCe GuIDe the FIrST 90 DayS, it is to get con- nected to peer support - folks whowww.SCI.first 90 days.com 3

INTROhave been where you are, and who MIRACLES HAPPENhave found ways to reinvent them-selves in SCI-land. They’re not the Doctors have very good imagingsame as they were before, but they tools to assess the damage to yourhave come to terms with the way spinal cord. Some will flat out tell youthings are, and they are OK. These what your outcome will be. Know this:fellow survivors can really help. doctors don’t always get it right. You might get lucky. Sometimes peopleOK, yes, it sucks. There is pain, there is fear, and there isdepression. And probably anger and regret. But you have aresilience that you never knew was there.IT’S NOT JUST YOU with paralysis get better, sometimes a lot better.Traumatic injury affects more thanthe injured party, or the person sud- MIRACLES DON’T HAPPEN OFTENdenly paralyzed by a disease. Friends,families and loved ones get swept This is how it goes: You see resourcesup in it too. Not everyone comes out about life with SCI and it doesn’tof it in one piece. Everybody hurts, a­ pply to you because whenevere­ verybody needs help. you’ve been hurt in the past, you got better. You’re not that person doingIT GETS BETTER wheelies in a cool titanium wheelchair, you’re not the one playing wheelchairSeriously, keep breathing. It’s not the basketball. You’re the one who’s go-end of the world. OK, yes, it sucks. ing to walk out of rehab. U­ nless youThere is pain, there is fear, and there is don’t. So just in case, we’ve got somedepression. And probably anger and things to share with you.regret. Go ahead, hide out in denialfor a while. But you have a resilience THE CURE IS OUT THERE. SOMEDAY.that you never knew was there. Andas long as you still have a pulse, you Treatments are being developed tostill get to choose: get busy living or restore function after paralysis. Willget busy dying. this mean walking again? No. They’re not that close, certainly not enoughwww.SCI.first 90 days.com 4

INTROto put life on hold waiting for it. There rules apply, with perhaps some high-is no treatment or therapy now or on tech intervention.)the immediate horizon – includingstem cells in an overseas clinic – that KNOW YOUR RIGHTSyou can have done and assure your-self a better outcome. The best bet: The first weeks post-injury are allstay active, stay fit, and stay healthy. about medical care and rehab, get- ting you ready for home. But outsideTHIS THING IS EXPENSIVE the womb of rehab, out in the mod- ern world, paralysis is challenging.Money. Bring a lot of it. You could try This is true on many levels, includinga crowdfund campaign, or maybe social and political. You just joinedbetter, you could set up a fund that America’s largest minority: the dis-allows donors to get a tax write-off. ability community. There are lawsThere are some local funds that can to protect you from discrimination.help, too. Tip: get Social Security Dis- Moreover, if you are injured and thinkability Insurance going now. Another it might be the fault of someone else,tip: if you think you are the victim of you may have legal recourse.someone’s wrongdoing, get a lawyerwho knows about SCI – right away. WHAT’S IN THE BOOKADVOCATE FOR YOURSELF The First 90 Days is not a day-book or a calendar. The timing and sequencesResist being a spectator when it are quite general. Your sixth weekcomes to your medical or personal may not be like someone else’s. Yourcare, equipment needs, housing outcomes after 90 days may not bea­ ccommodations, legal rights, etc. the same. No two spinal cord injuriesThis isn’t easy in the early days, when are exactly alike, and no two peopleeveryone is too freaked out by trauma should expect the same pathway toto pay attention. You will meet plenty recovery.of gatekeepers. Remember, it’s OK toquestion, appeal, or flat-out disagree The book provides a snapshot ofwith their decisions. what happens to you in emergency management, in acute trauma care inSEX, LOVE, BABIES the emergency room, and in the first days of hospitalization. Granted, theYes. You can still do it but new rules injured party isn’t likely to read thisapply. You can still have babies. (Old part before experiencing it; chanceswww.SCI.first 90 days.com 5

INTROare you beat up more than just your FIM score. Don’t worry, it will becomespinal cord. You’re probably medi- clear soon.cated and less than coherent. The first real choice for the injured Actually, patients or loved ones and his or her family is finding thealmost never get to decide about most appropriate rehabilitation set-emergency management. Typically, ting. There are a number of acuteyou get taken by ambulance or air hospitals in SoCal that provide caretransport to a designated trauma for people with new spinal cord in-center. You should expect that you juries. The top tier rehab units areResearch has shown that people who wind up in designatedtrauma centers emerge with better outcomes. You may havebroken bones, lacerations, burns, other issues.are admitted to a so-called Level I specialized in SCI, and they are ac-center, or at the very least a Level credited – that means they are certi-II unit. Research has shown that fied by outside experts to manage allpeople who wind up in designated the complexities of SCI.trauma centers emerge with betteroutcomes. You may have broken In the era of managed care, choos-bones, lacerations, burns, other is- ing a rehab depends in large part onsues. Those, of course, are taken care your insurance. We will look at theof here. Early on there may be spine basics of private insurance, Medicare,surgery to remove bone fragments or Medi-Cal, Covered California (Afford-to fortify the spinal column. You may able Care Act/Obamacare) and op-be asked to be in a clinical trial. We’ll tions for military veterans.run down what that entails. It is very important to know that if It’s good to know the language coverage is denied you have the righthere on Planet SCI, and we will learn to appeal; we’ll show you how.some medical terminology and evensome basic anatomy. It’s confusing What if you don’t have insurance,when you hear C5 and T6, and com- or don’t have documentation of citi-plete or incomplete, ASIA score and zenship? You can still get taken care of by a team of specialists at a top- level SCI center.www.SCI.first 90 days.com 6

INTROIN REHAB save yourself a lot of aggravation. SCI messes with the mind, too.Once you land in rehab, work hard touse this time well. You will meet a lot ­Depression is often a major part ofof people looking after you, including this, but to a ­large degree, it is treat-doctors and nurses, but also thera- able. There are no magic words topists. You will probably be assigned replace the loss, to make this go away,to a case manager; sometimes this or to make sense of it. Counseling is aperson is called a social worker. This good thing, if you can find it. Reclaim-person helps with insurance and ing yourself and your self-worth is aplans for your exit. •work in progress. Rehab goes by pretty fast thesedays – a couple of weeks for some Also Ahead in the Bookparaplegics, a month or so for quads.That’s not enough time to get you GEARready to go home, honestly, butyou’re going to be discharged any- In the rest of the book we will coverway, ready or not. We’ll look at some things that are important as youways to get you closer to ready. head home and rebuild life. This includes equipment and supplies. SCI messes with the body in many There are many, many choices, andways. Early on, you need to learn to you’ll be guided by what you seetake care of skin, avoid infections, your peers rolling around in, and bymanage bladder and bowel func- what your insurance will reimburse.tions, etc. We’ll look at a list of ail- Remember the words “medicalments that come with SCI, including necessity.” Your doctor can oftenchronic pain and spasticity. We’ll ad- help you get something paid for asdress the topic of sex. long as it’s considered necessary. For injuries in the upper part of the HOME MODSspinal cord, issues with breathing canbe critical. Autonomic dysreflexia is Maybe you never noticed all thosea blood pressure issue that becomes narrow doorways before, but nowa dangerous complication – all the you can’t get in the bathroom atmore so because most doctors out- home. Some home modificationsside of the physical medicine area are fairly easy, like ramps, anddon’t know about it. It’s potentially some more complex, such as doorlethal, so learn about this early, and widening, or putting in a lift.www.SCI.first 90 days.com 7

