Living With Incomplete Spinal Cord Injury – A Patient Interview With Karla

It is estimated that around 65% of spinal cord injury patients experience incomplete spinal cord injuries. The impact of an incomplete spinal cord injury is somewhat different from a complete injury. The American Spinal Injury Association uses a grading system to define these differences. Karla’s injury is defined as an ‘ASIA C’ injury, meaning that “Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade less than 3”. Essentially, this means incomplete spinal cord injury patients usually retain some level of sensory and/or motor function below their injury level. Epidural stimulation can be especially effective for these patients, and Dr. Nasir spoke to Karla about her experiences and the benefits which she saw from her treatment.

Please could you introduce yourself?

Ok, well I was injured in 2002, C6-C7, it was a car accident. I was walking down the street and I was hit by a drunk driver. I’ve been injured for close to 20 years. Since then, I’ve done a lot of physiotherapy. I recently traveled to Bangkok for epidural stimulation treatment for my spinal cord injury. I have incomplete quadriplegia and complete loss of motor function in my lower limbs. My MRI scan findings showed a lot of scar tissue formation over the spinal cord, which is a classic feature of chronic spinal cord injury, whether it’s complete or incomplete spinal cord injury.

So since your injury in 2002, what kind of changes did you see before you came for treatment with Verita Neuro?

Most of my recovery was more sensory. So it wasn’t the way it is now, but it was a little bit like I could feel if someone touched my leg, my feet, my toes. But it’s different because I couldn’t feel pain, I could just feel touch, or if you scratched my skin. My skin felt numb. So it wasn’t 100% sensation, just that it returned a little bit. As for a motor function, I don’t know exactly because I’m not really good at knowing what muscles work what, I just know that I gained the ability to at least do some training with leg braces. So I know I had a bit of the core function, which wasn’t completely good, but it was okay. I think I had a bit of glute function and also a little bit of tricep.

Did you get any major procedure apart from physiotherapy prior to your epidural stimulation treatment?

I did do an exercise recovery program between 2007 and 2011. It was actually because of that, that I became able to do the brace walking and it gave me a bit more function. The recovery program was similar to what you guys do only instead of the stim being inside, it’s outside. They would do Functional Electric Stimulation and so I trained to walk with electric stimulation, but on the outside, not the way it is with this one. But it took a lot of training, and I had to travel to Ohio to do that.

Karla so what was your initial experience? How did the surgery go and what did you feel during the post-operative recovery?

When I arrived at the hospital, everybody was really nice and welcoming. The room was really nice. Then I got the opportunity to meet you [Dr. Nasir] and the surgeon and some of the medical staff and got answers to my questions. The team explained a bit more about what to expect. I had to go through some tests, to make sure I was able to get the surgery. Then I spoke with the surgeon who was very nice and he was helpful in answering my questions too. I had the surgery 24 hours after I arrived, I think it was roughly that. I remember waking up and resting for a bit and then I met the therapist to see if the stim worked.

For me, it’s different because I have sensation, because my diagnosis is incomplete spinal cord injury. That’s why it’s hard for me to explain this because I could feel – I felt the electricity. It was surprising, I guess, just to see the legs kind of do their little movements. The feeling was surprising because I didn’t expect to feel the stim the way I did. It was interesting when it started, I was very impressed and looking forward to doing the treatment. I was a little bit nervous because I knew what to expect but when someone’s telling you it’s different from when you actually go through it. Luckily I had very good therapists – everybody is very, very nice and patient with me.
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The most important part of the treatment after the implantation is mapping (tailoring the stimulator to your body). What was your experience in terms of mapping?

First, it starts off in bed and the therapists had me turn it on. They had a little tablet and they would see what functions with the stim I guess. Then I would have to focus on trying to see what I can do. I can’t really describe it.

No problem! People would also like to know about your stem cell treatment.

So there are I think two or three injections? One is on the arm and two are in the lower spinal cord. I’m not gonna lie, it was a bit painful the first time, but when I told the team, they gave me something to help the pain. It wasn’t that bad – I guess the pain was a bit much at first but then like I said, because the doctors are very nice and patient, they’ll adjust your position, they’ll make sure you’re okay, you’re comfortable. The nurses will hold your hand just to make sure you’re okay. They will give you something to help with the pain.

So the doctor would do the injection and then you spend I think six or seven hours lying on your back. It wasn’t bad, it wasn’t anything. The only thing I notice is that you do feel a bit of burning sensation and tingling and eventually a little bit more spasming, but the stem cell treatment part was not significant. It was more afterward, you start to feel more spasms and little things that happen afterward. But during the actual stem cell part, it’s easy.

Maybe you can share a little bit more about the changes you saw? Can you tell us a little bit more about your initial recovery period and the first movements you saw coming back?

I think it surprised me when we were doing the mapping to see my ankles and my feet move. As we continued the mapping and the stem cell treatments, I saw my knees being able to lift up, and this is something that at the time I hadn’t seen in 18 years. So I was surprised. I shouldn’t say I was surprised because, you know, this is a good program, but because I didn’t know what to expect, I went into there thinking that well, I’ll just come for the experience and then whatever happens happens. But I wasn’t expecting much because I have to be a bit realistic that it was 18 years since my injury. Everybody says after some time you don’t get anything back, so I was surprised how quickly things started to happen.

