My short bio: I had scoliosis, diagnosed as a child, wore a back brace during high school and finally had total spinal fusion surgery when I was 17. This was 9 years ago and I'm still part titanium! I was inspired by the response to this post on imgur: http://imgur.com/gallery/pcPanMq and figured I would see if anyone had any questions about the surgery, lead-up, recovery, or anything else!

Proof below is a close up shot of my scar I just took (it's hard to photograph your back by yourself!)

My Proof: https://twitter.com/MiMawby/status/659763066314366976

Comments: 255 • Responses: 63  • Date: 

JimseytheMurph49 karma

What's your mobility like? One would assume "total spinal fusion" impairs your ability to bend your torso.

KiloMetrics104 karma

It certainly does! I like to describe it as having "permanent perfect posture." If you sit up in your chair and straighten your back as best you can, that's about what I'm like all of the time.

If I bend over (at the waist) my back stays perfectly straight. That's what the two titanium rods in there do! The funny thing is, you always imagine that you bend your back often but in reality you usually do it at the hips.

It took a few years to figure out how to reposition myself if I had to do something like grab something from underneath my bed, but now it's not even something I ever notice.

There is a really great little bonus from the surgery too: When I'm sitting in an uncomfortable chair (think back to those little blue ones with the three vertical slots) I can just sit at the edge, lean back and be totally comfortable! The rods support me entirely!

twodarray69 karma

your deadlifts must be tight af.

what are some difficulties or differences that you face when exercising compared to people without this spinal fusion?

Always_positive_guy12 karma

Not OP but deadlifting is hard for me since any force from my spine slipping out of the right alignment is carried by the vertebra at the bottom of the fusion rather than distributed along the spine. There's also a little bit of muscle loss on the muscles directly attached to the spine (fibers die off during the surgery), which for some people is an issue depending on how extensive it is. I was also very sensitive to jostling right after my surgery, but nowadays I'm pretty good on that front. I also have some issues related to where my spine sits and that muscle loss that affect my scapular stability, which used to cause some bursitis but now mostly helps my bench suck even more than my DL and squat.

KiloMetrics21 karma

Yeah, my bench is garbage. Good form means arching your back, so...

GhettoPresident99 karma

Are you able to lift heavy with no worry? What about sports?

KiloMetrics17 karma

Yep! I try my best to be conscious about lifting with my legs though, just because I'd rather keep the wear and tear on the rods at a minimum over the years.

Damaso875 karma

...they're titanium? Or do you mean where the rods are mounted?

KiloMetrics3 karma

Mountings, correct. Thanks for the clarification.

edude453 karma

I heard these spine infusions have a risk of going wrong as time goes on. Like I suppose the body rejects the foreign material. 9 years is a long time. Have you heard of the risks and do you worry about any future problems?

KiloMetrics14 karma

I've heard of the risks, but from what I've been told by my specialists it's very very unlikely. Today's technology and technique for this particular surgery has advanced significantly over the years and the risk for complications long term is quite low.

The amazing thing (again, not a medical professional I'm just parroting what my surgeon told me) is that I do have the option of having the actual rods removed. The bone, apparently, grows around them creating the structure to hold the position of the spine and will stand on its own eventually without the titanium.

For the record: If there are any actual doctors or orthopedic surgeons reading this please feel free to correct me

nurseyaf20 karma

I am an orthopedic nurse and work at a children's hospital. I know this surgery and post-op stuff like the back of my hand. You are correct. I have only seen one person's body reject the rods, but it was a congenital kid with multiple health problems. We also have people that have them removed as you were saying. They now have a rod called a Shilla Rod that a surgeon I work with invented. It grows with the child as they continue to grow through puberty. Science has definitely come a long way. Your post is nice to read because we usually don't see our patients afterward unless something has happened to the site, infection, rods breaking, etc. Thanks for sharing!!!

KiloMetrics9 karma

Thank you so much for commenting and reading! Really you all are the heroes here. If it wasn't for the amazing team of nurses, PAs, doctors, anesthesiologists, and surgeons that worked on me I could have been in an entirely different kind of situation today. Thank you. I can't say it enough, you and your colleagues are amazing people for doing what you do and continuing to do it day in day out. We appreciate you!

rusikg7 karma

I also have some titan in my spine, but in the thoracic spine, i can move my loin. Had the surgery in 2010, also at 17 years old, have some sensivity problems in the spine and legs, and coordination problems in legs. But, apart from that, it's ok. Sorry for my language.

KiloMetrics8 karma

No worries! It's really great to see so many others who have successfully had the surgery and recovered!

I actually have some nerve clusters in my torso that are numb and some that are hyper sensitive as a result of the surgery. There's a numb spot right where my left kidney is in the front, and a couple smaller numb spots spread around my back. Then there are a couple extra sensitive spots near my shoulder blades.

