IAmA 19 year old Australian guy living with a Brachial Plexus injury. AMA

Two questions if you don't mind it.

Did your injury occur during birth?

Also, obviously you're a SouthPaw(Racer), but if your right arm worked normally, do you think it would have been your dominant arm?

Yeah, it was a birth injury. I was a big baby, 12 pounds at birth. My parents wanted a caesarian, and they worked with a maternity doctor to plan such a thing. But then he went on leave, and a new doctor came in (henceforth referred to as "the prick") who decided against it and went for a natural birth. When my mum went into labour, he found that my shoulders were too wide for me to actually fit through (of course he probably knew this, but he was a really sloppy doctor and he has a history of rough treatment with babies). The Prick got out some forceps and tried pulling me out by my head. Nurses jumping on my mum to get me out and whatnot. Basically, the doctor pulled hard enough to tear the nerve, and I didn't breathe for something like 4 minutes. I'm lucky that I'm still here actually. Don't worry, my parents sued him and won. :)

On the second question, my mum has told me that after the birth, she would be holding stuff out to me and I'd lean forward with my right shoulder. So I suppose it was my dominant arm to start with and my body just adapted.

Did your parents go through with any compensation from the doctor?

Yeah, my parents sued him and placed the money in a trust fund that has financed certain equipment to make my life easier and provide for stuff I need when I'm becoming independent (a car, specialised driving equipment, an apartment, etc.). It's enough for me to be able to get those things, but definitely not enough for me to live off for the rest of my life. With housing prices the way they are over here, even the apartment might be a stretch...

Going to start looking for employment before I've finished University - hopefully I'll find work that accommodates my injury - not being able to find work because of it is one of my greatest fears...

As somebody who also suffered from Erbs Palsy in my left arm, it's interesting to finally meet somebody who has the same injury as me.

Your explanation of the injury sounds nearly identical to mine, and I wasn't breathing for nearly 4 minutes as well.

In my case, my forearm, wrist and finger mobility remains identical, but I have limited rotation within my shoulder (Unable to hold my arm out straight, or rotate my palm flat). I know I was very very lucky in my recovery in that my problems are minor/only aesthetically different.

Are you able to touchtype with both hands? What is your finger/wrist mobility like? I can see from the video you need to support your arm to lift it up

Did your parents do assisted exercise with you when you were a baby (Like wheelbarrows etc) to try build up strength? How far into your life did you continue physiotherapy treatment/if at all?

Did the doctors tell you what arm should have been your dominant at all? I know in my case, I should have been left handed if I wasn't affected by my Brachial plexus injury.

This is a silly one, but do you grow back hair/chest hair? I know in my case I have less hair on the left side of my body compared to my right :P

My right hand cannot type at all - it's useless with anything concerning grip or pressing buttons. I use my Left hand for everything concerning computers, and as a consequence of that I'm unable to touch type. I have to look at the keyboard when I'm typing, but I can type reasonably quickly considering... I'd estimate about 45-60 words per minute when I really get into it. Playing games on the PC is difficult at times, but I get around it by mapping the "walk forward" action to the down arrow instead of the W key, and rest my right thumb on that edge of the keyboard.

Finger and wrist mobility is very limited. I can move my thumb, pointer and middle fingers more-or-less, but my ring and pinky fingers either don't move or move of their own accord. I can't move any singular digit without moving at least one other involuntarily. If I lay the hand on a table palm-up and straighten my pointer out and move my thumb, my ring finger moves along with it. I can't get the bloody thing to sit still!

I can't rotate my wrist independently. I can move it outwards, but not inwards (i.e. a "come here" gesture). It's impossible to do. I can't bend my arm straight, either, but my biceps is strong enough that I can use my forearm like a hook to hang bags on! The shoulder is mostly functional, like I can roll it around and stuff, but I can't lift my arm or flap it like a wing - hence me holding it with my other hand in the video.

I did do physiotherapy at children's hospitals on a regular basis right up until I was about 10. It mostly consisted of stretching my arm and testing whether or not I could move certain muscles. I wore a brace for a while to try and keep my arm straight, but it was so f_ing annoying that I only wore it a few times. I still have it around the house somewhere.

I've answered the "dominant arm" question elsewhere, but basically when my mum held stuff out to me, I would initially lean forward to grab it with my right shoulder. So who knows? Maybe my right arm was my dominant one at birth.

And yeah, I'm a pretty hairy guy. Back hair and chest hair, though I can see that my right side has a little bit less hair on it.

Do you have reflexes?

Could you clarify what you mean by that, please?

If a doctor tests your reflexes in your arm, does it respond at all?

I'm not sure the reflexes in my arms have ever been tested at all. But if they were, they wouldn't have much luck getting a response from my affected arm. Movement is limited - I can't move my wrist very well and I can't raise the arm at all. Not for lack of trying, though. It's just not possible no matter how much effort I put into trying to make it move, let alone if the reflexes were tested.

