Hey Reddit,

Just a warning: Some photos are NSFL

I found out when I was 7 years old that I had scoliosis. I had to wear a back brace for four years... almost 24 hours a day, everyday. My curve progressively became more severe and in 2009 I had a "full" spinal fusion. It has now been 7 years since my surgery, and I feel very grateful to have been able to have this surgery. However, going through such an immense and permanent change to your body, is not always easy. I would love to share my story, and hopefully help and support people who have scoliosis, or are about to have / has had a spinal fusion. Before my operation, my doctor offered to take pictures of the progression of my spinal fusion. I have included them in the last three photos... for anyone who is curious of what a split open back looks like, and the person essentially being turned into wolverine. I won't hold anything back, AMA!

Right before surgery and right after spinal fusion: http://imgur.com/a/mStDq

Post-Op: http://imgur.com/gallery/O4G5Z/new

PROOF: http://imgur.com/Ek7qNJr

EDIT WOW. I did not expect such an immense response to this post. It has been such an amazing experience to be able to connect with all of you. I just want to say, I am not trying to exaggerate the term "survivor," and I am not trying to say that I am special. There are many many people who are in or have gone through worse situations than I have. I just want to help if I can by providing support and guidance based on my experiences. What makes me happy about this post is that it became a place to be open, share, inspire, and support each other. This surgery is not a walk in the park, no matter how well it goes. Spinal fusions are extremely complicated and invasive operations. I feel lucky that my surgery was successful. I will try to read every single comment / question and respond if I can. Thank you all so much for your interest, questions, and support!

PS This post was unfortunately taken down a few hours after posting, because I am a noob, and didn't know I had to provide proof in time... -.- Please watch this video for a formal apology and thank you for being a part of this AMA ;) https://youtu.be/HS0EUkqR9I4

Comments: 1314 • Responses: 37  • Date: 

X-FER1402 karma

Just looking at that makes my back hurt, but I'm also hungry for ribs now.

Do you still have pain? Will it ever progress? One of my cousins has had scoliosis and she had corrective surgery but her pain level is getting worse, she's only in her early 20s and she's on all kinds of pain meds.

Edit- of course my most upvoted comment is about an open spinal surgery giving me a hankering for ribs. of course it is.

Here's to hoping /r/unexpected_cannibalism isn't a real sub

Huzzahtime436 karma

I'm glad I'm not the only one who thought those back-photos seemed kind of appetizing.

8/10 would eat during nuclear winter

-WPD-51 karma

The fork-like things didn't help either

ysabeau44 karma

YES! WTF right?!

ysabeau374 karma

You,re not the first person to say that. I had another AMA and someone said the same thing...

I do still have pain in the form of tightness and stiffness. I can constantly feel the rods in my back. It's a pulling kind of feeling, but you get used to it. What sucks is getting muscle spasms. They can be incapacitating. I am sorry to hear about your cousins pain. The truth is that think this is normal. I think pain will always be a part of life after a fusion. It's not a natural thing. Does your cousin exercise?

bishopazrael140 karma

I've had 3 abdominal surgeries. If pain is going to be a constant in your life like it is for me... I learned something ....... cool. I started telling myself that I liked the pain, that I could stand it. After a while I can "feel" it....but its like... pushed back a ways from consciousness. Breathing, focusing, finding my center... and then feeling and accepting the pain.

chocolate_on_toast37 karma

I have a lifelong pain disease and i did a similar thing! I used to imagine my pain as a big ball of dough and I'd metaphorically reach out to it, grab it and examine it. Eventually you learn 'yup, that's my pain, it hurts but it won't kill me' and somehow it's not so bad.

