I'm a 19 year old male with an 85 degree curvature in the spine, condition called Scoliosis AmA!

tkfx,

I am a spine surgeon specializing in scoliosis. I created an account just to tell you that you are definitely not out of the range of correctable. Technology has advanced dramatically in the past 10 years or so and it is possible to correct curves even much more severe than yours. Make sure you see a doctor who is a member of the Scoliosis Research Society (www.srs.org). There are many spine surgeons out there, but 96% don't do much scoliosis and may tell you a curve can not be improved when it in fact, can. While it is true that scoliosis of even 85 degrees is not immediately dangerous, curves greater than the 70-80 range lead to long term congestive heart failure and a condition called cor pulmonale. This ultimately will shorten your life expectancy significantly and for that reason, we like to intervene while you are still young and can handle the larger surgery. All the best

I must have missed this in the staggering amount of comments. This was my surgeon when I was in childrens hospital. http://www.chla.org/site/apps/kb/cs/contactdisplay.asp?c=ipINKTOAJsG&b=3832751&sid=5nJDJTMpFbIILNPvGqE&r=1

I will look into it when I get home, as it is very true that technology advances very very fast. I hope I was not too late to respond.

Good luck, man! If it does get corrected one day that'd be fantastic! :)

It would!

I really really want this to work for you. As a personal trainer I've had clients with much milder degrees of scoliosis and understand how significant it's impact can be.

I really wanted it to work for me couple years back but I sort of lost hope and accepted the way I am, but after this AMA it seems like there still is a chance something can be done as long as risks arent severe.

I work for a Johnson&Johnson company that can 3D print a bone model of your spine. This helps surgeons in pre operative planning for many scoliosis surgeries. If your interested in having this done PM me.

Edit: For anyone who PM'd me, I will get back to you by tonight with the proper contact information.
Edit 2: Thanks for the Gold! Super shiny!

I don't think i'll be having a surgery anytime in the near future, but thanks for the offer!

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Stated in a previous comment, my body is so twisted and bent that any surgery to straighten my back would throw my whole bodies system into a mess. I don't feel much pain now, but after the surgery I might have more pain because of the fact that my body wont be used to the new way. All my organs are adapted to fit my body. For example, one of my lungs is smaller then the other because of the room in my chest.

That's actually pretty cool how our bodies do that, if you don't mind me saying.

I know its pretty amazing!

I wish i could be ok with myself 1/5th as much as you are.

You can be! Just look at the good things in your life and ignore the haters!

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You can't really have rods placed in your spine while you are growing, because the rods don't grow. My doctor said that we should wait until my growth has stopped before we make any decisions

I know you have a different story than the usual scoliosis case but whatever doctor told you that you couldn't get surgery while you were still growing was a jerk. They so spinal fusions for pediatrics all the time and they use special rods that expand with growth of the person. I have scoliosis and had a 75 degree curve up top and a 55 degree one at the lower curve. You definitely need some second opinions! Either way, good luck to you and kudos for the AMA!

There was surgery but with a high chance of paralysis so we didnt do it.

Like gem58 said Why not?? I had scoliossis (32 degree). Used a corsett for 4+ years. An old classmate of mine, did the surgery. Which he is happy about. I think he had ~60 degrees..

Everyone's body is different, something that works for someone might not work for someone else. Id gladly have surgery to straighten my spine, but if it involves risks greater then how I am now then i'll just live my life like this. I just want to live a happy life.

I had a double curvature of 72 degrees in the lumbar region & 48 degrees in the thoracic region and I had spinal fusion at 14 yrs of age. It helped tremendously and even though my organs had already adjusted to accommodate the curving it worked itself out post-surgery. My point is that don't give up on correcting the issue. It's very much worth looking at ALL the options. It's been 25 years since my surgery and I'm glad every single day that I did it. Good luck!!

Point taken, and i'm glad you are better now! Good luck to you as well!