Then again, if you have your entire back rearranged some wires are bound to be crossed. It's never been a problem though.

hobnobbinbobthegob40 karma

Would attempting to do the worm be fatal for you?

KiloMetrics161 karma

If you imagine a hardcover book opening and closing to move across the floor then you'll have a pretty good idea of what that travesty would look like.

pl23323 karma

What is the biggest positive change you've seen since your surgery? Any negatives?

KiloMetrics78 karma

Easy, no more back pain. My curve had been so bad for so long that I didn't really think about what it was like to not have a sore back. My muscles had to do so much extra work CONSTANTLY to try to correct my curve that there wasn't a day I didn't wake up and have to massage knots out of my back.

Also, I grew 2.5 inches during the surgery, so for a 17 year old that was pretty F'in sweet.

SeriesOfAdjectives21 karma

I hope that it isn't too invasive to ask, but how's your sex life with your reduced mobility?

KiloMetrics45 karma

Again, "reduced mobility" is really not how I would describe it at all.

Try this. Go over to a wall and press your back up against it like you're getting your height measured. Now thrust your hips out. See? Not really a problem!

I can't think of a single time where it's been an obstacle or even something that I thought about in the bedroom.

hicut50 karma

Just tried. Can confirm. Mission: Thrust is still a GO.

Klutzish16 karma

My girlfriend had the lower half of her spine fused to correct her scoliosis when she was 13. She is now in her early 20s and often gets quite bad back pain.

Have you had back pain since the surgery? If so, have you found anything which works for you to relieve the pain (except painkillers)?

KiloMetrics14 karma

That age sounds about right, I was told that girls tend to have the surgery done earlier than boys because they hit their teen growth spurts earlier.

I haven't really had noticeable back pain related to the surgery in the years following. However, I did go to a chiropractor once or twice a month for a few years after. He wasn't able to do much to the fused area because it was immobile, but I'd have to imagine that if your girlfriend still has a portion of her back not fused that they might be able to help her out.

youngrtnow9 karma

to all of you who are still in pain, find a second third or fourth opinion. i work with spine surgeons every day. i have seen insane scoliosis corrections, tons of lower back fusions, etc. a family member of mine had several lower back surgeries (not with my surgeons), and was told there was nothing else they could do. after some convincing that family member saw some of the doctors I work with, had one last surgery, and is now doing better than ever. you shouldn't have to live in pain!

deathbyeturnip6 karma

I agree with this. I had the same procedure done 6 years ago and haven't experienced pain since the original recovery. I would consult with other doctors/surgeons if you are experiencing continuous pain. I do not know if this is relevant, but my surgeon purposefully left my scoliosis at 45 degrees because he and the operating team saw that anymore correction would affect the nerves in my spine.

EDIT: After reading more of this thread I see that 45 degrees still seems pretty high. Others had surgeries at that point. I had mine when my spine was at 82 degrees.

KiloMetrics2 karma

82! Do you have any xrays or pictures? I can't even begin to imagine what that must have been like.

iliketuna12 karma

How many degrees did you have? How was the pain post-surgery?

KiloMetrics20 karma

I had an S curve with 54 degrees up top and 48 degrees at the bottom at the time of surgery.

The pain question is pretty interesting. Let me preface this by mentioning that my Dad and I have both always had a high tolerance to pain medication (must be something genetic), something we've both been told after surgeries. I apparently was howling in pain in the recovery ward immediately following the surgery. I actually don't remember this at all, my parents told me about it later. The nurse in the ward had to call the anesthesiologist to come in because I had already maxed out on my allocated pain medication. According to my parents, he came in, immediately increased my dose (probably why I can't remember) told her "If you had seen what this kid just went through, you'd understand why I'm raising his allocation."

Recovery at home wasn't too painful, I had an aggressive combination of dilaudid (synthetic morphine) and muscle relaxants that I took a few times a day. Definitely a few weeks worth of being high as a kite, but luckily not much pain that I recall.

iliketuna11 karma

I have 39º and since it was borderline surgery material, I never did it. I'm too afraid to do it, and now I'm too old for it. The doctors told me it took about 6 months to fully recover and that the surgery was a blood bath and it had quite a few risks. I'm too afraid to even get blood drawn..

I'm currently at home in bed due to a lot of pain. I haven't worked since Monday and tomorrow I'm going for a MRI (another one).

KiloMetrics13 karma

I'm so sorry! You're really tough to have dealt with that for as long as you have. My only suggestion is to get another opinion. Hell, maybe get two. I'm not a doctor, or even anything close but I always feel like the more experts that can assess your situation the better prepared you'll be for whatever you end up needing to do.

Good luck tomorrow! I hope the MRI brings you back some good news!

Slimey_tomatoNZ3 karma

I had this surgery too around 10 years ago now, my doctor sent me home with two days of morphine tablets and paracetamol and that was it. That was the worst few months of my life!

On the bright side, the surgeon said I might have problems giving birth naturally but didn't have a problem having my son so pretty happy about that!

