Spinal Cord Injury - Sean

In Sean’s Own Words

“I was very comfortable with Dr.[Justin] Brown. He explained everything to me and we discussed anything I was concerned about. I basically said, “Here’s my arm. Give me as much function as possible without losing as much as possible….When I was doing the research, I wasn’t super comfortable traveling for surgery. But after Dr Brown told me, he was going to the East Coast, I know he's the only doctor I would actually get on a plane to have surgery with.  If he said now, “Hey, I’ve got an idea. I want to do something.” I would book the next flight out there. I have every confidence in him.”

In September of 2001 I broke my neck playing high school football, in the third week of my senior year. That left me as a C5-C6 quadriplegic. I was competitive, skilled and in good shape before the injury.  After it, I was just incomplete. The spinal cord wasn’t severed, so I had feelings still throughout my body. I just couldn’t move from the chest area down. 

After that I did as much rehab as I possibly could, just to regain strength and get back to some sort of a normal life. I ended up graduating with my class on time later that year.

My goal was to get back into some sort of normal routine in life, and I ended up finding sports again. I played pod rugby for the local team out here which is sponsored by one of the hospitals. So with that I got stronger and I learned more about what I physically could do with such limited function: no hand function, no triceps but I still had some arm function. Knowing that I’d get back into sports again made life a little bit easier. 

I learned as much as I could about how to do the daily tasks again, the cleaning, bathing, cooking, eating, all the little stuff you’ve taken for granted when you could just easily open a refrigerator and pick something up. 

Without the hand function, I had to figure out how to open up the refrigerator and lift something out of it. I wanted to go as far as I could. It was about 12 years into my injury, and I finally decided to pull the trigger to have surgery done. It's always something that I knew about because I'd met other people through playing rugby that have had tendon transfer surgery. I just wasn’t ready to commit to such an invasive procedure and a recovery process. But I got to the point where I still wanted to do more but my body wouldn't let me. So I continued with my research to find the best possible solution for it, along with the best possible doctor. And that's how I came across Dr. Justin Brown. 

Immediately after my injury I had no surgical procedures to help my injury, except the surgery to fix the broken neck. So I just relied on what I'd learned from rehab when I first got injure, along with years and years of sports training. I pushed myself as far as I could, but you just have to work around what you can't do. 

I’ve met some of the guys from the New Zealand national team through rugby as well, the guys that got hurt playing traditional rugby and ended up playing wheelchair rugby for the All Blacks.  They traveled to the States to play for some of our teams out here. It's a global community and we all share as much knowledge as possible with each other. 

After I found Dr. Brown, I made the initial appointment to see what the options were. I knew through my research that there were a handful of different ways surgeries can go, but it all depended on what my actual level of function was, and what we could use in order to strengthen or give a return in another area. 

So I met with Dr. Brown to basically give him a blank canvas and said,  “This is what I would like to do. This is what I'm hoping to get in return from either a surgery or several surgeries”. 

And that's when we figured out a game plan. We found three or four different options that we could go with to not only restore some functional movement in my right hand, but also give me some sort of a tricep function as well in that arm. 

So going from zero hand function and zero tricep function, I would be happy with a little bit of movement. 

And I come to find out that I can now almost fully extend my index finger and my thumb. I have control over closing them. And Dr Brown gave me a partial triceps, even though its function is slightly different, but I can fully straighten my right arm out as I hold it over my head. But my left arm would not get anywhere close to that and would just fall and hit me.

But of course, I was not going to be satisfied with just that. We might as well go a little bit further. We did one more surgery after that and that gave me a strong pinch between my thumb and my index finger. Now I could open up the refrigerator, and I could open my hand just enough to put around something and then I could pinch and close it, so I have some sort of a grasp. 

He did amazing work with shockingly little function that I had. I say it’s a little function but I’ve definitely met people with less function than me. I didn't think I could get it done, but he was extremely confident and he said, “Yeah, let’s do it. “

The first surgery we did was a nerve transfer where I believe he took a nerve from the back of my left leg. And I believe we used that to lengthen the nerves for the triceps. And then we did a nerve transfer in my wrist which gave me the ability to open the index finger and the thumb and then control the closing function of it and that allowed me more, dexterity-wise. And then after that, we did the tendon transfer and it was the last forearm area that gave me the pinch. 

Recovery period has to be taken slowly. I had to be patient.  But for the most part, I was able to move relatively freely either the next day or a couple of days after surgery. It was just hard to slow down again when I was going so fast before the injury.

I have noticed daily life activities are a bit easier. Now, when I reach over to grab something like a cookie or a cracker or a drink or something, I can actually pick it up with one hand instead of having to use two to grab it most times. I can lock my arm out and reach something on a higher shelf now where I wasn't able to reach as high before because my arm couldn’t extend. 

But it’s the little things that we wouldn't have noticed before that make such a huge difference. And as soon as I started noticing the little things I could now do I immediately said to myself, “Why didn’t I do this sooner?” 

I've actually had people reach out asking me about the surgeries on a couple of support groups online and on Facebook. A lot of people have been looking into it because they have heard of options like this. Well, I say it worked great for me. I say that they always have to speak with the doctor performing the surgery or reach out to Dr. Brown. 

I always tell them, that every situation is slightly different because every injury is different. My recovery isn’t going to be the same as someone else's. Just because something worked for me doesn't mean it can work for you. While I want to give someone hope and excitement there has to be that level of understanding that you might have a different experience. 

But you also have to make sure you have support around you and in place and be able to take time off from whatever you're doing in order to recover. Because if you go into this not fully mentally prepared, you might end up rushing your recovery or injuring yourself and not getting the full benefits and output that you would want or hope for 

And it's also a very slow process in the recovery especially with the nerve transfer. You're not going to get instant results. At least, I didn't and everything from my research said that. The results are going to take time for the nerve transfer. So you just have to be patient. 

With the tendon transfer, it was relatively immediate that I noticed a difference. But it still takes time to build that strength up and then the new muscle memory of “Oh, I could do it this way now, instead of the way that I've been doing it for 12 years.” 

I chose Dr Brown because I found that he was the best surgeon, not only the best surgeon for this type of injury, but also the best surgeon in my area. I was very fortunate that he was here in town at that time when I decided to pull the trigger with these procedures. 

I did talk to a few other people in the industry, whether they were doctors or physical therapists or trainers. A lot of them were excited to see my results from the surgeries because they’d only heard rumors of things like this.

I was very comfortable with Dr Brown. He explained everything to me and we discussed anything I was concerned about. I basically said, “Here’s my arm. Give me as much function as possible without losing as much as possible.” 

When I was doing the research, I wasn’t super comfortable traveling for surgery. But after Dr Brown told me, he was going to the East Coast, I know he's the only doctor I would actually get on a plane to have surgery with.  If he said now, “Hey, I’ve got an idea. I want to do something.” I would book the next flight out there. I have every confidence in him.

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