INTRODRIVING GETTING ACTIVEYou want to get on the road again? We like to say that exercise isOf course, this is SoCal. Even those medicine. Competitive sports arewith limited hand function are able well-organized and there are manyto drive with proper adaptive gear programs that offer recreation,and training. on land or sea. There are endless options for being active here inSCI RESEARCH California. You can surf, bike, ski, dance, bowl, sail or soar. All in theThis section offers an overview of same day!how the spinal cord is damagedand some of the ways scientists CAREGIVINGare hoping to restore its function.They’re getting close. Paralysis is a family issue. In the pages ahead we’ll look at the role ofLAWYER UP family caregivers, who are so often swept into the chaos, and handedTraumatic injuries might be the fault a job they never asked for. Familiesof the injured. But often the injured do the valuable work of caringparty was victimized by someone for a loved one. They persevere,else’s wrongdoing. There may be tirelessly, sometimes thanklessly,remedies by way of a civil lawsuit and at the risk of their own isolationto compensate for losses that were and even health. There are somethe fault of another. If you think you tools and resources that mighthave a case, you need a strong legal help, especially by connecting to aadvocate. We know how to find one. community of caregiversFUNDING DISABILITY RIGHTSWe will look at some ideas for The Americans with Disabilitiesfinding funds. A lot of people use Act (ADA) became law in 1990.crowdfunding, but there are other It sets forth rules that guaranteeoptions, including grants. full participation in society for people with physical or mentalRESOURCES impairments, both in the workplace, and in the community. It’s good toAll through the book are useful know your civil rights.resources for living with SCI in thegreater SoCal region.www.SCI.first 90 days.com 8

INTRO PEER SUPPORT:YOU ARE NOT ALONET he surest way to move f­ orward after spinal cord trauma is to known when they were first injured, connect with people who you often hear this: They wish they share your circumstances first- had been in touch sooner with other hand. Clearly, those living with people who had been down the SCIparalysis are the real experts. There road. At first, people with new i­njuriesis power in community – and that’s describe feeling alone, isolated, andwhy it’s so important to connect scared. But contact with fellow SCIwith your SCI peers. Below is a list of survivors helps turn things around;national support organizations, and it’s the most helpful and honest wayalso sources of local support here in to come to terms with the physicalthe Southland. and psychological challenges of s­ pinal cord injury. If you ask people living with­paralysis if there was one thing they Fortunately, there are many waysknow now that they wish they had to connect with the SCI community, especially in a networked world.www.SCI.first 90 days.com 9

INTROSpecific to the Los Angeles area and RALPH’S RIDERSSoCal, here are several ways to con-nect with the community of people is an LA-based nonprofit that offersliving with ­spinal cord injury. peer and career mentorship, resource information, scholarships, grants, andTRIUMPH FOUNDATION a supportive network. Founded by Mayra Fornos, whose late husbandis a sort of social club for people with Ralph was spinal cord injured. 310-spinal cord injury. Triumph offers 929-5083; ralphsriders.orgpeer-to-peer programs, recreationand social activities. Triumph orga- PUSHRIMnizes support groups from Santa Bar-bara to the Inland Empire, all across is a social network, support resource,the LA metro area, and including San and media platform for friends, fam-Diego. Triumph provides people with ily, and survivors of spinal cord injurynew injuries gift baskets as well as in the LA area; pushrim.orgcompanionship and advice. In somecases, Triumph provides supplies and POSSABILITIESequipment. Some grant support isalso available. The executive director is a robust community outreach pro-is Andrew Skinner, injured in a snow- gram from Loma Linda Universityboard accident in 2004. Call 661- Health in San Bernardino County.803-3700. The website offers a lot Offers physical, social, and educa-of local resource and event connec- tional interaction with peers. 909-tions; triumph-foundation.org 558-6384; teampossabilities.orgKNOWBARRIERS SOCAL CHAPTER/USAis a peer-to-peer mentoring program is a resource hub for individuals,developed by Rancho Los Amigos, families and friends with SCI orthe largest SCI rehab hospital in the r­ elated diseases. This is a chapterarea. They work on life-coaching and of United Spinal Association. 951-skill-building to assist persons with 775-2561; scchapter.orgdisabilities to develop the confidenceand skills needed to move forward in CAL-DIEGOtheir lives and achieve their life goals.562-401-8175; knowbarriers.org is a chapter of the Paralyzed Veter- ans of America. PVA offers advocacy, support and resource programs not just for members but all folks withwww.SCI.first 90 days.com 10

INTROSCI. 800-423-2778 or 858-450-1443; join (free) you get a subscription tocaldiegopva.org New Mobility, the national magazine about active living for people whoIN THE REHABS use wheelchairs. USA has a national chapter network (Triumph Founda-SCI units at most major SoCal rehab tion is a chapter; there is also onecenters offer a support group. based in Murrieta.) The organization offers lots of good online informa-The Top National Resources: tion; spinalcord.org, newmobility.comTHE CHRISTOPHER & DANA REEVE PARALYZED VETERANS OF AMERICAFOUNDATION is, as you’d expect, all about servingNamed for the late Superman actor, the veteran population. But PVA isCDRF offers a goldmine of informa- very much attuned to the needs of alltion, and a staff of resource ­specialists persons with SCI. Lots of resources,who a­ nswer any and all questions re- and support. PVA publishes PN andlated to SCI. The Foundation o­ ffers a Sports n Spokes. pva.orgnumber of free publications, and hasestablished a national peer-to-peer CARE CURE COMMUNITYprogram. Get a copy of the ParalysisResource Guide; download free to your features very active message boardstablet, phone or computer, or order for the SCI community. Many cate-a hard copy from the Foundation. gories are included: “cure” research,800-539-7302; christopherreeve.org equipment, medical issues, financial topics and caregiving. A messageFACING DISABILITY area called Care features certified nurse administrators who offer ex-features interviews and video clips pertise on SCI health. sci.rutgers.eduof dozens of people who’ve beenthrough a spinal cord injury, or who SPINALPEDIAare experts in SCI care. Honest andheartfelt advice. facingdisability.com is a place where people living with paralysis can return to being activeUNITED SPINAL ASSOCIATION members of the community and find strength in the power of the sharedincorporates the National Spinal experience. Lots of role models here.Cord Injury Association, and offersresources and peer support; if you •spinalpedia.comwww.SCI.first 90 days.com 11