Hello I have 110 degree curve with my scoliosis so thanks for doing the AMA! My condition is also unfixable and plus I have a crushed lung due to my spine so it's nice to hear from a person who has dealt with it :). Anyways I just wanted to know what your ambitions are when you grow up?

Wow 110! I hope you are doing well, it is a hard life to live with scoliosis! My ambitions is to get better at my 3D art, that is basically all I do when Im not with friends or playing games. I want to become a 3D environmental artist. Good luck to you bro!

Would you be willing to post any of your designs? My sister went to school for 3D animation and I'm a designer, so I would love to see/critique your work! (:

These two scenes are my latest done in a month. http://imgur.com/a/XvKnO

I've seen your stuff on polycount.com great work.

Now you know who I am!

I recognize that challenge from Polycount! I'm actually working as a 3D prop/environment artist and I can tell you you're doing a great job--definitely on the right track. If you ever want some portfolio advice or advice about getting into the industry send me a pm! Good luck and keep at it.

I somehow had a thought it my head that someone form polycount would notice my work and remember who I am :D

Your 3D work is pretty impressive. A damn sight better than what I can do!

Thank you! All self taught!

What has been the toughest thing about living with scoliosis?

The toughest thing for me was accepting the fact that I will never be "normal." Many times in the past I've cried myself to sleep wondering, why me, why did I have to be born this way. Sometimes I forget that I have scoliosis when I go out, but when everyone is taking glances at I and staring at I, it quickly reminds me the sad reality.

Damn man, im sorry. But dont let that stop you from appreciating life!!

Live life have fun!

My life for Aiur!

Aiur!!! wait... whats Aiur?

Aiur is the homeworld of the Protoss. A race from Starcraft. You should check it out. You might never be a quarterback in the NFL, but you could be a pro Starcraft player.

Ive played quite a lot of starcraft 2, now I moved onto Dota 2!

It's times like these that I feel sad that the phrase "you only live once" has been so crushingly sullied.

YOLO!

As someone who occasionally makes glances and possibly gives the impression of staring sometimes when things are out of the ordinary, I just wanted to say...well, I'm not really sure what to be honest. I don't do this with the intention of making someone uncomfortable, I was raised by a RN and I have a very clinical way of looking at things. It's genuine curiosity, no hostility or weirdness or judgement involved. Still, I can see how it would bother people. I almost want to make a general apology for being the type of person who has possibly caused you grief, but at the same time I feel like that would be apologizing for basic human curiosity, and somehow that seems wrong.

At any rate, great AMA. Your attitude is both pleasant and infectious.

Yes, throughout the years I have learned to accept that fact that humans are curious and you cant stop people from staring. People will stare, all you can do is find a way to make it fun for yourself... like stare back and make them feel awkward :)

No one is "normal." We're all weird in our own ways. Some are more obvious than others. I'd rather be "weird" than "boring", which you don't seem to be!

True, no one is normal, and thank you!

I have both rheumatoid arthritis and a brain disease at only 19 and I know exactly what you mean. For the longest time I never asked why me and then last summer I started asking it and became severely depressed. I've learned to keep my head up and that even though I have these, my intellect will keep my afloat. Best of luck sir.

Just focus on the happy things in life. Do things that you won't regret in the future, live life to the fullest! Good luck to you bro, I know its hard, stay strong!

Please watch this

Great video, you need to look beyond the haters and live your life.

That's what I think about some things in my life. Sometimes, things are really unfair. And totally beyond our control. If only it would be easy not to compare myself with other, more successful, more beautiful people. Alas, this is a difficult thing you're going through, my friend! But you're doing it well! Good job!

Thank you!

Don't wish to be rude and sound like a dick but...

In the event that your condition becomes too unbearable to live would you consider euthanasia?

Never.

Glad to hear that you love your life, and you have the control and strength. Op is badass.

You are badass as well!

Did the doctor tell you why it's too late to get it fixed?