How did you find the sensitivity in your back ? I still have areas around my scar that I can't feel at all.

KiloMetrics3 karma

Ugh, that sounds like an ordeal! Congratulations on your son! (and on the problem free birth!)

I definitely have some numb spots, also some super sensitive spots. I imagine that the nerves got jostled around to make room for my spine.

prazebob11 karma

Hey man, me too. I had the surgery 18 years ago. I grew 1.5" in 4 hours! They actually took a chunk of my hip bone to do something with some puddy or something they used to hold the bars in place. I dunno, but I have 2 scars.

As far as mobility, I've noticed I can't ride a road bike for very long, because my back doesn't arch. Same with sport bikes. I do jiu jitsu though, and that can get weird sometimes.

My torso is actually a little bit twisted. Not noticeable by eye, but when I sit in a chair with a rounded back , I have to choose a side of the chair to rest against. The middle is always very uncomfortable.

How long did you have to wear your brace? I wore mine 3 months.

KiloMetrics11 karma

Instant growth spurt: probably the best part about the surgery!

That's crazy about the hip bone, I was told that the surgery methods had advanced pretty significantly and recently, so I wonder if you had an older method of the surgery?

I was supposed to wear my brace for several years! I think it was kind of a hail mary to try and stave off the need for surgery, especially since wearing it didn't really end up working in the end.

LieutenantFuck11 karma

I'm 16 and having a spinal fusion for my lumbar curve in December. I'm really scared. What was anithesia like? How did it feel? What to expect? What is life like now? Thanks.

KiloMetrics7 karma

It's ok to be scared! I was too in the months leading up to the surgery and I wanted it. Make sure you follow all of your surgeons directions and ASK QUESTIONS. Seriously, I can't say it enough. There is no such thing as a dumb or pointless question when you're in the doctor's office.

I actually had some questions that I didn't want to ask in front of my parents so I asked to talk to my surgeon/specialist alone once or twice. Don't be afraid to do that, it's your back their working on, you get to ask them anything you want.

What was anithesia like? How did it feel? What to expect?

It was a little scary going into the hospital at first, but the nurses and doctors who got me ready were all super nice and answered every single one of my questions. I changed into my hospital gown in private and slid right into the bed/gurney (it was SUPER comfortable fyi, I didn't expect that at all). They gave me a shot of this cocktail of meds they called "beer" and you're immediately chilled out and relaxed by it. I had talked to some friends before the surgery and decided that I wanted to see how long I could fight the anesthesia. They hooked me up to an IV and told me they were starting the meds (I had asked them to tell me when so I could try to fight it) and I was donezo. I was already mellow from the cocktail and it just knocked me out. I woke up in my hospital bed like 3 or 4 hours after the surgery and I actually thought I was still in the prep area! I'm not 100% sure that all hospitals will do exactly the same stuff to bring surgery patients in, but my friend tells me that my experience was pretty typical.

I mention what it's like in a couple other replies, but the short story is life is way better. No more back pain. No more brace. I'm taller. Thank goodness, it worked out well for me.

-DonnieDarko-8 karma

Holy crap! Are you ME?! In Dec 2006, I went under the knife for my 56 degree curve in my spine, and I too have two spine length rods and 8 screws! I'm 26, too. This is 2spooky4me.

Edit: Do you have a rib hump still?

KiloMetrics9 karma

3spoops5me, welcome back buddy!

I do still have a rib bump, one on the left but it's not really something anyone ever notices.

-DonnieDarko-3 karma

LMAO Left-side rib hump fam! WTF man. But yes, I've noticed it's gotten less noticeable the older I've gotten.

Do you have random patches of numb skin on your back/chest?

KiloMetrics7 karma

Yep! Numb patch where my kidney would be in the front left, a couple spread around the back too. I also have some more sensitive spots in the back as well!

colinmoore6 karma

Sup little brother?

Do chicks dig the scars?

KiloMetrics3 karma

Hahaha! Colin, my man! I had a feeling you might see this.

DF

SunsetVampire6 karma

Do you have a pre-surgery photo of your back?

KiloMetrics8 karma

I really wish I did, I know I have a pre surgery x-ray of my back but I think those all got returned to the surgeon's office. I'll dig around tonight and see if I have one though!

I have pictures of me from the front pre-surgery, but because my back self corrected, you can't really tell I have scoliosis at all unless you see my spine. My shoulders were pretty balanced.

SunsetVampire4 karma

I have a fairly minor curve to my lower spine which has caused me (also fairly minor) issues on and off my entire life. In my case looking at my shoulders you could tell but not so much by looking at my back. I sometimes lay in bed at night wondering if/how much rods to straighten it would have helped/hurt over the years but it's not bad enough to actually go through with it.

Glad to see/hear that your surgery turned out so well!