At first one leg, I think my right leg, was stronger than my left leg. The left leg took time to start lifting but then eventually I was able to use the stationary bike. Just to be able to do that was very impressive. I wasn’t expecting that. Then I could stand up and take some steps with the stim and be able to see my knees lift. In the past when I’ve had KAFOs (knee-ankle-foot-orthoses) you’re just kind of pulling your leg and doing a bit of lift, but with epidural stimulation, to feel your knee going up and going back down I wasn’t expecting that. So that was pretty incredible. I think my sensation improved. It was really impressive. I know I’m using the word impressive a lot but it really was.
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That’s great. Since you've been discharged from the hospital, which is I believe I was six months ago, how are you doing?

Well, I have been able to follow a lot of the exercises that I did over there, especially in the wheelchair, with the knee lifting and extension, and doing core exercises. We incorporated more exercises into my program, because of the gains that I was getting. The reason I knew about my gains is because my sensory function increased, that was one of the main things that came through really strongly. So my ability to feel the stim is even more than before.

I do the bike program, I do the stepping program. I have the walking frame for that and I have a treadmill. I go to physiotherapy but mainly my exercise is here with my personal trainer and my dad. A lot of the stepping program is actually outside right now and doing the exercises there. So I’ve been able to follow the program and do more, just because there have continued to be improvements, so we’re trying to work with those improvements and combine them with the Verita Neuro program. So I think it’s been actually really easy to follow the program.

So maybe you can elaborate - let's start with maybe your walking and stepping. What can you do? What are some of the limitations you're facing?

The treadmill is always a really hard thing to do. I can be on the walking frame with the harness. With the program, I can walk forward and I could actually take steps backward too. My left leg still goes out a bit so we’re trying to train my leg to be more straight and not go out so much. I’m starting to learn how to take longer steps. When I’m on the treadmill, I need help to make the extra push to make the steps longer. If I’m walking on the ground or outside or in the garage, I can take the longer steps. I find that at the beginning of the walking, it’s hard for me to lock my knees but when I continue after a few minutes it starts to lock so that’s an improvement.

The only limitation is that I spasm more, so I have to stop and really relax to stop it. I’ve had a lot of improvements with the walking. On the bike I can push the pedal. I need a bit of assistance for the last little bit, but I’m able to push and do a full circle. Right now, I’m learning how to pedal backward for the hamstring but it’s still very hard because it requires a lot of that muscle. My core is improved and I’m able to do a bit more of the bridge by myself. Someone helps me lift up and then I can hold for a little bit by myself. Maybe only a few seconds and then I have to let go so that’s been an improvement. I’m also able to lock my knees for long periods.

Have there been improvements to your cardiovascular function or your other autonomic functions?

I sweat! Actually, that is surprising for me – that’s kind of embarrassing to admit to – but I do sweat on my feet now and my legs and if it’s really hot, and I’m in a wheelchair and I get off the seat. This is good because with my injury being incomplete spinal cord injury, we tend to sweat above the level of injury so now it’s good I’m able to sweat more over the whole body. My blood pressure has gotten better. Before with the stim, it used to go up a lot, from really low to really high. Now, it’s been very stable, it stays almost the same from the beginning of therapy to the end. It usually doesn’t fluctuate too much. We’ve also been monitoring my heart rate while doing the treadmill and my heart rate’s able to recover faster. If it goes up to 110 it can recover back down below 100 fast, it doesn’t take time and that’s what you want.

In terms of bladder and bowel function I’ve always been able to feel when I have to pee, I’ve always had that sensation. I’ve been able to start holding it in – when I was in Thailand, I had to pee during the walk, I would wait 20 minutes just to see if I could hold it in, so I can hold it in longer as I guess. My bowels are the same thing, I’ve always been able to feel when I have to go. But in terms of actual motor, like being able to go to the bathroom, no, I require catheters and stuff.

So would you like to tell us a little bit more about your functions which you're able to do, even when the stimulators are turned off?

I’ve been waiting to talk about this, I actually am very excited about this. I can kick without the stim! Before we needed it for me to kick and I would have to really focus. The latest has been I don’t actually have to do that so much, especially on the right side. I tend to focus on my calf muscles and then I do a flexion, so my heel goes up and my toes go down. I focus on that and then I can do the kick now because I’m focusing on my feet, my ankle and my calves. So that’s been another good improvement is that I can feel myself squeeze my calves.

My therapist can feel the contraction and said that she knew when I’m going to move my leg because my toes curl first. That’s because I’m trying to focus so my toes will curl. With the right side, I’m also able to control when I do the push, I can control the knee locking. So now I could do the push, extending my leg, and I can do a kick without the stim. When I do the I’m standing up and lifting my knee exercises, I no longer use the program for the knee lift, I just use the spasm program to stop the spasming. So it’s been good.

So do you have any message for complete or incomplete spinal cord injury patients who are listening to you?

I do think this is a very good program, I think it’s definitely worth going and giving it a try. I’m not going to pretend there are any guarantees, but so far I’ve had a lot of positive recovery. It’s enabled me to do things I couldn’t do before. I do exercises I didn’t think I could ever do with or without the stim. It’s just the fact that I’m able to do a lot of these exercises, like the bike and going to pull in all that stuff. It’s something that I would never think I’d be able to do, so I think it’s because worth trying out!

The above is not a verbatim transcript of Karla’s interview and the exact wording and order of words has been edited to be read more easily. You can watch the full interview on our YouTube channel.


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