When your doctor says you need rehabilitation... WHERE YOU GOMAKES A DIFFERENCE! If you or your loved one suffers from a disabling illness or injury, getting back on your feet quickly requires the kind of comprehensive rehabilitative care that Ballard Rehabilitation Hospital offers. Ballard Rehabilitation Hospital gives you the skills and confi dence needed to gain independence during a short inpatient hospital stay, so you can return home sooner. Choosing Ballard Rehabilitation Hospital will provide you with the intensive care and expertise you need, which is not found at a skilled nursing facility or another lower level of care. Don’t settle, choose Ballard Rehabilitation Hospital. Call Ballard Rehabilitation Hospital for a tour and information today. 909.473.1200 | www.ballardrehab.com 1760 West 16th Street, San Bernardino, CA 92411

SCI: 90FIRST DAYSEMERGENCY CARE •AT THE SCENE•AT THE TRAUMA CENTER •CLINICAL TRIALS www.SCI.first 90 days.com 13

EMERGENCY CAREFIRST HOUR:AT THE SCENEA person who sustains a spinal to mishandling and poor technique. cord injury in Southern Cali- Better pre-hospital care makes a fornia will almost always be huge difference in patient outcome: transported by ambulance Until the 1980s most spinal cord in- or helicopter to a top tier juries were considered “complete.”trauma center. The complexity of Now, the overwhelming majority areSCI and other possible life-threaten- “incomplete.” See page 34 for moreing injuries that often come with the on complete/incomplete.injury must be treated by the mostexperienced specialists at the elite Things at the scene unfold prettytrauma centers. fast: There’s a saying among those who treat strokes that “time is brain.” Before you are moved from the The faster to treatment, the morescene, though, EMTs and paramed- brain tissue is saved, the better theics will keep you alive and get you outcome. Same goes for the sensitiveready for transport. They are much nerve tissue in the spinal cord, wheremore careful these days: it’s been re- the line goes, “time is spine.” Beingported that a generation ago up to near city centers is an advantage:25 percent of cervical spinal injuries mortality rates for motor vehicle acci-occurred after the initial insult due dents are four to five times greater inwww.SCI.first 90 days.com 14

EMERGENCY CARErural areas than those in urban areas. were affected by drugs and alcohol. Keep in mind, at this stage of the But believe me, there is very little judgment in emergency medicine;SCI experience, you really have no the first responders will do every-input. You don’t get to make any de- thing they can to speed you to thecisions for a while. Truth is, you may hospital, regardless of toxicology.not be fully aware of what’s goingon in the immediate aftermath of a WHAT HAPPENS AFTER 911spinal cord injury. This is how this goes: someone calls You may have acquired a head 911, the ambulance crew arrives atinjury along with a back or neck in- the crash, the fall, the sports injury,jury; the percentage of those with the shooting. They may have to cuta primary SCI who also have a trau- you out of the wreckage; they maymatic brain injury (TBI) is reported need to compress the leakiest of yourto be b­ etween 24 and 74 percent – wounds. The paramedics make sure­depending on how TBI is defined. your airways are open, that you’reCertainly because the spinal cord is drawing breath and that circulation isan extension of the brain, it makes working. A spinal cord injury may notsense that injury to the brain could be obvious but if there’s any doubt,very well affect the spinal cord, and you’ll be handled as if there is one. Anvice versa. SCI + TBI complicates unconscious or unresponsive patientmedical and rehab care (for exam- is assumed to have a spinal cord injury.ple, TBI can be associated with agi-tation, seizures or sleep disturbances, The situation is widely variableand also higher levels of depression. but some features of SCI require im-Moreover, a second diagnosis of TBI mediate attention. Stabilization is amay alter an SCI patient’s cognitive priority; the emergency techs quicklyskills – not the ideal scenario heading secure the spine, using a backboardinto the demanding world of rehab). with head restraints. The first provid- ers often use a rigid cervical collar It’s also possible people don’t along with supportive blocks, strap-know what’s happening at the ac- ping down the entire spine. Somecident scene because they’re ham- things have to wait. If a foreign objectmered; studies show that at the time has penetrated the body, for exam-of injury, as many as half of those with ple, the ambulance crew will leave itSCI were intoxicated, one in three be, for fear of uncontrolled bleeding.were high on drugs, and one in fourwww.SCI.first 90 days.com 15

EMERGENCY CARE Higher level injuries affect breath- adequate blood pressure can reduceing, which of course can lead to hy- secondary damage in the spinal cord,poxia (lack of oxygen in the body), thus improving neurologic outcome.which can trigger cardiac arrest – and (See page 31 for more about the dan-a much more critical emergency gerous second wave of damage thatsituation. Many with acute SCI will happens in the hours and days afterThere is very little judgment in emergency medicine; the firstresponders will do everything they can to speed you to thehospital, regardless of your toxicology.likely require supplemental oxygen, the initial trauma).and perhaps intubation. Sometimes More tubes at the accident scene:patients are scared, agitated orcombative. Skilled paramedics may you may get a nasogastric tube toneed to employ an anesthetic and remove stomach secretions, andperhaps a short-acting muscle relax- an indwelling catheter to drain theant to keep you from gagging and bladder.thrashing around too much as theyquickly insert a tube down your wind- Most SoCal injuries happen notpipe without further aggravating the far from a major trauma center. Still,c­ ervical spine. the emergency team has to be very careful during transport to avoid Acute SCI typically causes your pressures that can damage skin. Youblood pressure to drop, due to the can get a dangerous pressure soreshock of trauma, and because of in less than an hour of immobility. Ifsomething called spinal shock, a transfer to the trauma ER is going totemporary loss of spinal reflexes take longer than an hour, you shouldwhich comes and goes in the first be turned for pressure relief at leastdays after spinal cord injury. Low every 30 minutes. (Skin care will for-blood pressure, or hypotension, ever be a top priority for people livingmay require treatment at the scene with SCI; see page 110 for more.)with intravenous fluid, or with drugs.­Research has shown that maintaining Where the ambulance takes you: In California, emergency services are managed mainly at the countywww.SCI.first 90 days.com 16