KiloMetrics5 karma

Thanks! I wouldn't lose sleep over it too much, most people have slight curvatures in their spine and avoiding major invasive surgery unless absolutely necessary is always the best option IMO.

Itztommm6 karma

Im coming up 2 months post surgery http://imgur.com/W17a33G

How long would you say it took for you to feel comfortable with your back?

KiloMetrics4 karma

Awesome photos! Congrats on the (what looks like) successful surgery! Honestly, I was so thrilled to be done with scoliosis that I couldn't stop telling people about it. I think it's a really unique experience and from my experience people were always very positive. You'll have to get used to answering questions about it though.

I always had fun telling people the same story, that I was in the jungle in Africa with my crazy uncle and got mauled by a rhino who ran out of the bushes and had to be airlifted to a medical base by helicopter. I got so good at telling that story I could do it entirely deadpan, it was really funny to watch people be like "Nooooo, that's not true. Wait. Really? Seriously?" until I would finally come clean and tell them about the scoliosis. You just have to find a way to make it your own!

yourbiggest_fan5 karma

I had the same surgery!!! Two rods, some screws, the fusion... Never met anyone else who had it I have too many questions.

How long where you on the ridiculous pain killers they give you after?

How long did you stay in the hospital/ Do you remember much?

What are your thoughts on the back brace? I had mine in middle school but it wasn't very noticeable so I didnt get teased or anything, However it was sweaty as fuck so I basically never wore it resulting in me having to get the surgery. Did you get made fun of? How long did you wear it?

Did you get any cool gifts after?

Whats the worst thing that happened to you as a result of the surgery?

KiloMetrics4 karma

Fusion! https://33.media.tumblr.com/2f23f674f44b67fc358d68bb052ecfd4/tumblr_inline_nvrpoexRoj1rakhwm_500.gif

How long where you on the ridiculous pain killers they give you after?

About a month of the good stuff. I was on a Dilaudid drip in the hospital after the surgery (had the pill form when I was at home), that stuff was CRAZY. My friend called me in the middle of the night the second day I was in the hospital and I ended up having an in depth 20 minute conversation with him. When I told him I had to go and hung up I looked at my "phone" and realized I had been talking into my pain button the entire time and had hallucinated an entire conversation!

What are your thoughts on the back brace?

I hated that back brace, eventually I just took it off when I went to school (sorry Mom and Dad). They had me in it for almost two years. I was really self conscious about it. By the end I was all about just getting the surgery and being done with the whole thing.

sweaty as fuck

FACT

Whats the worst thing that happened to you as a result of the surgery?

I had always wanted to go skydiving, but that's on the permanent no-no list. :(

yourbiggest_fan3 karma

How long was your "recovery" until everything was back to normal. Mine was VERY short but I assume that was because I was a cheerleader and only 13. I didnt stay on meds more than a week out of the hospital and I didnt have much discomfort.

Some people get the hardware removed after a while, I had mine 14 years ago so I could get it taken out if I wanted but I think thats legitimately so stupid. Have you ever thought about that? My back constantly hurts but that didnt start until the past couple years (after I gained a million pounds) so I figure if I lose weight it would go back to perfection

My doctor did tell me no football or cheerleading but never said anything about skydiving I say get a second opinion on that if you really want to do it.

KiloMetrics3 karma

I am SO going to get a second opinion on skydiving!!! Thanks for the heads up! :-D

They mentioned being able to take the rods out eventually to me too, but I would never ever consider it unless I had some complication that made it medically necessary. I love having perfect posture!

amchichelli4 karma

Hey! I knew a girl in school who had scoliosis. I now know what it is, thanks to you. we didn't have google back then. How was childhood for you? When and why did you finally decide to go in for the surgery?

KiloMetrics6 karma

Hey! Happy to spread awareness! Childhood was actually fine for me, my pediatrician identified my potential to grow into scoliosis when I was around 5 years old, but at that point there was the potential my spine would self correct the slight curvature. I ended up getting the "official" diagnosis when I was in my early teens as my spine began to self correct my curve by forming an S shape.

I was given a back brace when I was 15 at the request of my pediatric orthopedist to attempt to correct the curve without needing surgery. As an obstinate adolescent I wasn't happy about this, wearing a back brace made of plastic and hard foam around your entire torso is both uncomfortable and hard to cover up.

I would wear shirts that were large on me over the brace in order to hide it. I'm not going to lie, I was very self conscious about it. As a result I ended up deciding that the surgery was actually something I would prefer to wearing that nightmare brace, especially since month after month it only mildly slowed the curvature.

By the summer of 2006 (after the end of my Junior year of high school) my S curve had progressed to a 54 degree curve at the top and a 48 degree curve at the bottom (just look at the letter S, that's literally what my spine looked like). This meant that if I didn't have surgery, gravity would eventually take hold and compress the curve. This would have eventually shifted my rib cage to the point where it would begin puncturing my internal organs. At the same time, I was also having constant back pain because of the stress on my back. In the end I was actually thrilled to finally have the surgery and be rid of my scoliosis for good!

