IAmA 14 year old boy with scoliosis. I've had 31 surgeries in my life. I currently i have 4 titanium rods in my back correcting the bad kyphosis that i have. AMA!

Do magnets stick to your back?

ha ha I love this one no they don't actually (I've tried it already) but when I go to the airport the metal detectors go off and we have to carry a not from my surgeon explaining my condition

Haha, I was going to ask about that. I have a friend with titanium rods in her back for the same reason, and when we were 17 we were going through an airport and the metal detectors went off like crazy. Tiny little 5'2" blonde girl going "I have a note! I have a note! I have rods in my back!" as security was all suspicious. Have you ever had problems with security, despite the note?

No problems with the security what so ever. One time I went to the airport and this security lady was like "Hey I saw you on the news" there was a news article about me and my condition. She recognized me and let me through without scanning me at all. I felt awesome that day :)

I'm 15 with scoliosis, but it isn't nearly as bad as your case. All I have is one side of my rib cage sticking out farther, making it look like I have one boob. My friends have dubbed it the "uni-boob". Ladies love it though

anyways, I just wanted to say that you are very strong and brave. Thanks for sharing your story with us

Thank you for the comment I'm glad your case isn't as bad as mine because I don't want anyone to feel this pain.

Well, since no one's asked yet and I'm a nosy broad, pics? X-rays, scars, anything that "proves" the story? Not that I'm doubting you, understand. It's just the nature of the thing.

http://i.imgur.com/cgVHW.jpg

Ouch, that looks terrible. I wish I could say I understood the pain you were in, but I can't. So for whatever it's worth; I take my hat off to you, and I hope that things will turn out great for you!

Thank you very much!

Hey man. Former 55 degree curve here. I've got two rods, several screws and fused vertebrae. Getting and recovering from that surgery was the absolute hardest thing I've ever had to do. I know the unending, soul-crushing pain, the meds that make you feel like your losing your mind, the nightmares. It was the only time in my life that I ever felt totally defeated.

To know that you've gone through that so many times, and to such an intense degree, is incredible to me. I can't imagine how you've kept your head up (er, you know what I mean). I hope you realize that you are seriously something special, and that you're stronger than other people will ever realize.

There should be more people in this world as kind as you thank you for the comment

I'm assuming this is pre surgery?
Please god let this pre surgery...

i just took this picture today and this is after 31 surgeries

Holy shit man...
I'm guessing you'll have a lot more surgeries too 'look forward to'?
Or is this the end result of what they can do for you?

well i have two more surgeries that are scheduled for this summer.

Keep on keepin' on, buddy.

Thank you very much!

Sorry to hear about that :/ how does it affect your day to day life?

The morning I wake up with pain throughout the day I still have pain and at night i sleep with pain doesnt get much better than that.

:( that is terrible, is there any sort of warm pad treatment or pain killer you take to sleep?

I usually take tylenol 500mg but that's only if its really bad like I said before I'm used to the pain by now

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Yes it is prescribed and my parents make sure I don't take more than I need

Do you have any plans for a crime fighting alter-ego?

You know I've thought about this for many years and I've decided that I'm the man of titanium which is stronger than the man of steel so take that superman!

How do you feel this has affected your life? Are there things you cannot do because of this condition? How have your classmates been towards you?

This has affected my life greatly growing up i always wanted to be a basketball player but now with my condition i get fatigued very often and I lose my balance often so there goes being a basketball player. My friends and classmates are amazing they treat me normally which Im very grateful for.

Do you ever try to be optimistic by telling yourself you are simply undergoing the preparation for human augmentation that will make you a superhuman cyborg?

If not, you should. By the time you're 25, we will have the technology.

You know every time I have a surgery I tell my self that I'm one more step to becoming a transformer. Haha

My younger sister has scoliosis, she recently had a surgery to correct it. She had a double curve, her upper curve being 57 degrees, and her lower one being around 70 degrees. She also had titanium rods a screws put in along with having 13 of her vertebrae fused.

I'm curious as to why your scoliosis is causing your rib cage to collapse on your lungs (if that is the case)? And also my sister did not find out about her scoliosis until she was around 8, because you were diagnosed at 3, was it very pronounced?

Thanks for the AMA!

Yes the doctors said that my case was one of the worst ones but I love my doctors and I trust them very much. As to why my ribs are collapsing on my lungs I don't really know but my doctors mention it a lot. Sorry I couldn't answer that one. Tell your sister that I said hello and to always remeber this quote because this is what keeps me going every day.

"Never pray for an easy life but pray for the endurance to last a difficult one" - Bruce Lee

Here is a little dance to cheer you up.

I call it, Scoliosis Creeper Dance

This really made me happy thank you!

Not to be rude, but is there any chance with girls for you?