When I was 7 I had surgery to fuse my lower back so that my spine would not get worse as I grew. Well it turned out that it didn't help very much. At this point my ribs and organs have adapted to the curvature of the spine. Surgery would cause a lot more problems as it would throw my bodies natural adaptations out of whack. Also my rib cage is tiled so any major surgery would have a High risk of nerve damage.

That sucks. Do you know if it will continue to get worse, or is it about as bad as it can get now? Also, do you know how it will affect your health as you grow older?

From what I know is that when my puberty stops, I should stop growing, thus stopping my spine from getting worse. I think the only major thing that will affect my health as I grow older is my lung capacity. When you have such large curvature your lungs have a smaller area to grow. As of now, my lungs are at 45% capacity compared to someone my age and size.

Also, pro tip: don't ever let yourself get overweight. Makes any back problem worse, but scoliosis times a million!

I have this thing where I can eat anything I want and I won't gain one pound. Its weird.

How does your scoliosis effect your self esteem? Do you feel self conscious when you're walking down the street?

Im VERY self conscious when going about my business in public. When people are constantly looking at you, its hard not to think what others are thinking. Scoliosis affects my self esteem greatly. When I have little pain, I sometimes forget I have scoliosis, and usually that is when my self esteem is high, but then something will make me remember and i'll feel low.

I'm so sorry, that you feel this way :( I'm sure you have heard that a thousand times but I guess people are just surprised or curious or even impressed in which ways you are participating in everyday life (school for example).

I have to admit that I often don't know how to act around people with disabilities. I find myself looking straight at them, then I'm ashamed because I think they think I'm staring at them in an insulting way, then I pull of a shy smile and think they think I'm now making fun of them. Then I think about this the whole day, hoping that I didn't fuck up a persons day who is having it bad enough.

So, how do you wish people would act around you? Is it this moment where you realise, that they are not looking at random people like it just happens all the time but explicitly are aware of you? (Sorry, I don't really know how to word this and hope I am not sounding offensive)

Not offending at all. I hate to say it but I can find my self looking at others with disabilites out of curiosity. I understand that people are naturally curious, its hard for people not to look.

If you notice someone and are curious, then don't look at them for long. I notice people looking at me from the corner of my eye, but what bugs me is when they don't stop looking. Don't look long enough for me to turn around and look back at you. I find myself having a stare deathmatch with little kids as they are the ones to stare even when you are staring back.

Also what bugs me, is when people talk to me like I'm someone special. All I ask of people is to not treat someone special just because they have a disorder. Talk to them like a normal person

TLDR: Don't stare long enough for a stare back from me, and treat people with disabilites like nothing is wrong.

I cannot fathom what it's like to have to deal with those looks every day. But while it will affect your mood and your self esteem, you just have to remember that your self esteem needs to be based on your character.

People are assholes. Judgmental, arrogant assholes. That's the fact of the matter. Your back fuckin' sucks. But you seem to me like a good person. Have confidence in what you can and do control, not in the (rather shitty) cards you've been dealt with regards to physical appearance. Your confidence should come from the fact that you are a good person. I don't know you. Maybe you're hilarious. Maybe you have some unique skill. Maybe you have a passion for something unique. I don't know. But there's definitely something. And your character. That's where the self esteem really lies.

Almost everyone, regardless of the curvature of their spine, struggles with this issue of self esteem. It's better than overconfidence, trust me. Just focus on what is in your power, all of those positives, and know that what other people think about how you look really doesn't matter. If those people are going to judge you for something like that that you obviously cannot control, they are not worth the marginal amount of energy it takes to think about them, let alone such a strong influence on your emotional well-being.

I love you.

Love you too. Now go out and get some poon.

I shall not go for poon, poon shall come for me.

dude you are fucking awesome.

No, you're awesome!

Does it hurt that your spine is curved?

Miraculously I have very little pain. My doctor has told me that I am VERY lucky, because with a curve this large most people have tremendous amounts of pain.