I also went through a big mental/emotional thing of changing my expectations. I'll never be pain free. If I keep pining after a pain free life all I'll get is frustrated, angry or depressed, possibly all three. So forget about being pain free and change your whole life script to include and work past the pain. Once you accept it, you can move on and achieve stuff!

ysabeau14 karma

Very proud of you for being so strong! I am learning everyday more and more about managing my pain and hope to conquer it one day. Take very good care of yourself.

bonobi33 karma

I had to wear a back brace for four years... almost 24 hours a day, everyday. My curve progressively became more severe and in 2009 I had a "full" spinal fusion. It has now been 7 years since my surgery, and I feel very grateful to have been able to have this surgery. However, going through such an immense and permanent change to your body, is not always easy. I would love to share my story, and hopefully help and support people who have scoliosis, or are about to have / has had a spinal fusion. Before my operation, my doctor offered to take pictures of the progression of my spinal fusion. I have included them in the last three photos... for anyone who is curious of what a split open back looks like, and the person essentially being turned into wolverine. I won't hold anything back, AMA!

Thanks for this. It's reassuring to know that coming to terms with pain is attainable.

I feel very lucky to have had a corrective surgery on my back after the first one went bad. Long story short: I was poor and a Pro-Bono doctor performed a L4/5 Discectomy & Laminectomy (where they take out part of the vertebrae to make room for the spinal cord due to Stenosis (narrowing of the spinal cord). It went bad and the doctor skipped the state. He left me with massive scar tissue and partially bed ridden.

Luckily I got on assistance 5 years later (after a lot of pain) and a great doctor was able to remove the scar tissue causing my nerve pain.

However, I've still got Scoliosis (albeit mild) and now my upper back is starting to cause pain with 3 herniated discs and my lower will eventually need to be fused at some point in the future.

Whatever I'm going through I still feel very lucky to have had the successful corrective surgery and never let it stop me from any goals. I also never take for granted those who aren't as lucky as me and try my best everyday to make sure I'm worthy of my luck.

One thing that always gets me though is after moving to Massachusetts or anywhere, every time I see a new doctor they always treat me like I'm a drug addict and don't seem to understand that I will have to live with this pain. I've done my best to mitigate it without medication but there will always be days I will need it.

I think I've finally found a doctor that (after a year and several drug tests and previous MRI's and surgery documents) believes me and we're starting to work together instead of her against me. Part of it is due to the stupid laws that make it hard for them so I understand to a certain degree.

whew...that was cathartic

Thanks again for helping me feel not alone in managing pain from back surgeries and I wish you all the best in your futures!

ysabeau9 karma

You are never alone! I am so humbled and amazed to hear your story. You have been through the ringer and yet you still maintain such a positive attitude. You are an inspiration. I am SO glad to hear you found a doctor who is listening to you and truly making an effort to find a solution. Finding doctors like this is so important. If you don't already (I've been preaching this all over the place tonight) but go to yoga and pilates if you can. Ask your doctor first if that is safe, but the stretching for me helps relieve a lot of tension and pain. Take good care of yourself and keep your chin up!

drewman7724 karma

I had my scoliosis surgery 30 years ago. I can tell you the muscle spasms will go away and the tightness and stiffness are only felt in the middle part of my back. I will recommend having whole body massage as that helps me a lot.

The interesting thing is that I have far less back problems than the average person (judging by their complaints). You can't slip a disc for one thing.

Good luck with your recovery!

ysabeau6 karma

This is true! A perk of the surgery. ;) It is a relief to hear that your pain has subsided. I truly hope the stiffness and tightness will fade for me too at some point. Going to make my massage appointment tomorrow. ;) Thank you for your comment. :)

Mutinous_Turgidity6 karma

For the love of got get therapeutic massages I've been an LMT for years and I have worked on so many fusions that I can usually nearly fix your back tension within a matter of weeks. Just be sure to interview your massage therapist about what they specialize in and check up on it. A good LMT is worth every penny. A bad one can hurt you worse. The modalities I would look for are rolfing, grasten, myofascial, and just good old fashioned deep tissue stripping work.

ysabeau3 karma

I will look into it, Europe is a whole other ball game with this kind of stuff though... especially where I live. They are not as progressive as the US.

