Spinal Cord Injuries — New Possibilities

Circa 2008

The Second Look Program at the Rehabilitation Institute of Chicago (RIC) offers people with all levels of spinal cord injury, including those who rely on ventilators, a care-management update to identify the latest and best therapies available to help them embrace the best life possible. No matter how old your injury, Second Look helps you obtain the latest developments in rehabilitation. ABILITY’s medical editor Thomas Chappell, MD, spoke with David Chen, MD, the physiatrist who runs RIC, about his program.

Thomas Chappell, MD: How does Second Look work?

David Chen, MD: It’s a comprehensive multidisciplinary program with at least two goals. One is to address the fact that, due to improved care and better maintenance, individuals with spinal cord injury are living longer. As a result, they develop new problems that we need to address. Also, there are treatments available for some individuals who were injured 10 or 15 years ago that were not available at that time. We want to help them take advantage of the improved technology and techniques.

TC: How did the idea come to you?

DC: After 16 years in practice, I was encountering people who had lived 10, 15 and 25 years with a disability. They came to me with reports of different issues than the ones we’d been used to dealing with in the earlier phases of a disability. Before the Second Look program, I would say, “Well, maybe we need to have you see the physical therapist, or the occupational therapist to address these issues.” But I was starting to see the same physical complications so regularly that I said, “You know, maybe we should have a regular program for these people.”

Now we see these individuals on a periodic basis, maybe once a year or every two years. We spend two or three hours with them, where they get medical review and follow-up, a comprehensive examination, and are evaluated by physical, occupational and possibly even speech therapists. We used to refer them to various therapists, but now we’ve become a “one-stop shop.” Some individuals are doing just fine. For others, further outpatient or inpatient therapies may help them head off issues they could encounter as they grow older.

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TC: Are you accumulating data to demonstrate the effectiveness of the program?

DC: We are. As part of our obligation to the Model Systems Program, we collect outcome and follow-up data.

TC: So you have an intake assessment, determine what interventions the patient might benefit from, and later assess them again after some time to see if they’ve benefited in any way?

DC: Yes, but as we continue to track these individuals, say six months down the line. It’s more important to ask,

“Have they been able to maintain the functional gains they’ve achieved? Have they encountered any other issues related to medical complications or hospitalization?”

TC: I take it there are no issues with billing the thirdparty payers for your services?

DC: Right, and interestingly, with a number of payers, they’ve been surprisingly forward-thinking. They see it as an investment in these individuals, an opportunity to head off potential complications. In the long run, this may actually save money in reduced payouts.

TC: How do you determine if a patient can benefit from further therapy? How does a “second look” differ from the initial evaluation a patient gets just after their injury, for example?

DC: Well, you know, a “second look” is not greatly different from the patient’s very first assessment. The main difference is that it is occurring at a different phase in the patient’s disability, when new problems or issues may arise. Ordinarily after each one of the different therapists has assessed the individual and discussed their situation, then the various therapists and I get together and discuss the available options.

For example, we may determine that an individual might benefit from a single-discipline therapy, such as physical therapy alone, or maybe just occupational therapy. If we really feel that the individual might benefit from readmission to our inpatient unit, we can try that. There are individuals who really don’t want to come back into the hospital, and if we can achieve what they want on an outpatient basis, then we can go that route.

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TC: What are you finding? What conditions most commonly pop up that meet criteria for further therapy?

DC: The most common things we are beginning to see are musculo-skeletal issues—the wear and tear that comes from having lived for 15, 20, 25 years with a severe disability, such as paraplegia. It may be because of the way that they are accommodated for their disability. A lot of what we do is focus on stress-relieving accommodations that a person can incorporate into day-to-day activities. It’s a matter of teaching them new techniques or different ways of using the equipment they have, or possibly getting them different equipment. Sometimes new technologies or improved equipment is available. But it’s really working with the individual situation, and determining whether a change may help them now, as well as in the future.

TC: Can you give me an example where you made a significant impact on somebody’s quality of life?