That's remarkable! I have (much less severe) scoliosis, and I'm in varying degrees of constant pain.

Your body is so clever.

Everyone's body is different, good luck to you!

That's awesome! Best of luck to you!

Thank you sir! Its the only way I can consider myself "lucky"!

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Thank you and good luck to you too, take care!

At first glance it looked like you had hella swag

SWAG

Hi, If I would get a second opinion from an Orthopaedic Surgeon. I work for a practice that has a spinal surgeon and I've seen the results of his fusions to correct scoliosis. Given your age, health and such would be factors in whether or not to operate, but it never hurts just to get another specialist to have a look.

My current doctor was one of the top guys from Childrens Hospital, and I have a appointment with my current hospital to see their specialist. I still remain very skeptical.

Best of luck!

Thank you!

what's your favourite slingshot ammunition?

is masturbation uncomfortable for you?

Watermelon

Want to help my find out?

Ummm wut.... dude... umm... why would you waste watermelon like that?

I hate watermelon. Every bite I get a mouthful of seeds I have to spit out.

I chew the seeds. (I figured it's safe, since no watermelons have yet grown in my stomach.)

I hate seeds.

You know seedless watermelons are a thing, right?

I do. But.... I don't like watermelons?

I had a 90 degrees scoliosis. This is a picture after my Spinal Fusion...I'd be dead without it. Now my scoliosis is only, roughly, 45 degrees.

Wow, impressive, glad you were able to make yours better! Stay strong and good luck to you!

I was feeling shitty yesterday and now I feel like an asshole for every time I felt shitty.

You asshole you!

I will try not to feel shitty anymore! Ever!

Amen!

Do you have a girlfriend?

Never had a girlfriend. My generations is based off of first impressions, and generally I don't have the best first impression. I think to myself "would this girl like to see me with her in public." At this point I don't really care for a girlfriend or not, I just live my life and try to have fun.

When you're 19, it's harder. People haven't had enough life experience to know what they truly value in a partner. I promise you, be a man of good character and a good woman will see value in it.

I very briefly dated a guy with cerebral palsy that affected his gait pretty significantly; it was obvious to anyone who saw him that something was not normal. But he was a hell of a guy, and I'm still sad that he moved away for work because I promise you his character outweighed any worry I might have had about being seen with him in public. From talking to him as friends after the move, let me just say... he doesn't have any problems in the dating department. Being a damn good man will make up for just about any physical shortcoming.

Thats what i've learned. When you are young people don't look at your character as much as look. That is why I don't worry myself about finding a girlfriend as much as my peers do. My principle is, live life happy, whatever happens, happens for a reason.

You'd be surprised what a girl will overlook. Just talk and let them get to know you. Let your personality come through.

After much peer pressure from my awesome friends, I've learned that you need to have balls. Before I would be too shy to say anything because of the constant thought of scoliosis on my mind. Now I just be me, try to make people laugh as much as I can.

Screw that. We all have our problems. If your biggest handicap is that you don't look n"normal" but you have a great personality and treat people well? I'd consider you a catch.

If you have the confidence and believe you are worthy of a partner, you may be surprised.

Good luck, man.

Thank you, means a lot!

Does just standing hurt or get uncomfortable after a while due to the angular effect of gravity?

Standing for more then 10-20 minutes at a time will make me feel very uncomfortable. My hips are not even so, if I were to stand straight, the sole of my right foot would not touch the ground. So in order to balance myself out a little, my right foot is on its tiptoes, while my left foot is firm on the ground. This causes all my weight to transfer to my left leg causing fatigue after a while.

have you considered custom shoes with one sole built a little higher than other? might balance the weight better. a girl I knew in dance class about 124615+ years ago had shoes like that.

not a bad idea, never thought of that!

What's the most dangerous thing you are physically capable of doing?

I drive a lifted Jeep Wrangler, don't get in my way!