EMERGENCY CARElevel, accredited by the state Emer- LEVEL II TRAUMA CENTERSgency Medical Services Authority.This agency sets standards for EMT • Arrowhead Regional Medicaland paramedic training and estab-lishes the basics of trauma center tri- Center, Coltonage – sorting out at the emergencyscene the urgency of the injuries, and • California Hospital Medical Center,deciding whether special hospitalexpertise is required. In spinal cord downtown Los Angelesinjury, such expertise is indeed criti-cal: protocols have been established • Desert Hospital, Palm Springsso that any suspected paralysis will • Henry Mayo Newhall Memorialbe transported to a Level I or LevelII trauma center, the highest level Hospital, Santa Claritaof emergency care possible. LevelII centers offer similar coverage as • Huntington Hospital, Pasadenaa Level I but typically deal with less • Kern Medical Center, Bakersfieldvolume, and are usually not part of • Long Beach Memorial • Los Robles Hospital & Medical•teaching hospitals. Center, Thousand OaksLEVELI TRAUMA CENTERS • Mission Hospital, Mission Viejo• Cedars-Sinai Medical Center, Los • Northridge Hospital • Orange County Global Medical Angeles Center, Anaheim• Harbor-UCLA Medical Center, • Palomar Medical Center, Torrance Escondido• LA County+USC Medical Center• Loma Linda University Medical • Providence Holy Cross Medical Center, Redlands Center, Mission Hills (Valley)• Ronald Reagan UCLA Medical • Riverside Community Hospital • Riverside County Regional Center, Los Angeles Medical Center, Moreno Valley• Scripps Mercy Hospital, San Diego• UC San Diego Health System • Santa Barbara Cottage Hospital• UC Irvine Medical Center, Irvine • Scripps Memorial Hospital, La Jolla • Sharp Memorial Hospital, San Diego • St. Francis Medical Center, Lynnwood • St. Mary Medical Center, Long Beach • Ventura County Medical Center, Venturawww.SCI.first 90 days.com 17

We are Proud to Support the Spinal Cord Injury Community The home medical supply experts at Shield are ready to support you & your patients with:Survivor Inspiration • 60 years of medical supply expertise and experience • Leading brand catheters, wound care products and more“By bringing everyone along for the • Reliable supply order management & deliveryride, I intend to educate, inspire • On-staff lifestyle and product specialistsand motivate with tools for recovery, • Online Spinal Cord Injury support community with helpfulhealth and management of a SpinalCord Injury (SCI). I hope you will join articles and resources at shieldhealthcare.com/communityme on this adventure. The possibili-ties are endless!” Meet Aaron Baker | Spinal Cord Injury Lifestyle Specialist -Aaron Baker Seventeen years ago, Aaron broke his neck while motorcycle racing. His prognosis was a one in a million chance of ever feeding himself or walking. Today, Aaron is thankful to have exceeded expectations and achieved world firsts such as racing for the U.S. Paralympic cycling team. Through the recovery, redefinition and rebuilding of his life, Aaron’s one consistent desire has been to share and assist others as a proud SCI ambassador. Aaron is also the co-founder and owner of C.O.R.E. Centers LLC in Northridge, California.If you don’t know what your options are, you don’t have any.Patient Advocacy and Navigation Services Contact the SoCal SCI Hotline. ❖ 213-797-0304 [email protected]

EMERGENCY CARE AT THETRAUMA CENTERG ood news: You’re not dead. neck or cervical spine; they don’t You made it to the emer- want to disturb the cord any further. gency room, and if the trauma triage system is ef- Sometimes an emergency breath- ficient, you are at a high-vol- ing passage is necessary, especially inume, Level I unit. The first 24 hours of those with high cervical injuries. Thetrauma care are said to be the deadli- ER doctors may not yet know theest, so top level care is essential. full extent of injury (especially if the patient is incoherent or unconscious) As you know from all the medi- but if you’re having trouble breath-cal dramas you’ve seen on TV, the ing unassisted they won’t hesitatetrauma team swarms around you as to open the neck and trachea to me-the ambulance arrives. First prior- chanically ventilate.ity of their workup, same as at theaccident scene, is making sure the Respiratory complications areairways are clear and that breathing common in acute SCI. Muscle weak-is functional. If the airway is injured ness reduces the ability to cough,or obstructed, an endotracheal tube so secretions in the lungs have to bemay be inserted. This can be tricky managed manually, or with a coughwith any suspected injuries to the assist machine. Pneumonia is always a threat, and mechanical ventilationwww.SCI.first 90 days.com 19

EMERGENCY CAREincreases the risk of infection. gerous pressure due to swelling of Circulation must be secured. Any brain tissue (as noted previously, there is a high correlation betweenexternal wounds are treated and brain injury and spinal cord injury).if there are indications of internal If SCI is suspected, full immobiliza-bleeding, surgery may be required. In tion is continued. This may includehigh-impact injuries, there is a strong fitting of what’s called a halo vest – apossibility of an injury to the aorta, tight-fitting, rigid vest that includesthe main artery of the body, passing titanium fittings on the skull. The ad-over the heart and running down in vantage of a halo is that it is relativelyfront of the spinal column. comfortable and permits mobility; it might remain in use for a few weeks Blood pressure is closely watched,with a goal of 85 to 90 mm Hg for theEarly on, mental and motor function tests are performed, in-cluding checking for movement of the extremities, which ofcourse isn’t easy if the patient is unconscious.first week following an acute spinal for some patients, including use whilecord injury. Low blood pressure (hy- in rehab.potension) can be treated with drugsthat tighten blood vessels (vasopres- The situation in the ER is widelysors, such as dopamine, norepineph- variable, of course, and we riskrine, phenylephrine), and by way of over-simplifying it, but once you areintravenous fluid resuscitation. more or less patched up and your vital signs are secure, assessments Early on, mental and motor func- are made to determine the extent oftion tests are performed, including neurological damage. The doctorschecking for movement of the ex- need to know what’s going on, andtremities, which of course isn’t easy what to expect clinically in comingif the patient is unconscious. The days and weeks. And of course soGlasgow Coma Scale measures re- do you, your family and loved ones.sponsiveness. Examination of thepupils may reveal loss of reflex; this Doctors typically start with aand other signs might indicate dan- baseline AIS score (short for ASIA Im- pairment Scale), carried out as soonwww.SCI.first 90 days.com 20