You know I've wondered the same thing but I'm looking for someone who will accept me for who i am and not what i look like. Thats kind of hard in this day and age.

You're young now, and being a teenager might be the hardest time you go through. Just remember that there are lots and lots of grown women who would never discount someone just because their back is a little crooked. I'd be happy to go on a date with someone who looked like you, as long as I liked their personality!

There are so so so many things that make a person attractive. Don't count yourself out because you're different.

This is very encouraging thank you very much.

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I love BF3 , skyrim , Red dead redemption, fallout (all of them) , Portal ( both of them) Minecraft, TF2 , CSS, The total war series and many more

oh my god you're like a 1 year older version of me! I'm into every single one of those games! You're very inspirational and I respect you alot with having to put up with that, especially at 14.

Thank you very much

BF3, PC or console?

Xbox

Which surgery was the worst experience and why?

Man this ones easy well the worst one was last year I had to do this surgery called the HALO which is where they would get a horseshoe shaped piece of metal and drill it into my head and attach weights to a pully and what that would do is pull my head up to keep it straight and correct the kyphosis. The worst part about it was that i had to stay in the hospital for three whole months during the summer and I also used skype to keep up with school.

Do you ever feel pain from the implanted rods? Waking down the street, would someone be able to spot your condition? Are the surgeries financially draining or are they covered by insurance(s)? What does your future look like?

yes every day i feel pain on a scale of 1 to 10 my pain is usually at a 8. yes i get looks from people that don't know what i have. my heads tilted to the side a bit and im kind of hunched over. For a one day surgery they usually run about $30,000 and I think they are covered by insurance. I hope that in my future that I become taller and look normal.

You mentioned you play video games. I'm a psych researcher and I've done a lot of research on both pain (mostly temporary pain) and video games. Do you find the video games help relieve some pain?

Yes I do I find if I put my concentration on the games and not the pain I feel relief so yes i could say that video games are a form of medicine

Are the girls attracted to your titanium rod?

Sadly no.. no girls

My spine looked like a hand-sickle before my surgery; I know how ya feel, OP. You'll be fine!

Thank you I hope you do fine as well!

Thanks for doing this. There have been a few people who've done AMA's with this surgery but none who had it so young. My interest is this: My son is 6 and he had the surgery 2 years ago to correct slight scoliosis but some heavier kyphosis (although nowhere near what your picture indicates you have). He's already gone through 3 lengthenings and so far so good, except the kyphosis above the rods is still ongoing so they may need to raise them up. My questions are:

• Where are you having the surgeries done/who is your doc?

• How has all of this affected you socially? My son's is not as visible other than 2 bumps at the top of his back which kids are just now starting to notice. We're trying to prepare him for how to explain this to people, not be ashamed of it, have a sense of humor, etc. Any tips on that front?

Well I go to the Christus Santa Rosa hospital in san Antonio tx and my doctor is James W. Simmons he trains doctors from all around the world on how to do these surgeries he's the best in the world. As for the way for your son to tell others about his condition. Often in public little kids ask me "what's wrong with your neck" knowing that their little and are just curious and mean no harm at all I just say well this is how I was born. Plain and simple easy for them to understand. I hope your son finds a way to answer that question as well

What is the schedule over the next few years for a condition like yours? Meaning, will you ever get the rods out and be able to live a relatively normal life, and if so, how long will it be? Or is there a chance the scoliosis could revert back?

I currently have two stainless steel bars in my chest to fix a very severe case of pectus excavatum, so I have a general understanding of the pains you go through but to nowhere near your extent. Keep staying strong though, man, you seem like a great kid and I'm glad you aren't letting this affect you more than it has to.

Yes at the end of the school year I'm going back in the hospital for another HALO treatment which is another three months. After that's done I'm going to have a spinal fusion which will end all these surgeries for good and the rods will be removed!

will your back be pretty much straight afterwards?

I hope so :/

I'm pretty sure many others including me would love an update from you once these surgeries are done, could you mabye do another AMA down the line? Would be great to see you fixed up!

I would be glad to do another AMA after the surgeries are all done

I'm curious, who pays for all these surgeries? Your parents?

Yes my parents do for the most part but insurance covers some of it too.

Do you do any yoga or other physical therapy?

I go to physical therapy twice a week and for the most part it helps me build strength and endurance.

Just curious... with your conditions, how did you decide on the name jumpingman?

Well one day I was playing Simon says and they told us to jump and one of my friends said I'm jumping.. I'm jumping man.. Boom it clicked that is when I knew that should be my name!

Do they give you awesome painkillers? They tell me to just go to physical therapy but my scoliosis isnt as bad as yours.

They used to give me tylenol with codine and that helped a lot but then they cut me off because they were worried about my kidnies something about them getting hurt or something like that so now I take over the counter tylenol