A Story of Surfer's Myelopathy

Updated: Oct 24, 2019

Earlier this month, I had the opportunity to interview one of my former patients I had the pleasure of treating while working as a contract PT at Kuakini Medical Center in Honolulu, Hawaii last spring, 2018.


Sandra is a 22 year old from Zurich, Switzerland. In January, 2018, during her solo travels around the US, she stopped in Hawaii prior to her return home. While on the island, she decided to take a surfing lesson for the first time, as many people do. During the lesson, an unfortunate and extremely rare event had her paralyzed from the waist down. Never having been hospitalized before, she opens up and tells us about the entire experience in a real, raw, and vulnerable way.


She talks about how she overcame depression, shifted her mindset, and is now in a place where anything is possible. Her never give up attitude and unrelenting bravery is something for everyone to truly admire.

Surfer's Myelopathy is extremely rare diagnosis, with only 64 cases recorded to date as of October, 2015.(1) To learn more, check out the Surfer's Myelopathy Foundation at http://www.smawareness.org

Jennifer:

Hi Sandra, how have you been? 


Sandra:

Great actually. I mean, the first few months after coming back to Switzerland were a bit rough, but I’m good now.


Jennifer:

I'm glad to hear that. So, we’ll get started by having you tell everyone a little bit about yourself.


Sandra:

My name is Sandra. I’m 22 years old, from Switzerland. At the moment, I am in an Integration Program for people with disabilities who had accidents of sickness just to prepare for work or student life, to build up working hours and everything, just to get used to this. The program ends on Wednesday and in September, I’ll go to Uni to study International Management. 



So, as you know, in 2018 I had my accident. A hyperextensional  trauma to the spinal cord, which led to me being paralyzed from the waist down. I’m still using a wheelchair full-time. I’m doing everything on my own without help from other people, so that’s great. There is progress. I got some motion back, and some stability. I can stand a little bit, mostly due to my spasticity, which is very strong. But still, better than nothing. 


"A hyperextensional trauma to the spinal cord, led to me being paralyzed from the waist down."

Jennifer:

Yeah, so tell us a little bit about exactly what happened in 2018. 


Sandra:

I was in Hawaii taking my first surfing lesson, and everything was going great. I was able to stand up and everything. But then a higher wave hit my board from the front, and I fell backwards off my board, and over-bended or overstretched my back. 


"I was in Hawaii taking my first surfing lesson, and everything was going great."

In the beginning I felt pain in my back, but I could still feel my legs and everything, everything was still working. And after a couple of minutes, I couldn’t get back up on my board. I felt pain in my hips, and it was harder for me to pedal with my legs. 


So, the instructor helped me out of the water. When I tried standing up, and it was just really hard. It was like I was really, really sore after doing a lot of exercise. And then I collapsed. The people there helped me onto a chair to lift up my feet to get my circulation going because we thought that was the problem. 


"I was quickly diagnosed with Surfer’s Myelopathy."

But then the pain started everywhere. My nerves were hypersensitive. Every touch hurt like hell. And that’s when we called an ambulance, and I got to Kuakini Medical Center. 

There, I was quickly diagnosed with Surfer’s Myelopathy. Which is like, if you don’t have a lot of muscles in the back, the motion that you do on a surfboard while pedaling can trigger the hyperextensional trauma, I believe.



Jennifer:

It's also a super rare diagnosis, correct? 


Sanda:

Yeah, I think there’s only about 50 something people in the world who’ve had this happen to them.


"There’s only about 50 something people in the world who’ve had this happen to them."

Jennifer:

So what was going through your mind when you were at the hospital- are you confused?


Sandra:

Yeah I didn’t really realize what was going on because it was very surreal to me because I’ve never been in a hospital before, I’ve been luckily very healthy up until that point. I just thought well, I’ll be back in my hotel room by tonight, everything’s going to be fine.

And then, I think it first hit me when I realized I would have to call my mom and tell her what happened, and I didn’t really know where to start because, how are you going to tell your mom that you can’t really feel your legs or move them at all? That was the first really hard thing for me to do. 


The next day, a neurologist from the hospital really took his time to explain what everything meant and that I would have to go to a rehab center. That it was more like, permanent. That we couldn’t really know what it really meant for me in the long term.