EMERGENCY CAREas possible and almost always in the bilized). CT (same as CAT scan) isfirst 72 hours. If SCI is confirmed, the best for viewing injuries to bone. Itnext step is to determine the level has the advantage of speed – it takesof neurological injury (see pp. 31 to just a few minutes. MRI is considered34 for more on levels of injury) and best for examining soft tissue and lig-completeness of injury. AIS detects ament injuries – useful in diagnosingneurological deterioration, or im- spinal cord damage – but can takeprovement, by measuring motor and up to 30 minutes. Advanced imagingsensory function below the injury; the such as diffusion tensor magneticscore is derived by testing ten muscle resonance imaging, which can iden-groups in the elbow, wrist, fingers, tify intact nerve tracts, are becom-hips, knees, ankles and toes. Sensa- ing more common and offer doctorstion is measured using light touch finer detail, and may therefore be aor pinprick measures of sensation better tool to predict outcome.across 28 sensory zones in the body.A key part of the exam involves rectal BRUISED, NOT SEVEREDsensation and voluntary contraction. The popular terminology in the news Motor and sensory assessments media is that a person has a “severed”are not 100 percent predictive of out- spinal cord. That is almost nevercome (see p. 35 for more on outcome the case, except for bullet or knifeprediction) but they are very useful to wounds. Typically, the cord is fullythe treating team; ASIA scores will be intact but bruised by the impact oftaken several times over the course of the accident. The initial trauma maythe first days of injury, as scores can knock out some primary nerves,change, for better or worse. which brings about loss of function. But there’s more damage to come. As soon as possible, a patient is The immediate injury to the cordbrought to the radiology area to im- also produces a cascade of otherage the damaged cord. There, tech- destructive events, including bleed-nicians will do a CT scan, and in some ing, swelling and biochemical chaoscases, an MRI. (Normal x-ray scans at the injury site. This contributesare not ruled out, but are less sensi- to further nerve death and loss oftive than CT; x-rays alone have been body functions, and may continuereported to miss more than half of for hours, days, and even weeks, afterfractures of the cervical spine, which injury. While nothing can be done towould be a big problem if not immo-www.SCI.first 90 days.com 21

EMERGENCY CAREreverse the initial crushing impact or if damage extends along severalthat caused the injury, many experi- vertebrae, the surgeon may fortifyments have shown that so-called sec- the spine, often using bone from theondary damage can be minimized, patient’s hip bones (iliac crest) to re-thus reducing the degree of disability. build the vertebral bone. Other op- tions include use of metal hardware There have been numerous exper- such as plates, screws and rods toiments with drugs, cell therapies and secure the backbone, and to elimi-with procedures such as cooling of nate pressure on the cord.the spinal cord, yet no drug or pro-cedure has ever been approved by If surgery is recommended, thethe FDA to treat acute spinal cord in- trauma center neurosurgeon decidesjury. Some emergency room doctors when to begin, either soon after in-prescribe a high-dose steroid called jury, within the first 12 to 24 hours,methylprednisolone (MP) very soon or to wait for the cord to heal for aafter SCI. Twenty years ago most few days. There is evidence in thenewly injured patients got MP, admin- medical literature that early surgeryistered within eight hours of injury; it and decompression after SCI is safewas believed to reduce inflammation, and is associated with improved neu-preserve blood flow and therefore rologic outcome; there are surgeonsrescue sensitive spinal cord tissue. In who prefer to wait, operating onlyrecent years, however, research has when swelling of the damaged cordsuggested that a major side effect ofMP – the susceptibility to infection – •calms down.outweighs any benefits. OTHER COMPLICATIONS If the bones of the spine are dam-aged or dislocated, the ER doctors Other medical issues are carefullymay recommend realignment by monitored early on after SCI. Deepnonsurgical means – using tongs on vein thrombosis is common, thethe skull and traction, for example, to result of poor circulation and bloodgently pull and reposition the neck clotting in the lower extremities. Thebones. Surgery may be required to greatest risk is for a clot to movetake pressure off spinal cord tissue, through the bloodstream and intoespecially removing bone fragments the lungs, resulting in a life-threat-that may be pressing on the cord. ening pulmonary embolism. TheIf the bony vertebrae are damaged, blood-thinning drug heparinwww.SCI.first 90 days.com 22

EMERGENCY CARE­addresses this complication. Many Food or liquid that goes down thepatients may also be fitted with com- windpipe is not good, as it may leadpression socks. In some, a tiny filter is to pneumonia. This often requiresinserted in a major artery so a loose food to be fed by tube.clot won’t reach the lungs. Pain accompanies SCI in most Skin care, we will say it again, is a cases. The source may be from ex-critical issue for people with SCI. It is ternal injuries or from nerve pain,carefully monitored in the acute care felt at the level of injury or below.setting. A pressure sore, a skin in- Neuropathic pain can be difficultfection that can occur if pressure on to measure, and is more difficult toskin is not relieved often, can begin treat than musculoskeletal pain. Theeven after a short time of immobil- sense of touch can become hyper-ity. Hospitals may consider using a sensitive (allodynia). Doctors tryspecialized bed for patients with an to balance sedation with the needunstable spinal column if a long im- for further assessments of nervemobilization is expected. function. Sometimes they prescribe short-acting medications to allow Do not take chances with your periodic neurologic testing. (Seeskin! Pressure wounds occur in as more on pain, p. 107.)many as half of patients with newSCI during the first month post-injury Injuries above the T6 level are– this often begins in acute trauma often accompanied by autonomiccare and is entirely preventable. dysreflexia (AD), which can be a se- rious, life-threatening complication Bladder and bowel management and must be closely watched. (Forbegin as soon as vital signs are sta- more about AD, see p. 102.)bilized. (For more on B & B, pp. 104,105). SCI commonly causes urinary Patients with the most severe in-retention, even in those with incom- juries remain in the ER before trans-plete injuries. In the emergency set- fer to the trauma center’s medical/ting an indwelling catheter is usually surgical area. You’ll stay in med/surgused to prevent an overfull bladder. until medically cleared for rehab – which depends on your complica- Nutrition is important in trauma tions. It could only be a day or two.care to prevent complications and The national average for staying inpromote healing. Difficulty swallow- the ER is 11 days (it used to be 24ing (dysphagia) is common in acute days in the 1970s).cervical SCI, and can cause choking.www.SCI.first 90 days.com 23

EMERGENCY CARECLINICALTRIALSPeople with acute spinal all publicly and privately sponsored cord injury may be asked to clinical trials, for all conditions, in all participate in a clinical trial, locations around the world. Look an experimental research up spinal cord injury, for example. study to test new therapies There are over 300 clinical trialsor devices. Some of these studies in the U.S. now recruiting patients,must begin within the first few hours with about 60 open trials recruitingor days after injury, an urgency that patients with acute, or brand new,may complicate the decision to spinal cord injuries. If you narrowparticipate. the search to just California, there are about 20 current clinical trials Here we will look at what a clinical for SCI. An industry-academictrial is, how trials work, and trials that collaboration called Spinal Cordare currently looking for participants Outcomes Partnership Endeavorin California. (SCOPE) maintains a very handy chart of all clinical trials specific to The best resource for information SCI (see scope-sci.org/trials).on clinical trials comes from the U.S.National Institutes of Health, c/o Important consideration for anyClinicalTrials.gov, which sponsors an patient considering participation in aup-to-date, searchable database forwww.SCI.first 90 days.com 24