EDIT Upper curve was 54 degrees not 53, sorry for the typo!

diegojones44 karma

53 degree curve at the top and a 48 degree curve at the bottom

Holy shit! That is a huge amount. I can't believe the surgery turned out so great.

KiloMetrics5 karma

Tell me about it! I was lucky to have one of the best pediatric orthopedic surgeons in the country based right down the road. He crushed like 14 or 15 spinal fusions a WEEK during his peak season, so he had literally seen it all.

diegojones43 karma

I've seen people with far less curvature not turn out as straight as your seems to have. I only have slight scoliosis so I'm holding out on the surgery. I can't imagine the relief you must have.

KiloMetrics5 karma

I have too, my surgery turned out better than I could have ever expected. I was lucky to have it caught so early and monitored.

amchichelli3 karma

How has your life changed after the surgery? What have you learnt?

KiloMetrics10 karma

Well, my surgeon told me there were only two things that I could under NO circumstances do: play full contact football and skydive. So I guess my NFL and extreme sports careers were ended before they began.

What have I learned? I suppose that it's extremely important to be a self advocate as a patient and to ask a lot of questions. I was lucky to have parents that were there to be my advocate, but a lot of people go to their doctor's office solo. Ask your doctor questions, they are your care givers but they are also human beings. If you're in there on a day where something is distracting them (a breakup, death in the family, a fight with a friend) then they might miss something.

If they give you a diagnosis (or just decide to toss some antibiotics your way) ask them if it could be something else and what you should keep an eye out for. I was lucky to have very attentive doctors, PAs, and surgeons, but that is not always the case for everyone!

Moe4244 karma

As an 18yo with a 40 degree curve but without much pain, should I get the surgery now or should I wait until I am in constant severe pain?

Edit: to clarify i wouldn't need a total spinal fusion, just to clarify.

KiloMetrics9 karma

Just to clarify again: I am not a doctor and you should take the advice of your Orthopedist and/or surgeon.

That being said, that's a big ass curve. There are also a bunch of different types of scoliosis. Mine was Ideopathic Scoliosis, which basically means it just appeared without any real explanation or genetic history.

I was always told that because of the severity of the surgery (mine went well, but I was still filleted like a fish and bolted into place) it's ideal to address when you're younger and can recover quicker. But again, please please please consult your specialist and get a second opinion or even a third. It's a big decision to make and it could potentially not be necessary. Anytime you can avoid the OR you should.

Jax4877 karma

To expand on this, I have a 40 degree S curve. It appeared in high school and I wore a brace for 2 years. I wore my brace religiously because I was terrified of surgery. I was on the list for surgery after my next visit but I was so consistent with my brace (and also very lucky) that my curve was actually a few degrees better when I went in again. I never had to get surgery. I'm 26 now and it's barely noticeable. The only pain I ever have is minimal and more just aches that are easily fixed with a bit of stretching. Idk how unique my case is but pain is not at all inevitable. It saddens me to read all these comments from ppl worse off than me. Every person is different so definitely talk to multiple doctors before thinking seriously about surgery because that is extremely serious and permanent.

KiloMetrics3 karma

You're so SO right. In hindsight, I wish I hadn't been the stubborn kid I was and had worn my brace more consistently. It's also crazy that I actually wanted to get the surgery and I'm lucky that it turned out to be successful with no complications. Talk. To. Multiple. Doctors. I can't say it enough.

mums_spaghetty3 karma

Hey man, I'm 16 and had my back fused when I was 12. I'm really glad I got it done but I still have a pretty gross rib hump, which I'm really self conscious about. I was thinking of having plastic surgery to remove it (thoracoplasty?) Do you still have a hump? And if so, are you self conscious/ or does it not matter much when you get older?

Perfect posture bros :D

KiloMetrics4 karma

high five for perfect posture

You know what? I totally forgot I had a rib bump! I just have one little guy in the middle left that pops out a bit, but it's not really something I notice very often. (clearly, since I forgot about it!)

It's pretty minor for me. I'd wait a few years if I were you, you'll probably find that it's not even something that crosses your mind.

sonotimpressed3 karma

How hard is it to put your socks on in the morning?

KiloMetrics6 karma

Hahaha! Now? No problem. For the first six months after the surgery it was a definite learning process! I was 2.5 inches taller and my back didn't bend at all!

BeckyBuckeye3 karma

Hey there! I was a kid diagnosed with scoliosis at 7 years old, ended up in a brace from 12-16, and got lucky to never need surgery. I think I now top out at 19° iirc. I just have a random question: was your surgeon's name Dr. Crawford by any chance?

KiloMetrics4 karma

Congrats on the successful bracing! My surgeon wasn't Dr. Crawford.

keeper_3 karma

Couple questions, how flexible do you feel while having the rods in your back? (Like touch your toes and that kinda stuff) and two, did it affect your neck/head movement much?