It started hitting my slowly but I was still not fully aware of what it really meant, not until I came back to Switzerland after two weeks and then realized where I was, where everyone was in a wheelchair. That was the hard part. 


"I was still not fully aware of what it really meant...until I came back to Switzerland after two weeks."

Jennifer:

And then how did physical therapy play a role in all of this?


Sandra:

That was the biggest part of rehab here for us, and I had different types of physical therapy. Like, the traditional one. Also, I had physical therapy in the water, warm water. And later on, horseback riding was also part of it, with therapy horses. 


"I learned a lot about my body from my therapist."

It was really the most important part for me, because I learned a lot about my body from my therapist, how it worked, how I could use certain exercises to help the healing process along. It also helped with a lot of side effects I would say I had from being paralyzed. 




Spasticity was a very big topic for me because it was very strong, it still is. It was also very painful because my muscles were always flexed which led to a lot of pain. Even though I didn’t feel as much as I used to, it still hurt.


So yeah, we did a lot of stretching but also exercises just to help me become more independent in my wheelchair and not have to rely on the nurses or later on my mom, so that I was just able to do everything on my own.


It really helped me also develop the feeling for my body, to be able to listen to my body, and see the signs when something’s not okay. 


Jennifer:

And do you have any moments that you remember with your therapist that were really joyful for you?


Sandra:

The first time I was able to stand up with a table was really great. It felt strange because you’re always sitting or lying on your bed and suddenly you’re on eye-level with everyone again, it was great. And also, I had a lot of strength in my lower back still, so I was able to sit freely very quickly which a lot of other people couldn’t. So that was also really nice to have that.



Jennifer:

Yeah, I think I remember seeing the photo of you standing with the table. That was super exciting. That was in the rehab center in Switzerland, right?


Sandra:

Yeah, I put that up. I have a table at home now, so I try to stand up every day for at least 30 minutes.


Jennifer:

Oh, very nice, and do you have a physical therapist still?


Sandra:

Yes, I still have physical therapy once a week. We focus more on like, weekly problems that occur. I have some problems with my shoulders because of rolling around and sometimes also with my lower back because of the spasticity. So, we do a lot of stretching. 


Jennifer:

Did you get a chance to use any other types of technology to help you stand and walk?

Sandra:

Yeah, we used a lot of electricity pads that you put on your muscles while standing and there was also a machine called Motion Maker- it sort of looks like a gynecologist chair- where you kind of like bicycling with your legs with help from the machine and it sort of measures how much of it comes from your own and how much help is required from the machine.


That helped a lot in the beginning but later on we couldn't do that anymore because my spasticity was too strong so my legs kept stretching. 


Jennifer:

Are you meeting with doctors to see your progress along, and what do they say as far as their expectations and how you’ve been doing?


Sandra:

They’re very careful as to not give you too much hope. But we have yearly appointments at the same rehab center where I was, always with the same doctors. They always measure your ability to move your legs- they call it the muscle status here. I just had one today, actually, and there was improvement again, which is great. Not too much, but still. 


And my physical therapist believes that I could be able to walk independently maybe a few steps at least. But, she’s also very careful to not start with that too early because she believes that if I push it too hard, I could end up with more back pain which could slow it down again. But we’re still working on it.


The doctors are more saying yeah, probably not, you’ll probably have to rely on your wheelchair until I don’t know, the rest of my life. 


But, I think they don’t really have the same ability to observe my situation as my physical therapist. So, I trust more in her than my doctors. 


Jennifer:

Because they’re with you a lot more, yeah?


Sandra:

Yeah, exactly.



Jennifer:

And have you taken any steps?


Sandra:

I mean, as I’ve said before, I can’t stand up with my own muscle strength but with spasticity, because it’s so intense. And I have to always hold on to something because I don’t really have the balance and the core strength to stand upright.

But when I stand up or when I’m in the water, I can move my legs, I can take a few steps but it’s still not of my own muscle ability. But it’s still something, and it feels very good when I’m able to stand up and move my legs. So, something that wasn’t possible a few months ago. 


Jennifer:

Yeah, very nice. That’s awesome. And then what about your mindset? How have you been keeping yourself positive- do you have any sorts of things that you think about to keep yourself going? 


Sandra:

During rehab, it was really hard for me. I was really depressed a lot of times. Even though I had a lot of people that were my same age there. When we were together we were sort of talking about what happened but not really in depth because everybody had their own problems and their own way of dealing with it. 