EMERGENCY CAREtrial: A trial is not a treatment. Those trials compare interventions thatrunning the trial cannot ethically are already available to each other.make any presumptions or promises When a new product or approachabout the effect of the drug, device is being studied, it is not usuallyor therapy. These are experiments, known whether it will be helpful,not treatments. The drug, device or harmful, or no different thanintervention might demonstrate a available alternatives (including noclear benefit in some participants but intervention). The investigators trythat cannot be used to persuade you to determine the safety and efficacyto join the trial. of the intervention by measuring certain outcomes in the participants. A clinical trial is a research For example, investigators may giveproject that uses human volunteers a drug or treatment to participants(participants). The goal is to learn who have high blood pressure toabout disease, injuries and therapies, see whether their blood pressureand thus to add to medical knowledge. decreases.Clinical trials are sponsored orfunded by drug or medical device Many trials are “blinded,” that is,companies, university medical neither the patient nor the researchcenters, or non-profit organizations team knows if a particular dose or(for example, the Christopher & Dana intervention was the active drug orReeve Foundation). Federal agencies the placebo.including the National Institutes ofHealth, the Department of Defense, There are several phases to aand the Department of Veterans clinical trial; the first two are mainlyAffairs also sponsor research. Clinical focused on safety.trials involve no cost to participants. Phase I: tests an experimental drugTHIS IS HOW NIH or treatment in a small group ofDESCRIBES THE PROCESS: people to study safety and identify side effects. No efficacy (benefit) isClinical trials may compare a new planned for.medical approach to a standard one Phase II: a drug or therapy isthat is already available, to a placebo administered to a larger group[a dummy drug, e.g., a sugar pill] of people to further evaluatethat contains no active ingredients, effectiveness and safety.or to no intervention. Some clinical Phase III: an experimental drug orwww.SCI.first 90 days.com 25

EMERGENCY CAREtreatment is administered to large must sign an informed consentnumbers of people (1,000+) to document before beginning a studyconfirm safety and effectiveness, and to validate that information wasto look for side effects. provided and understood on risks,Phase IV: After a drug is approved potential benefits, and alternatives.by the FDA and marketed to the Participants can quit a trial at anypublic, researchers must track its time, even before the study is over.effectiveness, safety, and side effects. QUESTIONS TO ASKIF YOU PARTICIPATE IN A STUDY Those thinking about participatingA clinical trial is conducted within a in a clinical trial should know asspecific protocol, designed to answer much as possible about the study.research questions and safeguardthe well-being of participants. The • What exactly is beingprotocol must be spelled out; it studied, how long willcontains the following information: the trial last, and what is the basis for thinking the • The primary reason for doing intervention might work? the study. • Has it been tested before? • Who and how many are • Who will know if I get a drug eligible to participate. In SCI, a trial may be restricted to or a placebo during the trial? injuries less than year old, for • What tests and procedures example, or to injuries of the cervical spinal cord only. are involved? • Will I need to be • How long will it take, what tests, procedures, or drugs hospitalized, and how often are involved. do I have to visit the clinic? • Will I be reimbursed for any Informed consent is an important expenses?part of any clinical trial. This is the • Is there long-term follow-upway in which researchers protect care as part of the trial?participants by giving them critical • Who supervises my medicaldetails about a study, including care while I’m in the trial?its risks. This helps people decide • What if I am injured duringwhether they want to enroll, orcontinue, in a study. Generally, one •the study?www.SCI.first 90 days.com 26

EMERGENCY CARECALIFORNIA SCI days after injury. California trialCLINICAL TRIALS sites include Rancho Los Amigos (in collaboration with USC/Keck),(Subject to change; current as of and Stanford University/Santa Claraearly 2017; see clinicaltrials.gov for Valley Medical Center. For detailsthe most up-to-date information.) see scistar-study.com InVivo Therapeutics is UCLA is recruiting in the LAsponsoring a Phase III study of area for several neuromodulationa surgically implanted polymer trials, one for bladder (at leastscaffold in the area of spinal cord one year post injury; SCI at C2-injury. Recruiting AIS A (complete) T8, motor complete AIS A or B);injuries, T2-T12/L1; implantation another for hand function (at leastmust occur within first four days one year post injury, AIS C, C7 orafter injury. Clinical sites include higher cervical injury); and oneUSC/Keck School of Medicine using transcutaneous (surface)in Los Angeles, UC San Diego stimulation of the legs (AIS A, B,Medical Cernter, and UC Davis or C, one year post injury, cervicalMedical Center in Sacramento.See or thoracic injuries). The handinvivotherapeutics.com and leg studies are sponsored by NeuroRecovery Technologies. See Vertex Pharmaceuticals has neurorecoverytechnologies.combegun a Phase III trial for acutecervical SCI (C4, C5 or C6) testing Rancho Los Amigoscethrin, a drug that could offer both Rehabilitation Hospital, inregenerative and neuroprotective collaboration with USC and CalTech,activity. Earlier tests showed is recruiting high level quadriplegicspromising recovery. Trial sites in for a study of closed loop brain-California include UC Davis Medical machine interface technology,Center in Sacramento and several reanimating the paralyzed bodytrauma centers in greater Los using signals from the patient’sAngeles. See vertexscitrial.com brain and transmitting those signals below the level of injury to facilitate Asterias Biotherapeutics is hand function. In Los Angeles.recruiting completely injured Contact Dr. Charles Liu, chasliu@quadriplegic patients (AIS A, cheme.caltech.eduC5 – C7) for a Phase I/IIa trial ofembryonic stem cells; must beadministered between 14 and 30www.SCI.first 90 days.com 27

A National Leader in Providing Medical Suppliesand Supporting Adaptive Sports in the U.S.Trust AreYouReadyto Adapt.Believe.Compete.?Life is not always easy. When we hit a roadblock,we turn to those whom we can trust. ABC Medical Call (866) 897-8588 now and letis your proud partner throughout your journey and ABC Medical eliminate your stressa trusted resource for all your medical needs. around obtaining medical supplies.Choice For a limited time only, we are offering Free ABC Swag,We are a one-stop shop provider of all urology,ostomy, wound care, and bowel management including t-shirts, lunch boxes,programs. Whether you are a current customer or and cell-phone holders.not, you can take advantage of our sample programand find the right product that fits your needs. Don't forget to request your preference when you call us!SupportFrom reducing the stress in your life aboutordering medical supplies to helping connect youwith your local adaptive resources, our legendarycustomer service is here to support you each andevery day. ABC Home Medical Supply, Inc.p. (866) 897-8588 | www.abc-med.com