bentplate75 karma

Not OP, obviously, but my wife had pretty much the exact same surgery as OP and is 10 years post-op. She had increasing levels of pain and found that the best thing for it is exercise and massage. In particular, she found that Rolfing was the most beneficial and most lasting form of massage. When she first went to see a Rolfer, she had parts of her back that were so bound up they felt like bone. She literally cried with joy after her first appointment because she felt so much better. Recently she has found that strengthening her back with weight training has actually improved her flexibility. She's always been a runner and swears that running is a great way to make her back feel better too (maybe blood flow?). It's not a perfect procedure, but it prevents catastrophic results from severe scoliosis and fortunately she has found the right recipe to keep her back feeling good.

ysabeau57 karma

I am so happy to hear that your wife has managed her pain through exercise and massage. I also cannot stress enough to others going through this how important it is to exercise. I am working on pain management now, pilates and yoga helps tremendously. As time progresses, for me, the pain is indeed getting worse. I feel like I'm 85 years old in a 26 year body. I am in desperate need of a massage... my back is a mess. I will definitely look into "Rolfing," but I live in Europe so I am not sure if they have this technique. Give your wife a high five for me!

HeDiddleBiddle267 karma

Were you bullied in school for having this back problem?

Do you have any close female friends who calls you their ScolioSister?

ysabeau450 karma

I was. I remember being around 10 years old, and some boys at my school would throw rocks at me because I "couldn't feel it" through my brace. I had one classmate say to me, "at least I can stand up straight." That kind of stuff. Wearing clothes over a back brace was humiliating for me. It was very uncomfortable, you could sometimes see it through my clothes, and of course anything that's strapped to you for 22 hours a day will make you sweat quite a bit, so it just felt awful to be "trapped" in this thing. It's basically a warm up to the spinal fusion since the brace also limits your movements. I have not been called ScolioSister yet! I am called wolverette and bionic woman though ;) Thank you for the question.

arpsazombie163 karma

I was in your shoes. Also female, also have scoliosis, also wore the full brace, but I was 12. They threw rocks at me too, and because for some reason my brace really curved out at the chest area, they called me "football tits" middle school was awesome. Oh god yes the sweating...... I live in Phoenix, AZ, where it's already really hot. My brace also gave me blisters anywhere it touched my skin.

Glad your fusion went well and your are doing so good. My parents refused mine as a child. I'm 35 now are really suffering badly. Hope to get my surgery in the next few years.

ysabeau27 karma

I can empathize with your pain... but omg..."football tits"?? Really?...that's beyond disgusting for someone to say. I am sorry you went through that, especially about your parents involvement, but I imagine you're a tough cookie now and don't put up with those people. I hope you get your surgery soon. Until then, take good care of yourself. If you have any questions or need anything, you can always PM me.

Mechanical_Gman7 karma

So with all the metal (titanium?) can you actually bend over? Can your spine flex at all?

Edit: spl

Edit2: I probably should have read more of the comments... (answer below)

ysabeau22 karma

My spine is not flexible at all... only at the top of my back (shoulder area), and at my hips. I can rotate my pelvis and I can twist my upper body to the right and left.

the_jacked_scholar128 karma

What was the worst thing about your experience?

ysabeau278 karma

The realization that I will never be able to bend my back again, and that I have forgotten how it feels. I really took it for granted before my surgery. Freedom of movement is such a gift. Being restricted by two titanium poles is a big change to your body and can be tough to deal with sometimes. So, I would highly encourage anyone who has had a spinal fusion to keep MOVING. Yoga and Pilates is an excellent way to improve your flexibility and strength. Otherwise, it can feel like you are living in an 85 year olds body.

UndisputedGold356 karma

I will never be able to bend my back again

You'll always have good form with squats and deadlifts

ysabeau179 karma

One of the perks of the surgery... impeccable posture.

J03_66111 karma

Ugh, nearly full length, I had around the same length. Did you enjoy waking up in fallen off scabs as much as I did? Also, have you thought about getting a tattoo of a zipper at the top?

ysabeau153 karma

The scabs falling off made me SO happy because they were incredibly itchy! And, Of course I have thought SO many times about getting a zipper tattoo! Or just a tattoo down my back...something symbolic of the spine and the rods, but I'll never do it. I appreciate tattoos but I would never want one.