I have an uncle who was also born with scoliosis, his was so bad that the doctors told my grandma that he wouldn't live longer than 8 years. She had them put my uncle into a full body cast (this was more than 40 years ago) and he did more then survive. He wore the cast for more than 15 years. He is short but alive and the only time you can really tell there is a problem is when he stretches or bends. Were your parents ever told that you wouldn't make it? Is it genetic? When both my kids were born their spines were the first thing my grandma looked at.

My doctors have said that with the way things are now I will be fine, I've had heart, and lung tests I have nothing that is physically life threatening.

How's your pimp walk?

I don't need a pimp walk, the second I enter a room everyone knows who I am and I'm there to fuck shit up!

I can hear the panties dropping now.

Panty Dropper Reciepe:

Get a blender, fill 1/3 with vodka of choice. Fill 1/2 with minute maid lemon aid. Squeeze a bunch of lemons into the blender. Add Ice. Serve to ladies.

Do you have special assistance throughout your daily routine?

Since I have very little pain, I have not needed special assistance. I can basically do anything that any "normal" person can do.

Does this include physical activities as well? Like, do you have any trouble playing different sports, biking, or even running? Or would there be no problem if you just decided you wanted to learn to surf?

NINJAEDIT: just read a reply further down how you played basketball/soccer but had to quit due to the lung capacity.

Because of my lungs being smaller and having 45% lung capacity, I get tired really quick when it comes to physical activites. I can run, bike, and play sports, but I will get out of breath really quickly. Going up 4 flights of stairs has me panting like a dog after running for an hour in 100 degree weather.

What's an activity/place that makes you feel most "normal"?

Being on the internet/computer. No one can judge you from your looks over the internet or when you are chatting with people in games.

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Call of Duty ended when MW2 came out. COD4 (MW1) was the best. Everything after became the same bullshit.

I also have scoiliosis, though nowhere near as severe. Its only just noticeable If im wearing a shirt, my right shoulder sits about 2cm lower and the left side of my hip about 2cm higher.

My belly button is inline with my left eye as a result.

Don't think too much about it and enjoy life! Good luck to you!

When I was your age, I had a girlfriend who had severe scoliosis; two curves around 40 and 60 degrees. She had to get the surgery because they said if she didn't, the curves would get to the point in her life where they would literally kill her.

Is this an issue with having two curves? I was under the impression all scoliosis sufferers would need surgery.

I had one surgery to fuse my spine at 7, that probably helped my spine from getting worse.

I had a friend with a bad case of scoliosis like you. I'm not sure of the exact degree, but he's the same way. Very risky to have surgery done. If it's too risky to have it done, don't worry because you can still live a happy life. Good luck

Thank you!

My brother had 100degree curvature of the spine which meant his ribs were touching his hip bones, and it couldn't get any further. He had the spinal rods done, as it would help his lung function (he also has Duchenne Muscular Dystrophy) so this was a big thing for us. 8 Days in hospital and he grew 6 inches in height, and had to have a new wheelchair built.

Its different for everyone but as long as you don't let it get to you :)

Holy.... 6 Inches..... WOW! I can't imagine how it would feel to be 6 inches taller! Give your brother a pat on the back, hes been through a lot!

Have you tried strech/strength thearapy, pilates that kind of thing? I also have scoliosis (mines minor) and have noticed a massive difference since starting. However as I said mine is not so bad, good luck

When I was a baby I used to wear a full body brace, after I hit middle school I wore a strap brace, while doing stretching exercises. After awhile it felt like a lost cause so I stopped. I just accepted that there isn't much that can be done. My parents basically tried everything.

Did your spine grow at an average rate? Could you measure your spine and see how tall you would be if not for the scoliosis?

They say the span of your arms spread out is usually how tall you are, maybe a little shorter. If we take that into account, I should be 5'6" - 5'4". I am 4-10.