It was after leaving the clinic that I was able to really process everything that happened because I stayed at home for two months before I started this Integration Program. 

At first I also though very down and didn’t really see the point of going on because life wouldn’t be the same any more. 


What really helped me get out of that was social media actually. There’s a big wheelchair community online, especially on Instagram. There’s so many people that are in different phases of their progress that are able to just inspire you, to show you how they're doing, what they’re doing, what is still possible like sports, or work-placed related.


So, I was able to picture myself in their place. And I started meditating on a friend’s recommendation. At first it was really hard, but it really helped my reflect on what happened to me and reflect on the progress I made so far. 


I didn’t even realize it myself because you see yourself everyday. It wasn’t until I met a friend of mine, whom I hadn’t seen for six months and she was so impressed by the things I had leaned and the things I could do now on my own that I always needed help with before. 

And that was also a very moving point for me because I saw from her point of view how far I’ve come and I always try to think about that now because everyone has bad days but they’re a lot lot fewer than they used to be. 



Jennifer:

Awesome. Do you have anyone in particular that you look up to?


Sandra:

My peer counselor during rehab, she was amazing. She had a hiking accident. She was just so overflowing with positivity. Any problem or challenge I had, she was able to push me in the right direction and show me that still, so much is possible. 


In the beginning you always feel like, oh my god, I can’t move my legs; I can’t do this, I can’t do that… 


"In the end, it’s not really that different."

But in the end, it’s not really that different. Of course, you have to be able to adapt and to be flexible but the bottom line is, almost everything that was possible before is still possible you just have to open your mind to it. 


"The bottom line is almost everything that was possible before is still possible, you just have to open your mind to it."

Jennifer:

I love that. Is there anyone that is doing things that at one point you didn’t think were possible, now you’re seeing these people doing? 


Sandra:

Yeah. During rehab, it starts small; you see people doing a transfer from their chair to their bed without any help and you think, oh my god I can never do that because it’s so hard. Then a few months later, you’re able to do it yourself. 


Everything’s been like that so far because I didn’t know about the opportunities in sports for example. I didn’t know that you could play basketball I was really informed about that. And then there were these Rugby wheelchair championships held at the rehab center here in Switzerland. Or basketball, or hockey, and you’re like, wow. 


I started to dive more into the Instagram community. There’s people travelling all over the world. I never thought Machu Picchu- I would be able to go there in a wheelchair. Then you see someone smiling and posing on top of the mountain. Then you’re like, oh, okay, it is possible.


"I never thought Machu Picchu- I would be able to go there in a wheelchair. Then you see someone smiling and posing on top of the mountain. Then you’re like, oh, okay, it is possible."


So, you just have to open your mind to it. And not be afraid to try out something new and to ask for help because that’s very difficult in the beginning. It’s just a learning process and you have to really let yourself do the learning. 


Jennifer:

Are you playing any sports currently?

Sandra:

I swim a lot, mainly because I like how I don’t have to focus on my legs as much and I can just use my arms. I also do arm cycling. I want to maybe get into basketball too. 


Jennifer:

Awesome. So one of our last questions is: what moves you- mentally and/or physically?


Sandra:

Participting in sports, going out and being with friends. Right after my accident, I was closed off and didn’t want to go out, which made me very depressed. But having friends and social media to keep inspired has helped me a lot. It allowed me to open up and sharing my story with others. 


Jennifer:

Do you have any other goals we didn’t talk about?


Sandra:

My goal is still to be able to walk again. I’m not putting too much pressure on myself, but my therapist thinks I’ll be able to and yeah, right now I’m relying on my spasticity and I hope to be able to continue to make progress with that.


Jennifer:

And how can people find you if they want to learn more?


Sandra:

On instagram @wheelwriter 



Surfer's Myelopathy is extremely rare diagnosis, with only 64 cases recorded to date as of Oct/2015.(1) To learn more, check out the Surfer's Myelopathy Foundation at http://www.smawareness.org


Source:


(1) Brett A. Freedman, David G. Malone, Peter A. Rasmussen, Jason M. Cage, Edward C. Benzel, Surfer's Myelopathy: A Rare Form of Spinal Cord Infarction in Novice Surfers: A Systematic Review, Neurosurgery, Volume 78, Issue 5, May 2016, Pages 602–611,


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