Frentis82 karma

Hello

I have a couple of questions, I hope that's alright.

Firstly what are some advice you can give to someone, who have someone close to them that are getting a spinal fusion?

Second: What is something unexpectedly good or cool, you have experienced by getting your spinal fusion?

By the way, those picture of your spine are pretty interesting, it's really interesting to see how it actually looks. Thank you for doing this AMA!

ysabeau103 karma

Of course that's alright. Thank you so much for your questions! The day after a spinal fusion, the nurses already ask you to walk, and you are expected to walk as much as possible. However, for at least a month to a month and a half, your strength will be limited, and you might tire quickly like I did. This means a lot of time on your back in bed. What meant the most to me was when family or friends would come to visit me, and they would just sit with me and binge watch "24." I was very grateful to have people just relaxing with me, because it felt frustrating to not be able to go out and do normal things. Oh and if you're really going for bff status, bring your friend their favorite dessert or snack and they will love you for all time. ;)

The cool and unexpectedly good part of this experience has been the people I have met on this journey. Fellow curved people, fellow "screwed up" people, :p and even people who are just supporters with no relation to scoliosis. I have made some wonderful friendships and have found healing in being able to share my knowledge and offer support for anyone who needs it.

GearlyBeloved20 karma

My girlfriend is having a spine fusion done later this year and is incredibly nervous (as am I). She's pretty athletic and has always been a very active person. Any tips on how to quench the thirst for activity? I imagine laying around in bed all day starts to get old...

ysabeau21 karma

I would just say to her that post-op, anything she feels comfortable doing, and where she is not in pain is a good thing. It's incredibly important to move as much as possible and try to get back to normal life asap. The pain should not really last longer than two months. I would say at 6 months, you should feel fine, but still, a full recovery can take a year or longer for some people. Squats are a great exercise, also weight lifting, and taking walks outside... easy activities that aren't hard on the body. I wish you both the best of luck in the future, and please let her know if she ever needs advice or has questions you can always PM me.

Madlutian56 karma

How did it feel when it really sunk in that you'd never have to wear the brace again?

ysabeau75 karma

The told me when I was 14 that I had "stopped growing" and that I could take off the brace. I felt relieved and ecstatic when I did not have to wear that thing anymore. The doctors told me I wouldn't have to worry about surgery at that point. As it turns out, 5 years later, I noticed that sitting in a chair had became terribly uncomfortable. I knew my curve had gotten much worse since my brace came off... but I really hadn't been monitoring the progression the way I should have with x-rays every six months. I went to boarding school, which also made it tough. I finally went back to my doctor and the x-ray confirmed my spine needed to be fused straight.

Zizekbro51 karma

Do you watch It's Always Sunny in Philadelphia?

Spokebender47 karma

Congrats! You got me beat by about a dozen screws but 8 was enough for me. How did you like that waking up feeling like you were hit by a bus? Fun stuff!

ysabeau43 karma

Hey, it's great to meet you! How long has it been since your surgery and how are you feeling now? Waking up is a very foggy memory for me... I don't remember a lot. Take good care of yourself!

BigGuyFU45 karma

Can you bend over and touch your toes?

ysabeau77 karma

Yes, I can! Fairly easily. The challenge is, of course, to maintain that stretch for a significant amount of time. I go to pilates and yoga classes to stretch and work on my flexibility.

maxt45839 karma

Are you able to feel the metal if you ran your fingers along your back?

ysabeau39 karma

Yes you can, but only in the location of the screws, and only a few of them at the top of my back that are a bit more pronounced than the rest.

unbeliever8737 karma

I'm just going to ask, how different is sex/intimacy after the surgery?

ysabeau44 karma

Thank you for your question, it is an important one. Depending on the surgery, sex and intimacy will not be the same. It doesn't feel as natural, and it's uncomfortable. You are basically trying to move your body in ways that it physically can't do anymore, which makes it hard for me to "be in the moment." I haven't had a situation where I can't be in a certain position yet, but I am still very self conscious about having sex, because in my head I feel like my limited range of motion makes me a bad lover, because I'm not as "sexy" as women who can move however they want. It's also very draining if you aren't in tip top shape like me at the moment. You need more strength post-op if you want to be in positions where you are contributing to the "work." However, I have never had a complaint, and I've always been reassured by my partner.