KiloMetrics2 karma

how flexible do you feel while having the rods in your back?

My back doesn't bend at all, but again, you actually don't bend your back that much anyway!

I can touch my toes, but that's just a flexibility thing, I can't hunch my back so I suppose I've probably lost a couple of inches of reach in that sense.

did it affect your neck/head movement much?

Neck and head are fine, I do have to turn my torso to look all the way behind me though.

spicedfiyah3 karma

How tall are you?

I had a friend who used to have something like scoliosis, but he was short due to his back issues. He grew quite a bit because of the surgery, around 4 inches IIRC. However the surgery did stop his upper body from growing anymore.

KiloMetrics3 karma

That's why we waited so long to have the surgery, so I could squeeze out as much growth as possible before locking my back in place.

He grew 4 inches?! That's bananas. I assume he probably had a curve in one direction then and didn't have an S like me.

I grew 2.5 inches from the surgery bringing me, happily, to be 6'1"

footstool3 karma

how much did it cost? did your insurance pay? i'd like to know more about the financial side of things.

KiloMetrics3 karma

Can't really say for sure since I was a teen and my parents dealt with all of that. But it was absolutely medically necessary as it would have eventually damaged my organs without surgery. So I'm pretty sure it was covered.

StageCrewNinja3 karma

Hi, I have scoliosis too - My curves are 37 and 48 or so last time I had an x-ray. I never had surgery - but here's the important question. Can you still ride rollercoasters?

KiloMetrics3 karma

I can ride ALL OF THE ROLLERCOASTERS.

Rommul3 karma

Hey! Nice to see another fellow scoliosis person! I have a question. I actually have scoliosis, and I think it's getting worse. I'm 19, around 5'8, and my curves around last year we 38 or so up top and 24 on the bottom. I was disqualified from the USAF for that, and now they want to do surgery. I really do not want surgery. Now obviously your curve/s were much worse than mine, but did you want surgery at first? I'm scared over the loss of mobility, and other things. What would you recommend?

KiloMetrics4 karma

What would you recommend?

Get a second and probably a third opinion. I was barely a teenager when we started talking about the brace and I decided (stupidly) that I'd rather have the surgery pretty soon after I started wearing it.

Like I've said, it's not something that has significantly impacted my mobility but everyone (and every surgery) is different. Talk to your doctor, see a specialist, find out what your options are. The important thing is to be a well informed self-advocating patient. Don't be afraid to challenge your doctors and have them explain their diagnoses and recommendations to you. If they're good at their job they should be happy to.

HarrekMistpaw3 karma

Hey i got also scoliosis surgery on January this year, but as i don't remember the specific details and was a lot better in a few months am guesing yours was a lot more serious

So, question that got me thinking a lot before having it, do u trigger metal detectors? It has only happened to me one time when they passed it right by my back but am not around those things a lot so am wondering if its a normal ocurrence

KiloMetrics5 karma

Nope! Not at all, I get that question all of the time actually. I've been through many many many metal detectors since the surgery and it's never set them off.

Hepcatoy3 karma

I had the same surgery! I'm 35/F and had my surgery in 1993, one week after I turned 13. My surgeon and I decided on aggressive recovery, and I was out of bed 3 days after my procedure, and back to school 2 weeks to the day after my surgery. I have an amazing tolerance to pain due to this, as it was initially excruciating.

Would you mind to share your recovery story?

KiloMetrics4 karma

Wow! That's quite an aggressive schedule of recovery! I'm happy to talk about the recovery.

After the surgery I was placed in a recovery room and was apparently in quite a bit of pain. But I actually don't have any memory of this because of the volume of pain medication I had been given.

I actually got out of bed and walked (with assistance from a nurse) the day of the surgery! I recall it being an important part of the assessment of the surgery's success. I was in the hospital for about 3 days as well, eating and playing video games that my parents brought in while I was whacked out on pain meds. I had some friends come to visit, but I was so out of it I can't really recall what we talked about. It was great to see them though!

The morning of day 4 is when I left, it was actually pretty funny because as I was getting into my dad's car I whacked my head on the car. I didn't realize how much taller I was!

We had a pretty great computer chair at home that had a collapsible footrest and was able to lean almost entirely back and that was where I spent most of the next 3-4 weeks. I had some pain at home but I was given enough of a schedule of medication that it was never anything that I would describe as unbearable. The surgery ended up being a complete and total success.

I remember having some friends come over to my house after about two weeks and thinking that we just kind of hung out and chatted like normal. Turns out that when I talked with them a couple of weeks later when school started back up that I was high as a kite and basically just chatting about nonsense with them.

I didn't need any kind of PT after the fact, and after 4 weeks school started back up again and I just got back to normal high school life! I did have a pretty gnarly story though, and I had a lot of fun showing people the ridiculous scar.