No real question here. Just wanted to commend you on your bravery. My little sister had pretty severe scoliosis including a hard brace for about two years until she eventually got metal rods in her back which have, to the eye, corrected the 50 degree curve. I have seen how people, especially teenagers, can make this disease so difficult as they always stare or comment. Anyways your really positive attitude will certainly help you in life, and it seems to me that you are a really strong individual.

Thank you! Good luck to your little sister! Im sure scoliosis is more tough on women then men!

I have Structual scoliosis under 45 degrees. I feel for you man. Are you gunna get it straightened through op? And what physio do you have to do?

I am going to leave it as it is. I've exhausted all possible ways to fix it, almost every single one involves more risk then I have now. I don't really have any physio to do.

when you were a baby how prominent was the curvature? when did it really start to get bad?

When I was a baby it was noticeable, it started to get worse when I hit 12-18. As soon as I started to grow was when it got worse. Around 6th grade I was the same height as everyone else, by senior year I only grew couple inches and was almost the shortest person in school.

Hello! I am starting grad school in the fall to get my masters in prosthetics and orthotics, and I am very excited to work with patients who have scoliosis. I don't yet know much about the process of correcting scoliosis with a brace, and I just wanted to ask you if you have had one and what your experience was with it if you did? Also, you're awesome for doing this AMA. Keep on being a champ!

Ive had two types of braces. One was a hard cast. Basically all they had me do was twist my body so my spine was straighter, then they would start making the cast off the straightened form. Im not sure how much that helped. This brace I hated the most because it made me feel so uncomfortable. It was hard to breath and it just felt like your body was trapped in a box.

Second brace was a strap brace. The strap brace basically had different strength straps wrapping around my hips, ribs, and shoulders to try and straighten my form as I went about daily activites. Again im not sure if that helped. This brace was more bearable then the last.

I had scoliosis. It was diagnosed when I was fifteen and I had surgery that same winter. I had a 48 degree curvature and I got it fixed and I've never been happier. I do get random spurts of pain and there is a part of my back on the surface of the skin where it is numb and I don't feel anything. And sometimes it's hard to sleep in certain positions. If you ever have the chance to undergo surgery, you won't regret it.

I as well have numbness is small parts of my body, and unable to sleep in certain positions because pain will start to erupt from those spots, but Id rather live my life like how I am now, rather then take the risk of surgery. Im happy for you that you got it fixed! Many people are not so lucky! Good luck to you!

Do you smoke a lot of weed?

Smoked probably 5-6 times.

I got only one question.Are you happy?

I am happy.

You sound like a funny, genuinely great guy! I agree with what the other commenters are saying, as you get older, people get less superficial. Same with college. Are you in college now or planning to go?

I am in community college atm

"has become so large that my doctor has told me its unfixable" So were there any point in your life you could have done surgery with success? If so, that really sucks. Not that it doesn't suck if that's not the case.

Im not sure. My doctor was considering a surgery for awhile, but he needed more information to make sure it was the right thing. After having a CAT scan of my back, and x-rays of various sorts, my doctor forwarded the info to a neurologist doctor, after they came to a conclusion that the risks would be greater and there was a high chance of paralysis, and I might feel a lot more pain after. So we went ahead and said screw that. My doctor said that they can do a surgery to remove the hump on the side of my neck if I wanted. That hump is my rib.

At what point in your life did it appear? I remember being given spine curvature tests in grade school, at what point were you diagnosed?

My dad has a pretty bad hump in his back that appeared when he was about 10.

I was born with it so they found out when I was still developing.

Shit man. I have kyphosis and scoliosis but only a very small curvature. Just enough to make sitting in normal chairs uncomfortable and give me constant back pain. I'm going to start going to the gym to hopefully fix the muscle imbalance it has caused...after seeing this thread I think I'm thankful that it's not so bad :\

Everyone should be thankful for how they are, you can always have it worse, just be happy for how you are! Good luck to you!