IK0033 karma

Ortho surgeries are fucking brutal. Ever time I watch one a get a few involuntary shivers. Usually when they bust out the power drill or mallet.

Recovering an ortho patient is tough to watch. As the anesthesia wears off and we start dialing in the analgesia you can just see the whites of their eyes getting bigger and bigger like their brain is saying "Well, that was a nice nap...wait...wtf? Oh HEEELLLL NO!"

ysabeau26 karma

It's funny, I don't remember being startled and aware of pain at that time. I just felt very uncomfortable and out of it. They rolled me into the recovery room and that's when the pain suddenly was unbearable. I cried for an hour until they finally gave me morphine.

BigPete22618 karma

Post-op, in the weeks/months after surgery, what are some of the hardest things that you had to do, that the average person takes for granted?

ysabeau48 karma

The hardest things to do when recovering post-op are really all just from re-learning how to move your body in a new way, and adapting to that feeling. Luckily, the pain killers helped a lot in the beginning, so the pain is really not too bad. Sitting up SUCKED... especially at the dining room table, and so did trying to get out of bed... omg that was, I think, the most uncomfortable part. Think this: https://www.youtube.com/watch?v=9l3HprPGMHk

thelegendofzorlda13 karma

Do you know what company your surgeon uses? I sell spine implants and am curious. Looks like a larger company like Depuy, or Medtronic. Also, that is a great looking Xray, not everyone gets a full correction like that. Congrats on your recovery.

ysabeau6 karma

Thank you so much for your comment. I will email my doctor and ask.

sorry_wasntlistening13 karma

No before pictures?

ysabeau16 karma

Sorry, you're absolutely right. Here are two photos from right before and after my surgery: http://imgur.com/a/mStDq

TheHeroYouNeedNdWant12 karma

I have a good friend who has the same condition and also had a full spinal fusion. She doesn't let it stop her either. Thank you for doing this AMA. My question is. What tasks do you find most difficult to do day to day that weren't as bad before the surgery.?

ysabeau24 karma

Ok, full disclosure: in the beginning of your recovery post-op, daily tasks will of course be much harder, for example, bending to pick something up off of the floor. As the years go by, you adapt and can move very well. I do not find that there are too many daily tasks that are challenging. I can do just about everything I used to do before surgery. I would say, currently, the most difficult day to day tasks are: putting on socks and certain types of shoes/tying my shoes. Walking for long periods of time, or standing too long (especially in heels of course). My back tends to get pretty stiff if I do not exercise, or exercise in the wrong way, or sleep on a bad mattress/pillow. This can sometimes lead to muscle spasms and pinched nerves. When I have a bad knot in my back, it drains a lot of energy, and I end up not being as productive during those days. It's like being sick, you just don't feel 100%. The challenge is that even though you can barely move, the best thing you can do is to push through and keep moving and stretching! I am not sure if this counts as a daily task ;) but the only other thing I can think of post-op that is difficult is sex. It's a bummer. You just can't move the same way, you get all self conscious of course, and it can be uncomfortable if you're not in great shape.

Lanko12 karma

I thought this was a remarkably interesting post... and then it got deleted? :(

Edit: I'm reviewing the AMA rules and I'm not seeing how this violated anything. Can anybody tell me why this post was removed?

ysabeau6 karma

I did not delete it... so I am not sure what happened in our case. :( Maybe try again later?

Kingdonk09 karma

Those last two pictures are crazy! Do you set off metal detectors going through them?

ysabeau14 karma

I actually never set off metal detectors!

Tsanker758 karma

Can you run and/or exercise?

ysabeau11 karma

yes I can do both.