Skumps3 karma

I had the corrective surgery when I was 15 and my doctor instead of fusing my whole spine together he evened out the curves on the lower and top part of my spine(only fusing the top part). He made sure that because he couldn't straighten my spine that the curves (while being subtle) still matched each other leaving my back still slightly crooked. Were they able to completely correct your scoliosis? I also had some complications afterwards, did you experience any? I attached a few creepy spine pictures just for fun. http://i.imgur.com/iEgLkF2.jpg http://i.imgur.com/2jP6Zrq.jpg http://i.imgur.com/4fiW1PY.jpg

KiloMetrics3 karma

That sounds like a really complicated procedure. Mine was fully corrected after the surgery. I was lucky that I didn't have any complications. Sorry to hear that you had a rough time with it!

KiloMetrics2 karma

ooh! Awesome pics! My xrays looked a lot like your pre surgery one, just more pronounced and compressed.

Justmetalking3 karma

That surgery is usually done at a much younger age. Any reason for putting it off for so long?

KiloMetrics6 karma

A couple of reasons actually! First, we wanted to see if we could correct it without surgery through using the back brace. Clearly that didn't work. Second, because of the totality of fusing my entire spine they wanted to give me as much time as possible to continue growing.

There is also a gender difference, girls tend to have it done much earlier in their teens, while boys can put it off a bit longer because of the disparity in timelines for growth.

WealthyBigWang2 karma

I also have scoliosis, a mild form. It makes my ribcage effectively 'poke out' the front of my chest, and there's a surgery I want to get which will break all my ribs and reset them to what they 'should' be like. My question is have you heard of anyone who has had this kind of surgery and is it worth it?

KiloMetrics2 karma

Someone else mentioned a cosmetic surgery to correct a rib bump earlier but I hadn't heard of it until today. Frankly that surgery sounds really unpleasant and probably unnecessary. I have a rib bump on the left and it's not really something I ever think about. I've said it before, anytime you can avoid the OR, you should.

PladPlato2 karma

I might have to have this and I'm really scared. What parts of my life will change. Will I be able to have sex?

KiloMetrics2 karma

Don't be scared! If it's medically necessary then you're going to be much better off in the long run having had the surgery.

You'll definitely be able to have sex, it's not something that I've found to be affected by it at all!

honakerjj2 karma

What was your final curvature post operation? My daughter has scoliosis that was caused by a syrinx (cyst) in her spinal cord. They inserted a shunt into her spinal cord to allow it to drain where it will remain there forever. Now that the neurosurgeon fixed the underlying issue, it is now turned back over to the orthopedic surgeon to figure out when the best time to perform the spinal fusion. We take her back to see him in a couple weeks. She currently has a 52 degree curve so I was curious as to how straight they will be able to get her. Thanks.

KiloMetrics2 karma

That's an interesting question. I don't know if I'd take my case as a measure against her situation. My scoliosis was idiopathic, so it didn't really have any additional complications. Your OS will likely be able to shed much more light on what he thinks is achievable.

Televisionblues2 karma

I had a scoliosis surgery as well. I hope you're doing good.

How long did it take you to recover from surgery?

KiloMetrics5 karma

It was a little less than a month before I was really back to total mobility and didn't have to be careful about tweaking my back or ripping the stitches.

Acciofanai2 karma

I studied that spinal fusion would interrup the growth of your back. Is it true? Are there some negative aspects concerning the operation?

KiloMetrics2 karma

My surgery did halt my growth in my back. However, it sounds like there are new technologies and hardware that can help with that! That's why I originally waited so long, so I could squeeze out as much growth as possible before surgery

zearan2 karma

Trying this again, but this time with a question.

Hey, fellow scoliosis patient here. Had my third back surgery 3 weeks ago and now I'm also part titanium. Before this I had steel rods attached to my spine, but loose screws and infection made them take everything out and install titanium instead.

Small album with x-rays

I was told to avoid heavy lifting for a few months and contact sports forever. Did your doctor give you any lifetime restrictions?

KiloMetrics1 karma

Woof, sorry you had to go under twice! My only restrictions are full contact sports and skydiving (though I may try to get a second opinion on that)

HMPoweredMan2 karma

[deleted]

KiloMetrics4 karma

Only when I'm wearing a tux

Sports_Addict2 karma

My job is to test integrity of motor and sensory functions for patients undergoing spine and brain surgeries. If I notice any insult to any pathway, I let the surgeon know and if the correction is made within certain time, patients recover fine.

Do you remember someone asking for consent in pre-op area to test your motor and sensory pathways during the surgery?

There are so many team members involved in this surgery, and they all take pride in their work. My question, what do you remember from the day of the surgery?

KiloMetrics2 karma

Thank you so much for everything you do for your patients! I said it earlier, but I want to stress to everyone that you are the heroes here.

Do you remember someone asking for consent in pre-op area to test your motor and sensory pathways during the surgery?

