IAmA paraplegic who was paralyzed from the waist down after trying surfing for the first time. I suffered an injury called Surfer's Myelopathy. No broken bones, pinched nerves, or surgeries. AmA about Surfer's Myelopathy, paralysis, and life as a ...

I have re-submitted this AMA since I was having trouble with the first one. I'll copy the one question I managed to answer here:

Q:Could you describe what actually happened? Forgive the ignorance but did you immediately feel something was wrong or did it take some time?

A: I went to stand up on the first wave I caught. Thought I had tweaked my back. Went back to shore to lay down and started having intense pain in my lower back all the way down to my toes. Tried walking to the street to catch a cab back to the hotel to lay down but could not make it more than a few hundred feet. I was in an immense amount of pain so we called an ambulance. By the time I was in the hospital I was totally paralyzed from the waist down, with absolutely no sensation besides the burning of nerve pain.
All in all it was about 2-3 hours from when I went surfing to when I was totally paralyzed.

Was this "destined to happen", meaning was it a genetic trait that caused it or was it just something tweeked when you went to get up on the board?

It happen because I tried surfing.

They told me that certain people could be genetically more likely to suffer from it, but the fact is if I never got on that board then I would not be paralyzed today.

Was it the motion of getting up? Like a "burpees" movement to get to your feet?

My question is, could this have happened on land but is more associated with surfers because it happens to them more often?

Nope simply from laying on my stomach and extending my back. It can definitely happen on land though, some people have gotten it from yoga, Pilates, or even studying on the floor. It's called Surfer's Myelopathy because it's most commonly seen in first time surfers.

I'm so sorry this happened to you. I surf and love it so much. Would you go again, knowing the risk?

I mean I might, it's not really a common issue, you have a better chance of being bit by a shark. I think I would refine my technique however.

Have your views on the handicapped changed? I mean in a political or social sense? ADA compliance and that sort of thing can be mocked by youth or the able bodied because it may sound like extra effort for little gain.

I have done a lot of work with disabled vets so I have had some experience with that side of things before I got hurt.

Of course I am now all for ADA and universal access, but I don't take it personally when people / places are not on board. I'm a realist and know that most decisions like that are driven by money.

So how does this happen? Like what should i avoid doing if i surf for the first time?

Avoid laying on your stomach with your back arched for long periods of time. Like when you paddle a bunch make sure to stop and take breaks every once in a while.
They're (scientists? doctors?) not totally sure what causes it, they think it might have something to do with warm water and recently traveling on a plane.

Most cases happen in Hawaii and Japan I believe.

So weird man sorry this happened to you.

Yeah shit happens, most days I can manage though. I think talking about helps in some weird way.

I'm guessing this is a permanent condition? Cause that really blows.

No one really knows, though it's likely pretty permanent. Some people fully recover in a few days, other are paralyzed for life.

I have trouble going for the warm water explanation...

There are cautions for flying and diving, so there could be a relation there.

Is this considered a spinal injury (and if so, what vertebra are involved?) or brain related?

I assume MRI, CT, Ultrasound, Angiogram has been done? Results?

It's considered a spinal cord injury. The best explanation they could give me is that laying on my stomach with my back arched for too long pinched a blood vessel in my spine, which cut off oxygen to my spinal cord. They did x-ray, and MRI but not much else. On the MRI you could see the little spot on my spinal cord that had died due to lack of oxygen.
As for what vertebra, my injury is around the T-9/T-10 area. I believe it can differ from person to person based on their different anatomy.

Noted.

Curious why no further testing.

Is the prognosis permanent?

They didn't do any more testing because they figured they knew what it was, and didn't think that doing any more tests would yield any results. My status wasn't getting any better or worse, I was pretty stable fairly fast after the injury. Much faster than most people who have SCI's.

The way they explained the prognosis was that some people have complete recovery, and walk out of the hospital in three days, and others are totally paralyzed for life. I'm leaning towards the latter option for me, since it's been over a year since the injury and I have not seen any changes in my paralysis at all.

I have done some hyperbaric oxygen treatment though, that was interesting.

Have you gotten second or third, fourth opinions?

Sort of. I saw a neurologist at the first hospital I was in, who originally diagnosed it as SM. Then I was transferred to a rehab hospital for SCI's where I was handed off to a second neurologist. There I had a team of sorts who seconded the diagnosis. After that I met with a doctor who OK'd me for hyperbaric oxygen treatment. Did that for a while. Since then have met with one other neurologist but have not had much more done in the way of testing.

Have you looked into any of the experimental therapies? i.e. stem cell?

There is a new drug being tested now that is showing great promise in regenerating, or stimulating specifically, damage nerves to repair/regenerate.