Default855 karma

Do hugs hurt?

ysabeau14 karma

Not at all! Hug

bonermiIk5 karma

How was it explained to you that this condition developed? Is this hereditary?

ysabeau13 karma

I have "Idiopathic Scoliosis." In my case at least, 80% of the time, the cause is unknown. There are studies that suggest that scoliosis is caused by both genetic and environmental factors. I know my mom has it slightly, and I believe her mother does as well.

shuyalee4 karma

Awesome to see you looking so happy! 1. Is sleeping really awkward now you have the titanium in there? 2. Does your scar tingle when it gets touched?

ysabeau9 karma

Sleeping isn't awkward now, it totally was in the beginning though. Now, just sleeping in some positions, like on my side, puts too much pressure on my spine and it's uncomfortable. A good mattress and pillow is so important. I HATE touching my scar. It just feels weird I can't describe it... it just doesn't give me the good feels. However, sometimes I get lucky and I get back scratches... which are over the scar, and it feels great. One weird thing that has happened from the scar has been feeling incredibly itchy on my back, fairly often, so the scratches are heavenly.

improbablewhale3 karma

Hello :)

First of all, thanks for sharing your pictures. I've had three back surgeries, one of which being a near-full spinal fusion. It's nice to see people with similar experiences.

It's now been about five years since my last surgery, and I was wondering what your pain has been like since your experience. I've had trouble with pain management and related disorders, do you have any tips/tricks/anything like that?

ysabeau3 karma

Hey there! I love meeting so many fellow bionic babes. Can I ask why they had to do so many surgeries? For me it was only one. As far as the pain. I experience pain every day at some level. The lowest being a stiffness. The worst is having muscles spasms that make it very hard to move (for up to a week in my case). I basically have a heating pad strapped to me for most of the day. The reason I believe I am experiencing more discomfort and pain is because I have not been exercising as much as I should. It's important to exercise 4-5 days a week. Start small, set yourself small goals. For example, "Today I am going to work out for only 15 minutes, and if I feel like continuing, I will, but I don't have to because I accomplished that goal for the day. Go to yoga and pilates classes... this for me is heaven. I always feel so much more balanced, energized, and strong after all that stretching. Best thing you can do for yourself in my opinion. Also, do not forget to take care of your emotional well being and eating a clean diet. Write in a journal everyday, record your feelings, thoughts, pain, what you ate, how you felt afterwards...etc. I would also look into juicing. Super healthy and helps keep you energized and ready for exercising. Oh, and take a lot of baths if you can! Every night before bed is best. Go buy some epsom salts for the bath, and even add in a few drops of lavender essential oil or Geranium oil. I hope that helps!

sfemti333 karma

If you're comfortable saying, what hospital was this performed at?

ysabeau3 karma

Childrens Hospital, Los Angeles

Starfire663 karma

Was this done in a single operation, or multiple?

Thumbs-up to a fellow smith-peterson osteotemy recipient. My pelvis + 10 vertebrae are fused solid. Hell to bend over, but much less pain than I was in before. I'm 5+ years out from it now if you want to ask any questions about the recovery process. I spent over 20h in the OR in 3 phases, as they had to remove an older version done with harrington rods to prep for the new hardware.

ysabeau3 karma

I am sorry to hear you have pain... I can't imagine a fused pelvis. You are a champion. I only had one operation. Can you tell me a but more about your experience? How long ago did you get your first surgery? What was the difference in hardware?

Fjoergyn_D-4 karma

Just a warning: Some photos are NSFL

Imgur didn't get that warning. While I can stomach it, some people can't, so could you please edit your post on Imgur to include a warning?

Also: What's the spinal brace made of? Adamantium? And how long did the whole surgery take?

ysabeau3 karma

Sorry about that! Thank you for letting me know. I am new to Imgur and I tried googling how to mark the post as mature, but nothing I tried worked... it has now been successfully marked as mature. I was told by my doctor that the metal is titanium. The surgery was around six hours. I was woken up ten minutes after surgery so the surgeons could make sure I hadn't been paralyzed. The next hour was the worst pain of my life, because they had me laying on my back and it took them an hour to give me morphine. After that, it was smooth sailing... comparatively.