Do you ever masturbate with it so it feels like its somebody else? Stranger ? Forgive my childishness.

Uh... no.

http://i.imgur.com/2HcAJRd.gif

What is the prognosis of natural nerve regrowth? What about electric field stimulation to regrow the nerves? They use methods to re-grow nerves of people whose nerves have been injured by prostate removal surgery?

I assume you have doctos who are willing to try experimental new methods. Your bad arm seemed inert? No motor ability? What about sensation?

Basically the trauma caused the nerve to be torn out of my spinal cord by the root. Natural nerve regrowth never factored into it, I believe. If it did, doctors never told me about it.

The nerve was reattached further down the spine in an operation when I was 6 months old. This restored some movement, but not enough for me to use it properly, so the arm has remained undeveloped.. Essentially I have most of the motor ability in the arm, but - how do I describe this - I need to employ different methods of actuating the muscles, especially in the shoulder area. It's strange. That's as a consequence of the nerve reattachment. Feeling-wise, I can feel everything up until about halfway down the back of my forearm, and from there to my pinky finger I can feel nothing.

I went to the clinic a couple of years ago so that doctors could give me a final assessment of whether anything could actually be done for me, and the answer was no. So basically I'm stuck like this. But I don't really mind... I get by. :)

Thanks for the explanation. I am sorry that there is no current therapy to help you. I hope that in time they may be able to do something. It looks like the new location mapped it to another place, so you have to learn how to move and control it with different through patterns.

Good luck

Thank you for the kind words. I suppose if something could be done I'd take it, but to be honest it doesn't really bother me. I've never known any different, and there are good services for me here in Western Australia, like the Independent Living Centre. Most everyday activities are doable, and I am mostly content with my condition. Like I said, I get by. :)

Thank you again.

Do you support stem cell research?

I'm not an expert. But if it helps people, fixes their problems and makes their lives better, I'm for it. I would lean towards not using embryos though. I'm aware of the difficulties of using adult stem cells, but I'm confident we will find a way to improve the situation.

As to how it relates to me? Well like I've said in other answers, my arm has gone for so long like this that it's crossed the point of no return, so to speak. Sure, stem cells might help with the reconnection of the nerves to their original spots, but the actual arm is like 2/3 the size of my good arm and the bones are underdeveloped and the muscles are weak. Nothing can "fix" it now, save for robotic prosthetics, which aren't advanced enough yet to help my situation (and I'm not entirely comfortable with the thought of having a robot arm. Creeps me out for some reason).

Did you know that embryonic stem cells use embryos from the IVF process that would otherwise be destroyed? Does that make you look at stem cell research or IVF differently?

Perhaps. But at the same time, you're dealing with a collection of cells that would have become a human being had circumstances been different, and that's a whole different can of worms opened up...

Embryos aren't just potential humans, they are full, whole human beings each with individual unique DNA. Just wanted to clarify that the embryonic stage isn't just a collection of cells.

I stand corrected then. I'd still want to avoid destroying embryos whenever possible.

How were things growing up and going through the school system? I know how horrible children can be to someone with even the slightest evident problem.

It was actually surprisingly good. I was fortunate to never be made fun of for my arm, the only reaction to it was intrigue and people asking why it was like that. I suppose now that I'm older and wiser I could take issue with how direct kids were (especially in the younger years - coming right up to me and saying "what happened to your arm?" and nothing else? Present day me would have said "what happened to your fuckin' manners?"). But really all I was made fun of for in school was my weight (in primary school) and my above-average intelligence (in early high school). A lot of my friends actually tell me that they didn't notice it at first, so I suppose I can take that away from it.

I'm lucky and grateful to have a group of fantastic friends and to be respected by the people I meet in real life.

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Never considered it in a serious sense. I'm not against it or anything, but it just doesn't feel right. This injury has become a part of who I am in a sense... I couldn't do it unless there was a bloody good reason I had to. Not to mention it would be incredibly expensive.

It would also be very complicated to do such a thing. It's not just the arm that's affected, it goes into the shoulder as well. the prosthesis would have to be a complete shoulder/arm construction, and aside from the possibilty that my body might not be suited to it, prosthetics aren't at that stage yet.

As for the second question, I've answered that elsewhere, but I'll repeat it again: My arm is basically too far gone for anything like that to have an effect. The way in which the nerve has been reattached means that my actual method of moving the arm is very different to my left arm - some muscles can't be moved full stop, there's just too weak a nervous signal or none at all.

And either way, even if a prosthesis or muscle stimulation was possible, what benefit would I gain? I'd be more comfortable climbing ladders, I could tie knots more easily and I could carry big and heavy objects. But all of that is really inconsequential at the end of the day (a lot of that stuff I don't actually do or don't have a need for it, or I've adapted to it) and I get by well enough with everything else. I don't think it would be worth it, really.

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Fantastic. She has always provided for me and supported me in everything I've done, and has done so much to help me with my injury. Not sure where I'd be without her.