SCI: 90FIRST DAYSSPINAL CORDINJURY BASICS •WHAT GOT DAMAGED •PREDICTING THE FUTURE www.SCI.first 90 days.com 29

SPINAL CORD INJURY BASICSTHE BASICS OFSPINAL CORD INJURYSpinal cord injury is usually (mid-chest), and the remainder oc- the result of forceful trauma cur mostly in the lumbar area (the related to motor vehicle acci- lower back). dents, sports injuries, falls, or acts of violence. SCI is sudden The spinal cord is an extension ofand dramatic, and happens to an the brain; it’s a thin bundle of nerve­estimated 17,000 people a year in f­ibers that extends from the base ofthe United States, or about 1,200 new the brain down to the tailbone. It isinjuries a year in Southern California. made up of long nerve fibers, someMost injuries occur to men (about 80 extending the length of the back,percent) and mostly to people in their plus numerous nerve networks up20s. In recent years higher numbers and down the cord. The spinal cordof people 60 and older are becoming coordinates movement and activityspinal cord injured, the result, appar- of arms and legs and torso; the cordently, of more active lifestyles across also transmits messages for sensa-the lifespan. tion, such as touch, heat, or pain. ­Researchers have found that the spi- More than half of spinal cord inju- nal cord is itself smart – it is capableries occur in the cervical area (neck), of processing sensory information toa third occur in the thoracic area control movements of the extrem-www.SCI.first 90 days.com 30

SPINAL CORD INJURY BASICSities, without input from the brain. than a single event. The initial traumaThis will be discussed later (see p. 161) wipes out an essential population ofas we see how it may be possible to spinal nerve cells. In the hours and“awaken” spinal cord function. days after injury, however, a new wave of events extends the damage. Until the 1940s, long-term survival These events include swelling, im-after SCI was very poor. People often mune response, loss of oxygen anddied of infections to the urinary tract, the release of chemicals that poisonlungs, or skin. The era of antibiotic surviving nerve cells. In theory, thisdrugs, beginning around World WarThe spinal cord coordinates movement and activity ofarms and legs and torso; the cord also transmits messagesfor sensation, such as touch, heat, or pain.II, made it possible for people living secondary damage might be con-with spinal cord injury to stay healthy trolled, thus saving precious nerveand to closely match life expectancy tissue and function. Indeed, therewith the general public. have over the years been dozens of drugs and procedures that have been The most common cause of SCI is tested for this. At this time, however,blunt force trauma, although damage there is no recommended treatmentalso occurs from diseases at birth or to prevent secondary spinal cordacquired later in life, from tumors, damage. There are several ongoingelectric shock, poisoning or loss of clinical trials for acute SCI, testingoxygen related to surgical mistakes drugs, cooling, scaffolding, cell ther-or scuba diving mishaps. The cord is apy, etc., to address secondary nervewell-protected by the bones of the loss. You may be asked to join suchbackbone, called vertebrae. In the a trial. (See p. 24 for more on what’scase of trauma, however, the force involved in a clinical study).of impact can exceed the strength ofthe bone. Except in cases of gunshot LEVELS OF INJURYor knife wound, the spinal cord is notusually cut, it is pinched, or bruised. The backbone is made up of 33 ver- tebrae segments. The spinal cord is Spinal cord injury is much morewww.SCI.first 90 days.com 31

SPINAL CORD INJURY BASICSlabeled by its position on the verte- and perhaps fingers, thus retainingbrae (if you map this, it’s called a der- some ability for self-care and a largermatome, see illustration next page). degree of independence.These segments are important in SCI:basically, the lower the segment, the C4 generally means loss of move-higher the function, and vice versa. ment and sensation in all four ex- tremities; C5 injuries usually spare In the neck, or cervical region, the the shoulders and biceps, but not sosegments are labeled C1 through much the wrists or hands. C5s canC8, and correspond to nerves that handle many activities of daily livingcontrol function in the neck, arms, on their own, including feeding. C6hands, and diaphragm. Injuries to this injuries have sufficient wrist controlarea result in tetraplegia (the medical to drive an adaptive vehicle, but notNo two spinal cord injuries are ­exactly alike; other than level ofinjury, the other major factor that determines recovery is howbadly the spinal cord was bruised.term) or quadriplegia (as it is more much power in the hands. C7 and T1commonly called). injuries can handle most of their own self-care but hands and fingers still C1 – C3: A high cervical injury, such won’t be 100 percent.as that of the late actor ChristopherReeve (C2) affects breathing and re- In the thoracic, or upper backquires mechanical ventilation. Reeve ­region, T1 to T8 segments affect con-was unable to move or feel any part trol of the upper torso and trunk. Thisof his body except his head. He re- is the result of abdominal muscle lossquired assistance for eating, dressing, but arms and fingers are OK. Lowerbathing, hygiene, everything except t­ horacic injuries (T9 to T12) allow bet-for piloting his power wheelchair ter trunk control.with a sip and puff controller. If hehad been injured just a few vertebrae Lumbar, or mid-back region seg-lower on his spinal column – a matter ments (L1 through L5) affect hips andof an inch or two – Reeve would have legs. A person with an L4 injury canhad some ability to move his arms, often extend the knees. The sacral segments (S1 through S5) in the lowerwww.SCI.first 90 days.com 32



SPINAL CORD INJURY BASICSback affect groin, toes, and legs. tion have been preserved. It’s important to note that no two • ASIA D means more than halfspinal cord injuries are exactly alike. of muscle and sensory functionOther than level of injury, the major remains.factor that determines level of func- • ASIA E is normal.tion and potential for recovery is how One of the key aspects of the AISAbadly the spinal cord was bruised. score is completeness vs. incom- pleteness. In simple terms, a person Just about all segments of spinal with an incomplete injury has somecord injury affect the legs and feet, ability to move muscles, or to feelas well as bladder, bowel and sexual touch or pinprick below the level offunction. A number of other com- injury. That means there is sparedplications may accompany SCI: low sensory or motor function below theblood pressure, autonomic dysre- level of injury.flexia (for injuries above T6), spas- It is true in most cases of SCI thatticity, and chronic pain. Then there people improve beyond their initialare the secondary issues related to diagnosis. Many people get quite aparalysis: pressure ulcers, respiratory bit better over the first few monthsissues, urinary tract infections, pain, but generally, improvement plateausand depression. after six months to a year. The import- ant thing about complete vs. incom-COMPLETE VS. plete is that historically, incompleteINCOMPLETE INJURY patients stand a better chance of recovering some degree of functionThere are several tests doctors use tomeasure level of injury and ­degree of •than those labeled complete.paralysis. The most common is Amer-ican Spinal Injury Association (ASIA)Impairment Score (AIS), which as-signs a letter grade to general levels.• ASIA A means no motor or sen- sory function is detected below the level of injury.• ASIA B means there is some sen- sory function, no motor function.• ASIA C indicates some motor function and some sensory func-www.SCI.first 90 days.com 34