Stem cell is still in the early stages of research right now, most treatments are more likely to give you cancer than actually help you. I get all the articles about new drugs and new treatments (like VR and shit) being forwarded to me by well meaning family members, but I don't really ever read up on them. I know they mean well but it kind of stings when grandma sends me an email about some random place nearby that is experimenting on rats and having mild success.

Any chance areas like Hawaii might have doctors that are more familiar with this condition? Holy crap this is so scary. I hope you recover. Seriously. I can't even imagine

Eh there are some in HI that have written papers on it. I did meet one in the hospital who had. It's just so rare that they don't really know much about it.

Honest question, how do you prevent pressure ulcers? Have you ever had one? I ask because I treat a lot of them.

Im sorry this happened to you. But I have to say that you are very brave for doing this AMA. I hope it helps. And I have seen plenty of paras who live beautifully.

Protect your butt!

When I'm sitting in my chair I have to always make sure to do weight shifts. So I'm constantly moving around and thinking about getting pressure sores.

In bed I make sure to pad myself with pillows and switch up which side I'm sleeping on constantly.

Thank goodness for you!!! Seriously, as a wound care nurse, I commend you. Do you have a roho cushion?

also thank mr skeltal for good bones and calcium

doot doot

No I actually have what's called a Java cushion, they're a smaller company out of I think Florida. Nicknamed the grand ballroom cushion because there's a giant hole in the middle of the seat under my butt haha.

My daughter, 16, had incomplete paralysis due to spinal surgery and her screw cracking her l4. She's been inpatient for over a month now and going to rehab inpatient soon.: she's had 4 surgeries and now is dealing with a wound infection and packing and repacking. Has had a catheter in for a month, also has bowel issues. She has slowly recovered some sensations and movement in her right leg, mostly, and very slowly her left is responding to touch and very slight movements. My question is they seem to push her so hard to recover faster.. trying to get her on bedside commode before she can stand up (she can sit on edge of bed now) she does have very limited movement in both legs and actually put weight on her legs today for over a minute but most of that was upper body strength:: I get the idea that she needs to work really hard.. but why this almost disbelief that she is working as hard as she can to recover.:.. it angers me.. and her.. did you deal with anyone pushing you so hard you felt like giving up? Do you have any advice you can offer her for her long road ahead.: I know it's different but I don't want her to let depression kick her ass when she's already down. Any thing in particular that helped you when you felt really down?

I think part of the reason they push you so hard in rehab is because they know that you can't do it yourself. It really does help to have an outside motivator. I don't know how hard they're pushing her, but if she's in a good hospital I would trust the experts.

When I was in rehab my days were chock full of things to do, from wheelchair class to meetings with doctors etc etc, I hardly had much down time to feel bad for myself.

I did as much as I could and more when I was there because of the amazing support I was receiving, I think it would have been much harder to figure out how to live this new life were I in a different environment.

Thank you. Sometimes I think it's too much but sometimes I think it's just right. She's a strong willed child.. so I have high hopes. Good vibes for you on your journey. Thanks for doing this AMA.

Thank you! It sounds like she's doing well in rehab and with such improvement it's usually only a matter of time before some sense of normalcy is restored.

I never had an interest in surfing, but now I'm 100% sure I'll never go surfing.

What was the adjustment like? How long did it take you to accept that you are paralyzed?

I mean you're more likely to get bitten by a shark :)

The adjustment is an everyday thing, something you have to deal with in every situation you find yourself in.

I did go to a rehab hospital for a month inpatient, and also did outpatient for another month.

I've been surfing my whole life and teaching for 14, I had never heard of this before. Way more likely to get paralyzed diving under a wave and going headfirst into a shallow sandbar.

More likely to get bitten by a shark TBH

Can you feel your penis?

Nope.

Can I feel your penis?

( ͡° ͜ʖ ͡°)

How long into the recovery process was it when you started to think about this aspect of the injury?

Pretty early on. I remember the first night I had a hospital room to myself I tried to get a hard on, to no avail.

Did you ever talk to any doctor or nurse about this specific thing?

I'm sorry you've had to go through this man

Yep. I got the talk from one of my first doctors about still being able to have children.

Then I went to see another doctor about getting something to at least make my dick hard. It's an injection called trimix (because it's a mixture of 3 meds) that you shoot into the soft tissue of your shaft to get an erection. It works really well but I haven't been able to get any sort of release from it :/

[deleted]

I've been pluggin' along. Trying to keep active but it's hard.

I've always wondered.. Does being paralyzed from the waste down inhibit testicular function? By that I mean, are they still producing testosterone?

Also, how has your sex drive been effected? Do you still get turned on and just have to deal with it?

As far as I know there really isn't an effect on testosterone production.

And yeah I get turned on now and again, it's something I kind of have to just ignore and move past. There's no release or anything so trying is kind of pointless (not that I haven't tried.)