DC: There are a couple of individuals who are low-level quadriplegics, and who are very independent. They use manual wheelchairs because that works well for them. The chairs have the advantage of being more accessible and easier to load and unload from a vehicle, things like that. But many of these people begin to experience difficulties with their shoulders as time goes on. Some were performing transfers (from bed to chair, or chair to car, for example), and propelling their wheelchairs in a fashion that we now know is incorrect.

They were doing what they had been taught 15 or 20 years ago. Our therapists incorporated some changes into their transfer and mobility activities that put less strain on their shoulders. The availability of new types of power-assisted wheels—not necessarily power wheelchairs— allows them to maintain independence with a lightweight chair that is still easily taken in and out of a car.

TC: Do you find that patients require longer or shorter periods of rehabilitation with Second Look?

DC: Usually shorter because our therapists are goal-focused, and an individual with a long-standing disability knows the specific issues that they want to work on. For those who come in as inpatients, because they are with us for shorter periods of time, we communicate with them more frequently in order to help move them along.

TC: How about degenerative diseases such as multiple sclerosis? It seems those conditions might be opportunities for “second,” “third,” and “fourth” looks. Are you checking into those areas as well?

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DC: We have, from time to time, seen individuals with disabilities due to things other than spinal cord injury, such as non-traumatic spinal disorders, including spina bifida. We’ve seen a few post-polio patients. We’ve had inquiries from our MS practitioners, although I can’t honestly recall anyone from there that we’ve enrolled into the Second Look program.

Some stroke patients may benefit from a second look, especially the younger ones whose life expectancy may be several decades.

Dr. Chappell contacted one of Dr. Chen’s patients, a young man named Jason in Decatur, IL, to hear how Second Look improved his quality of life.

TC: Tell me the nature of your injury?

 J: I used to race motocross, and I had an accident on a dirt bike, actually, on a triple jump. I broke my neck, C6, C7 vertebrae, incomplete. And I’ve got a lot of feelings and sensations in my legs and a little bit of movement in one of my legs. I don’t exactly know at what point I got that back, but when I first got hurt, I didn’t have that movement. I didn’t have any sensation or anything like that, but it’s coming back.

TC: When was the injury?

J: May 2002

TC: Right afterwards, did you have some feeling and no movement? Is that why they called it incomplete? Or did you have a little bit of movement?

J: I didn’t have any movement at all. They always called it incomplete.

TC: Incomplete means you had something, so you had some sensation? A lot of people, as you know, have complete injuries and they can’t feel or move anything below the level of the injury.

J: I have some sensation.

TC: What do you remember about your first time in rehab?

J: I just wanted to get the heck out of there. There were so many meds it was unreal. One day I was all right and the next I was sick. I kept getting pneumonia, which was my biggest problem. Once I got all that coughed out and they finally took the tracheotomy tube out, I got better fast.

TC: How long were you in rehab the first time?

J: From the end of May until September or October. I was in there forever.

TC: When you got out, how were things at home?

J: Horrible! That’s what was the worst. I didn’t want help from anybody, but I had to take help. I couldn’t dress myself. I couldn’t feed myself. Eating took so much energy. I couldn’t do anything for myself.

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TC: Can you bend your arms?

J: Now I can. My arms are fine. I got my triceps back. I can’t feel them completely. My left side’s a little worse than my right. I got my hands completely back, or my hand completely back on my right side, all my fingers and everything. They’re not real, real strong, but I got them totally back, I got everything back on my right side. On my left side, though, I still can’t move any of my fingers.

TC: Are you right-handed?

J: Left-handed, so I had to relearn everything using my right hand.

TC: How much time passed between your initial rehabilitation and your Second Look?

J: Maybe two-and-a-half years.

TC: What made you interested in what they had to offer?

J: They told me that they concentrate on certain things like dressing oneself, which I never paid much attention to the first time around, because I was ready to go home. I learned how to transfer from the ground to my chair. That was a big thing, because I’d fall a lot. So I needed to know how to do that. I fell in the shower a couple days ago, and I had to get myself back up, things like that. I’m always dealing with some kind of emergency.

TC: So you were able to get out of your bed into your chair the first time, but not able to get off the floor?