I wasn't asked for consent prior to surgery, but I was also a minor and my parents were dealing with all of that side of the equation. I'm certain they were asked and gave consent. In any case, my fingers and toes are all working and aside from a few sensory numb spots I'm fine! Also, the numb spots, while not able to sense at the top level react normally to pressure.

There are so many team members involved in this surgery, and they all take pride in their work. My question, what do you remember from the day of the surgery?

There are SO many members, you're absolutely right! From the day of the surgery I remember that I didn't get to see Dr Reing (my surgeon) before I was knocked out. Dr Patel, his PA was with me though from the second I had walked through the doors though. He talked me through every step of the process and could not have done anything more to make me comfortable.

The post-op portion of the day was a blur. I vaguely remember walking a few steps in the late afternoon. You know, 9 years combined with a massive amount of medical grade narcotics in my system kind of makes it tough to remember anything more!

Please give my best to your team and tell them that their work is appreciated! You too, you rock!

acemonkey142 karma

I had the same surgery as well! 6 years and 4 days ago! Well anyways my question is, did you have a option as to not have it completely straight? I also had it pretty bad, but there were no present complications so there is still a slight curvature to my spine. The reason I had the surgery was to prevent future pains. So was this a decision you and your family took, or what was the case?

KiloMetrics2 karma

I was never told about an option involving not completely straightening it out. I think it's probably because it was so severe and was also an S curve. Mine was medically necessary because gravity would have eventually caused my ribs to puncture my internal organs if it had gone untreated.

AdilB1012 karma

Did they call you the Aluminum Monster?

KiloMetrics3 karma

Nope, plus it's made of titanium! Come on!

You'd be surprised at the number of people who believed my story about it being the result of getting mauled by a rhino though :)

AdilB1012 karma

I was referencing It's Always Sunny in Philadelphia.

KiloMetrics2 karma

Hahaha, I totally missed that. I loved that episode though! +1 for you sir

Chuff_Nugget2 karma

Amazing read - thanks for doing the AMA.

QUESTION : are you aware of there having been any British techniques used in your surgery? The reason I ask is because my mum (died at a ripe old age from general old-age issues) was one of the more documented and lectured-about cases of scoliosis. The techniques used on her (including titanium on one of her later surgeries) were pioneered in the UK.

I've still got her first spinal restraint (internal stainless steel brace with hooks that were screwed into her vertebrae) sat on a shelf. It was removed in favour of full fusion and titanium - much like your good self.

She had kids, lived a great life, and was content when her time came. First surgery was in the early 1960's I think when she was 15.

Rock on man!!

KiloMetrics3 karma

Thanks so much! Glad you've enjoyed it!

I'm not really aware of much in terms of surgical techniques performed during the actual operation. That's so cool though, I actually had no idea scoliosis was treated with surgery that long ago! I would love to see what that spinal restraint looks like if you'd be kind enough to snap a picture!

Cheers to your mum too! Sounds like she was a pretty great lady!

Chuff_Nugget2 karma

My mum rocked. Couldn't grumble about a thing near her without feeling like an idiot. She'd always say "it could be worse" and get on with things like a champ. She actually moved to live closer to the RJAH orthopedic hospital in Gobowen, and was repeatedly operated on by a surgeon named Eisenstein - he's retired now, but he's a great guy and a fantastic pioneer. I suspect that the techniques used in your surgery have been perfected and taught by him.

Fun fact - I grew to be taller than my mum TWICE. She got taller after the fusion and titanium went in, and I had to out-grow her a second time. That's nearly 25 years ago now. (I'm 38 now)

I've taken some pictures... If you want more just say!

http://imgur.com/a/vGmMM

I became an engineer and always wanted to see the titanium: we made a deal that I'd get to keep it after her cremation.... But she went all "Eco" and decided on an Eco-burial a few years before she hopped the twig. Good for the planet, bad for my curiosity. We giggled about it.

All the best! Take care, and rock on!!

Edit. Forgot to add - those hooks snapped off eventually and floated around hitting nerves from time to time. One of the ball-fixings is missing - I suspect that was never found! The packet says it was removed in '86. I thought it was later than that.. Time flies huh?

KiloMetrics2 karma

Thanks for taking the time to show us the hardware! It's really fascinating to see how it was corrected in the past versus today's techniques!

sup3r_hero1 karma

why did you decide to do the ama now? after so many years?

KiloMetrics3 karma

I saw someone post their post-op picture of the scar on imgur (see the link in my original post) and there were a lot of people who seemed interested but not many who knew what it was from! I've talked with a handful of people who've had the surgery over the years but frankly not that many.

I remembered how self conscious I was about my brace and about having the issue in the first place. I wanted to see if I could remind everyone with scoliosis that they're not alone. Most people get diagnosed and have to deal with it during their teens, which are rough enough without the potential for major surgery.

It's great to see all of the positive comments from everyone who's dealt with scoliosis and spinal fusion surgery!