Are you in school? What do you hope to do in the future?

I'm not taking any classes right now. I hope in the future to be able to work with people and computers, because I seem to have a knack for them for whatever reason.

I also want to get into FPV quadcopter flying, I've only ever flown tiny toy class drones but I want to build something really powerful and soar around the sky.

1. How did you manage to come to terms with it?

2. What helped you to not be depressed or angry about what happened?

3. What is your favorite type of beer?

1: I don't know that I have. Part of the reason I'm doing this AMA is so that I can get my thoughts and feelings down in writing easier. "Coming to terms" with something like this to me is something that I have to do every moment of every day. Every interaction I have with other people reminds me that I'm different and I have to constantly work to overcome that. Whether it's just ignoring some people or talking to others, it seems that every situation is different and calls for different means of coping.

2: I am very depressed about what happened. I was dealing with depression for years before I got hurt and as you might be able to imagine getting paralyzed did not help in the slightest. I know in the back of my head though that you have to take each day and each moment as it's own challenge and overcome what's directly in front of you. Don't waste time and energy thinking about what might happen in the future because if you do you will die a thousand deaths every day. Realize that in this moment, you can choose to be happy or sad, and you, only you, are the one in charge of what happens inside your head.

3: I am partial to lighter wheat beers, there's a place near my work that sells an american wheat hefeweizen with a slice of orange that is super good. I like most kinds of beer though, my dad is the kind of guy who won't say no to any beer, even though he normally just drinks PBR or Rainier. Ooh the Canadian Kokanee is pretty nice and cheap too.

I hope you the best of luck in your journey. I know this probably doesn't mean a lot to you since I am a stranger on the internet. But you have gained my respect.

Cheers! Positive vibrations always make me happy, and I try to send them back tenfold :)

I have to do it.

Is your surfer name "Bob" now?

Hope it makes you smile or at least grimace and roll your eyes.

Haha I don't really have a surfer name, I was never a surfer before I got hurt and now especially I'm not much of a beach person. But I do appreciate the attempt at humor ;)

Do you know of any other Paras who have developed ways to deal with the issue of sexual release? I'm not trying to imply that this would be a substitute for your junk working. I was just wondering what coping mechanisms people develop.

Some people have varying levels of sexual function. Some paras can get off without any help. Others just have to settle for what they can do.

Fellow Utahn here if ya ever want to grab a beer sometime hit me with a PM. I saw ya enjoy kokanee, that's my go to as well. Since I have to ask a question,

where were you when this happened?

Has it had any effect on friendships?

how did your parents fare in the whole ordeal.

Great ama btw. Have a good one

I was in Hawaii on vacation with my family. I'm not sure how much it's had an effect on friendships but it definitely put a strain on my parents.

I'll shoot you a PM about that beer :)

I'm sorry this happened to you. Do you go to any type of support group? I was just listening to NPR the other day and they had a paraplegic and a quadriplegic on. And they just talked to each other. It was fascinating to hear them talk. It seemed like they both gained so much from just being able to talk to someone that could understand their situation.

I saw in another comment that you play video games. What are you playing right now?

I play quite a bit of CSGO, it's kind of my drug of choice. I also play rocket league, just finished the witcher 3, have GTAV but haven't been playing too much lately.

As far as support groups, I don't really attend any but really should, for me it's tough enough to just get out of bed to get to the computer that I don't normally have much energy left over to get myself together enough to go out unless I have to work. But talking to other people who have shared similar experiences definitely makes me feel better.

What sucks most about being in a wheelchair? Is the wheelchair access where you live/work/whatever sufficient?

Honestly the best part of being paralyzed for me is the wheelchair. I like to scoot around all over the place and wheelie off curbs and shit like that. I tend to freak people out when they see me do dumb shit like that though haha.

The worst part for me is the lack of sexual release. I can't feel my junk at all so it's extremely frustration sometimes when I get really horny.

Oh and the constant nerve pain is nothing to shake a stick at. Imagine your foot or hand falling asleep, but instead of just your foot or your hand it's your entire lower body. But there is medication you can take to help take the edge off of that.

See if ketamine treatment is available where you live. It can really help with that.

Hm I've been interested in ketamine, although I doubt Utah is very open to such alternative medicine. It's definitely on my list to try though. Thanks!

It's available there, I just checked. Depending where you live, you might have to go to SLC. It's not really considered alternative anymore, more and more places are doing it.

Hm I'll ask my Doc about that. Thanks for bringing it to mind!

What's your fave tv show?

I don't really like to pick favorites, and it's especially hard with TV shows because there are so many different kinds. My favorite comedy is either Always Sunny or Community.
I used to be really into Game of Thrones but the quality has dipped since about the 3rd/4th season IMO. Westworld has been pretty good so far, haven't caught the newest episode yet though.