J: I could hardly do that when I first got home. I couldn’t even transfer. In time, I was able to do it with a transfer board. I kept practicing. But when I left there the first time, I could hardly transfer on my own.

TC: What were your primary goals when you went for your Second Look?

J: To dress myself, to get up off the floor and into my chair, and to use some adaptive equipment.

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TC: What were some of the ideas that the therapists at Second Look shared with you that you found particularly helpful?

J: How to use my tools. I’ve got mills, lathes and other equipment. I’m a journeyman tool and die maker, so I had most of that stuff before I got hurt. I talked to them about prosthetics.

TC: So you’re able to do most things that you did before?

J: I just bought a bench-top lathe and a bench-top mill, so I’m definitely going to start doing more. I just got that stuff here a couple months ago. I haven’t even plugged them in yet. But that’s something I really want to do, start making wheelchair parts, because often you’ve got to order them and then wait. Since I’ve got the materials, I can whip them up rather than waiting.

TC: So as a journeyman tool and die maker, you had a job there where you live, at a plant?

J: Yeah, I design tools now, actually.

TC: You have everything you need at home?

J: I do. Recently, I’ve made (replacement) aluminum parts for my electric chair, which I broke. There’s a little piece that holds the footplate up, and there’s a little rod that goes through it that has gears. I had to make the part that the rod goes through.

TC: What kinds of tool and die work have you been doing?

J: I still design tool and dies for the same company that I worked for before I got hurt.

TC: So you go to and from work each day? Get yourself in the car, drive and get in your wheelchair and go into the building, just like any other employee?

J: Yeah.

TC: Except that you’re not doing the same tool and die work as you did before, because that requires more standing around the milling machines?

J: Yeah, exactly. It involves more standing.

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TC: What about a lower bench, having those devices down lower so you could do some of the same work that you did before?

J: That’s the main reason why I got those bench-top tools. I can’t wait to use them.

TC: What about them lowering your work station?

J: They probably would, but I kind of like the idea of designing it myself, actually.

TC: Did you get a lot of benefit from going back for a “second look”?

J: I think so. The way I feel about it is, it’s mostly on me. They know what they’re doing there, but if you don’t have the drive to do it, it’s not going to happen for you. The main thing is having somebody there the whole time you’re trying to do the crazy stuff, like transferring from the ground to the floor or ground to the chair. That’s a lot of it.

TC: So what you’re saying is, you weren’t up for it that first time around?

J: That was a lot of it. I was just really messed up. They had me on so many narcotics. I was insanely tired, and finally I told myself, I’ve got to get off this stuff, because I was sleeping all the time.

TC: It makes you wonder if we shouldn’t delay the initial rehabilitation even further.

J: I know.

TC: Do you know how it was paid for?

J: I actually had Medicaid. They took care of it.

TC: Medicaid was willing to pay for it when you went back for your reevaluation?

J: Amazingly. I figured it was going to be hard.

TC: To some extent, it’s considered to be a new treatment, a new idea, and Medicaid really is resistant to pay those. Did you go into it with high expectations, and if so, were they met?

J: Actually, I was amazed that we were able to get done what I wanted to get done. I just ran out of time, basically. If I had time, I’d just keep on doing it six months out of the year if I could, or every six months or whatever, if I could. When I don’t do that kind of intense exercise and stuff like that, I go downhill a little bit.

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TC: Are you not able to do a lot of it on your own?

J: Transferring from the ground is the thing. I don’t get to do that unless I fall.

TC: And then you have to do it. What about other forms of exercise? I realize your arms are getting a pretty good workout, since you don’t have your legs. Do you do anything beyond that?

J: I use a glider for exercise, and I have braces from the Jaipur Foot Organization, along with parallel bars that we built out of a water line anchored to the concrete out in my garage.

TC: You get up out of your chair and into your braces and hold yourself up on the parallel bars?

J: Yeah, and it works. I do that on my own. I went to therapy here in Decatur to learn how to do it. Once I did it a couple times, I knew I could do it here. Actually, I feel safer here than I feel there.

TC: Would you recommend Second Look to others?

J: Definitely. But you’ve got to want to do it, that’s the thing.


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