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http://i.imgur.com/A9xa6qc.gif

Bro, does this hurt? punches you really hard in upper arm

That would. Hit me on the back of the forearm or the back edge of my hand and I wouldn't feel a thing. I'd probably be slightly annoyed at you though.

Im really trying to understand what the hell this injury does..

The Brachial Plexus is the nerve system that controls the motor functions of the arm and shoulder. What happened to me was that some of the nerves in this system that connect it to the spinal cord were severed. So for the first 6 months or so of my life I couldn't move the arm at all, until I had an operation that reconnected the nerves further down. My movement is somewhat returned, but still very limited.

oooh ok! thanks for the info! TIL.. My father too has suffered nerve damage from his motorcycle accident. His was caused by a mental patient in the same room as him trying to help him "escape" from the hospital but ended up getting his leg caught in the bed side and falling cutting off blood flow in his only leg. He was on morphine so needless to say he never felt a thing nor can he feel parts of his leg now.

Ouch. Give him my regards, that doesn't sound fun.

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I share your feelings. I'm personally okay with what happened to me, but it still worries me and angers me that there are doctors like that who are out there and still practicing. Childbirth and a safe delivery is not something to be treated lightly, and people like you and me are proof of that. The money my family got as compensation has helped me through life quite a bit, but it doesn't change what happened and who caused it.

But at the end of the day, we're here, we're alive, and we should keep on living to the fullest. And make sure that people know what goes on to cause injuries like ours. It alters your life permanently. All because of one doctor who didn't care.

EDIT: And oh, how rude of me. Happy Birthday!

which nerves specifically were damaged?

Sorry man, I din't think I answered your question properly. For you and the curious, here's a scan of the details for my operation, detailing what nerves were affected etc. copied from the hospital file.

http://imgur.com/LI5fbGa

The very root of the Brachial Plexus.

Imagine a plant with a complex network of small branches. That plant is then pulled out of the ground, and the roots of the plant come out with it.

That's what happened to me. The actual nerves in my arm are fine, but the very root nerve that serves to connect the arm's nervous system to the spinal cord was the one that was torn.

EDIT: My Mum has clarified, if you want the medical terms: C5 to T2. Basically, everything.

so, do you attach your arm to your belt or something when walking around ? so it doesn't swing around (does it swing around ?)

It swings around sometimes, but only when turning around quickly. My upper arm has enough mobility that I can hold the whole arm to my chest when running and stuff like that. the arm has a permanent slight bend to it so I sometimes knock it on a doorway (eliciting a "dammit" and slight pain) but I've never tied it down. That would just get annoying after a while. I guess I cope. :P

when you say "living with" it sounds like the brachial plexus injury is somehow detached from you and merely sharing your space. when you die, does the brachial plexus injury die too, or does it find a new home?

http://i.imgur.com/5ig07sS.gif

Can you play video games? Do you? What's your favourite video game if so?

I've answered this one: http://www.reddit.com/r/IAmA/comments/1btrkf/iama_19_year_old_australian_guy_living_with_a/c9a4tl5

If you were in a fight would you fling it around and beat people with it?

In all truth, I'd probably damage the arm before I hurt anyone with it.

Damn, So if scientists offered you a terminator arm would you take it?

Fuck yes.

How big is the biggest size spider you've seen with your own eyes?

It blotted out the sun.

Do you think Freo should bring back "Freo Heave Ho"?

I'm not a follower of AFL, motorsports is more my thing.

Are there any video games that you play? If so, do you have a favorite?

My main hobby is sim racing: http://en.wikipedia.org/wiki/Sim_racing

I use a Logitech G25 racing wheel to compete in online championships, and I do pretty well all things considered. I've taken 2 drivers' titles organised by racing communities, and I've won many races in various disciplines from Touring cars to endurance racing. I've posted videos of how I drive to my YouTube account, and this one seems to be the one that has gained the most attention.

Other than that, I enjoy playing certain FPS games (Half-Life 2 + episodes 1 and 2 is my all-time favourite) and I spend a lot of time playing Grand Theft Auto (San Andreas FTW), Minecraft, RollerCoaster Tycoon and certain RTS games like Rise of Nations. I'm looking forward to the standalone release of DayZ as I absolutely love survival and open-world games!

I messed up my Brachial Plexus playing football (American). The constant beating on my shoulders caused it to flair and give me chronic stingers. Luckily, it wasn't severe enough that I had to stop playing. Now when I play I wear 3 inch extra padding (spider pads), a cowbow collar, and I lift often to strengthen my arms and traps.

Anyway, do you ever experience stingers/burners?

I sometimes experience painful stings within the tip of my middle finger and around the back of my palm. They are extremely painful (wince-inducing) and can stop me from doing things for about 5 seconds or so. Painful, but bearable.

I wish I could do what you do (lifting etc.) but my arm is too far gone to lift weights of any kind, and hence it won't make any difference to me.

Why is being Australian relevant?

Just in case anyone might think to ask what disability support might be like over here, or other things like that.