What do you do for work? Did you have to change career paths with this injury?

I was trying to go to school for computer science before I got hurt, but my depression kind of got in the way of that. Then I got paralyzed, tried another semester at school and couldn't keep up.

As of right now I work the front desk at a community rec center, it's pretty easy going and the people who work there are super nice. I'm hoping to wiggle my way into some tech job though, honestly I would just love to work with computers and people because they just make sense to me.

Thanks for telling us about this condition, I think most of us had no idea about this. I guess if I have to ask a question: how's it hanging, dude?

Eh it's hanging. Been in kinda a lot of pain recently and I'm running out of my pain meds. So it'll take a few days for me to get some more :/

How were you advised to maintain the flexibility and musculature of your legs?

For flexibility I try to just stretch out my legs every day. I also have long leg braces that I can use to stand up, those help with bone density and flexibility.

As for muscles, they have atrophied quite a lot. I don't really have a way to keep the muscles, some people can use electricity to help with that but my legs never really responded much to it.

I've seen this wheel wheel chair that helps you stand.

Do you understand why the electrical stimulation doesn't work?

Eh it seems to just work for other people more. My muscles just didn't really respond when they pumped them full of electricity.

How has this affected your education or career?

It's made it harder to just get out and do the things that I need to do to further myself. It hasn't helped my already existing depression that's for sure.

How did you cope with this? I could imagine it was pretty hard and saddening. I know I would be devastated to find out I was paralyzed from the waist down or if I had to get a limb removed.

You just kind of have to move on. There's no point in dwelling on things that you can't change. It's not something that you can do in one day though, it's a constant every day struggle to keep your head up. But being in a rehab hospital that is well equipped to help you adjust to your new life is something that really helps, and it's also good to meet other people who are in similar situations.

It might sound kind of sad but meeting people who have it worse than you and are more positive is a challenge in and of itself, you are reminded that no matter what if you can keep a positive head about yourself then you can conquer anything.

[deleted]

I don't really know honestly, I don't know how I'd handle blindness. On one hand it would be nice to have more bodily function and be able to control my bowels and bladder, and have sexual function. But being blind I would have a much harder time with my daily entertainment. Playing video games and watching TV are pretty big for me.

Long term goals? Survive.

Did you enjoy the small amount of surfing you did get to do?

Lol not really. Was never much of a beach person before and sure as hell am not now.

Not sure if you know, also not sure if this was asked yet but do doctors know if this is more commonly found in people native to Hawaii or Japan? Or can this happen to anyone?

Thanks for telling us your story. I don't really know what to say. But I hope things go better for you from now on.

I don't think there have been enough studies done to research that. But it seems like it could happen to anyone (although the chances are extremely low, you're more likely to be bitten by a shark haha)

When did this happen? Sorry for your misfortune :/

Little over a year ago

How old are you?

22, Deuce deuces.

1. How long ago did this happen?

2. Is there any hope of regaining some feeling or function?

3. How active were you before the incident/ how was your strength and flexibility?

1: A little over a year ago.

2: There's always hope but there really isn't a way to know for sure.

3: I was super active, I used to climb like 5-6 days a week. I also skied for 19 years before I got hurt.

Dude! First off, I'm sorry you've gone through this but I admire the way you've handled it. You're the man. Second, is that a wasd hat I see? Where did you get it? Stay positive my man!

Yeah it is! It's super well made. I got it at a video game convention here in Utah. I found their website just now actually if you're interested

The only good part about living, that I can find, is that it's limited. No matter how bad the cards are dealt for us, it all stops once we're in the dirt. So every now and then when all the walls around me start to cave, I remind myself of this. I remind myself to just live.

Ah, I almost forgot to ask a question. Hmm..

What was something funny that happened that made you laugh really hard?

Hm I'm not sure I have a great answer for that haha. I mean I've laughed pretty hard at some TV but mostly it's just joking around with my friends online that gets me laughing nowadays.

Do you use medical marijuana? Do you watch that new sitcom SuperStore?

I used to but had to quit for unrelated reasons. I think it helped a little but I would also get sick the next day from it.

Haven't seen superstore.

[deleted]

You want some pics of my catheters? ( ͡° ͜ʖ ͡°)

[deleted]

I get it. I don't have any news article and do not have access to my medical records at the moment.

You'll have to take my word that it was Surfer's Myelopathy that paralyzed me and not some car crash or botched surgery. I'm here to talk to people about not only SM but paralysis in general.

Regardless of how it happened, I am bound to this chair every day, and haunted by incessant pain.

We can totally ditch the reason it happened and still have a conversation about what it is like to like with paralysis, something that the average person has no idea what it's like.