SPINAL CORD INJURY BASICSPREDICTING OUTCOMES o, what’s going to happen to They can compare your injury to you? When will you get better? many others they have seen. They’ll How much recovery can you tell you what they think will happen, expect? What are you going and what might not happen. While to be able to do on your own? doctors are not always certain whatHow much help will you need? What your outcome will be, they should besort of equipment will you need? able to give you a good idea what you are facing. You and your family need to makeplans and manage expectations. IMPORTANT POINTS:Doctors and therapists also need toknow how to tailor treatments and Prediction is not destiny. Keep inrehab for your specific injury. You are mind that your situation is uniqueabout to get an outcome prediction. and may not fit the usual pattern. You could recover much more than In the trauma center, as soon as expected. There is also a chance youryou’re medically stable, doctors will recovery might not meet your doc-measure your function with several tors’ outcome expectations.diagnostic tools. They can also usex-ray, MRI or other devices to visual- A “complete injury” may not beize the damage to your spinal cord. so complete. The medical field haswww.SCI.first 90 days.com 35

SPINAL CORD INJURY BASICSalways defined complete spinal cord THE FUTURE IS UNWRITTENinjury as lacking motor or sensoryfunction below the level of injury. There is usually hope for at least aThat’s not the whole story. Recent little improvement after spinal cordexperiments with spinal cord stim- injury, but even with the most so-ulation have shown that a group of phisticated tools, no one can predictparaplegics considered ASIA A – full your future. Even measured on themotor and sensory complete inju- first day or two post-injury, outcomeries – were able to initiate voluntary predictions are fairly reliable, thoughmovement in paralyzed limbs, and not infallible.were also able to control bladder andbowel function. Stimulation appears •Generally, those with a completeto awaken intact but dormant nerve injury (no muscle power or sensationcircuits in the spinal cord. These below the level of injury) regain onecircuits then reactivate movement or two levels of function.patterns programmed into the cord.There’s more vitality in the injured •About 80 to 90 percent of thosespinal cord than previously thought. with complete injuries will usually ­remain complete. The nervous system has potentialfor recovery. The spinal cord is “plas- •The majority of those with ­motortic.” Some nerve messages can be incomplete injuries recover somererouted and, perhaps, restored. This ability to walk.hasn’t been fully figured out yet, butbe hopeful, and be wary of the word •If improvement continues, such“never.” (See SCI research, p. 158.) as increasing muscle movement, chances for more improvement are The following information is based usually better.on what usually occurs for peoplewith various levels of injury, gathered •The longer you go without im-over many years at U.S. rehab cen- provement, chances for improve-ters. It’s important to know that no ment are lower.two spinal cord injuries are exactlyalike, and many variables come into •Those with an incomplete injuryplay that affect recovery – your age, (some muscle or sensory functionother injuries or health conditions you below level of injury) are more likelymay have, even your state of mind. than those with a complete injury to regain movement. •There is no sure way to know how much will return. •Younger people generallly re- cover more than older people.www.SCI.first 90 days.com 36

SPINAL CORD INJURY BASICS Doctors have seen recovery af- a mechanical lift with a sling. Highter two years; some people injured quads are still mobile; they can powerlonger than that continue to recover. an electric wheelchair by way of sip-Generally, though, most functional and-puff devices, and can handle in-recovery takes place in the first 12 dependent communication, with themonths after injury. right equipment. They can manage their caregivers as long as they ableBY LEVEL OF INJURY to explain everything.Here are summaries of outcome LEVEL C4expectations (­remember, these aregeneral outcomes, based on a large This level of injury involves full bodynumber of patients. They are not im- paralysis with some neck and shoul-mutable facts regarding your injury). der movement. People with thesePeople with incomplete i­njuries are injuries are usually able to breatheespecially variable, and therefore without a ventilator. The functionalhard to categorize across all mea- profile is similar to that for a C1-3sures of function. This data comes quad (some neck flexion, no handfrom the Consortium for Spinal Cord function, no cough). A C4 will requireMedicine, which publishes authori- a wheelchair with power recline and/tative, peer-reviewed clinical prac- or tilt. A tilt or standing table mighttice guidelines for spinal cord injury. be used. Total assistance is generally(Obtain full reports at pva.org, search needed for all tasks of daily living,“publications.”) except power wheelchair use.LEVEL C1-3 LEVEL C5This is the highest level of spinal cord This is the most common level of spi-­injury; it involves total paralysis of the nal cord injury. People at this leveltrunk and arms and legs. Most likely usually retain shoulder and elbowthese injuries will require mechan- flexion, but have weak hands andical ventilation and typically need wrists. Many C5s use hand splints.24-hour care for daily activities, in- A hydraulic standing frame mightcluding help with bowel, bladder, bed be used. Some at this level can pushmobility, transfers, eating, dressing, a manual wheelchair with adaptivegrooming, bathing and transporta- rims. Breathing endurance is re-tion. Caregivers may need to use duced, limiting ability to cough; assis-www.SCI.first 90 days.com 37

SPINAL CORD INJURY BASICStance may be needed for secretions. attendant is typically needed forA person with a C5 injury can eat some daily activities.independently if meals are properlyset up. Personal care assistance is LEVEL T1-9needed daily, especially for groom-ing, bed transfers, and dressing. This level of injury involves lowerSome C5s can drive a ­vehicle with the trunk paralysis, somewhat limitedright specialized gear and training. trunk stability, but full arm and hand function. Paraplegics with this injuryLEVEL C6 may have impaired vital capacity but are mainly independent for activitiesThis level involves total paralysis of of daily living, including wheelchairtrunk and legs. People with this injury loading and unloading into a car,are generally able to do more on their work, school, and homemaking.own than those with higher injuries.There is usually some compromised LEVEL T10-L1vital capacity (air volume). Some helpmay be needed for bowel manage- This level of injury indicates paralysisment, transfers, and bathing. Wrist of the legs but with good trunk stabil-flexion and hand movement are im- ity and an intact respiratory system.paired; adaptive gear may be helpful. People with this injury are mainly in-A C6 can usually push a manual chair dependent in most functional activi-and do weight shifts. Personal care is ties; some paras at this level are ablerequired for getting up in the morn- to stand and ambulate with forearming, grooming, going to bed. Driving crutches or a walker.is not complicated. LEVEL L2-S5LEVEL C7/8 This very low injury involves partialThis level of injury involves paralysis paralysis of legs, hips, knees, anklesof the trunk and legs but with greater and feet. People with an injury to thearm and hand dexterity, including el- sacral spinal cord have good trunkbow, wrist and thumb extension. Peo- support and are mainly independentple with this level of injury are mostly for the wheelchair lifestyle. Bladder,independent for bladder and bowel bowel, and pain issues are possible.self-care, bed-to-chair transfers, eat- Some people with this injury are ableing, grooming, etc. A personal care to stand and ambulate with braces, •crutches, or a cane.www.SCI.first 90 days.com 38