Seventeen years ago, I found myself dealing with idiopathic scoliosis and two major spinal curves: one was 74 degrees and the other was 55 degrees. It was the severity of my condition, and the fact that I really had no other option, that pushed me to undergo surgery. For so many reasons, having surgery was the best thing I could have done, but even still, there are a few things no one told me.
Here’s my list:
1. When the morphine began to fade, I freaked out.
By the time I had surgery, I had dealt with spinal pain for a good three years; I was convinced I could handle any pain. I thought I could deal with anything. Boy, was I wrong. It hurts. It hurts like a sonofabitch. The level of pain is astronomical. As soon as my magical morphine button was taken away from me the devil itself came out of me. I was seriously freaking out. I was not in control of my body, my mind, my pain, and it was tough. I couldn’t sleep. I thought I was going to die from the pain and discomfort, and it got so much worse before it ever got better.
2. Death by sneezing.
Sneezing, I think, was one of the worst things that happened to me after having surgery. Before I had surgery, I had this super vicious, lion-like sneeze. I would sneeze and you could definitely hear it, you knew I had just sneezed. But after surgery, sneezing felt like someone was sawing at my ribs and lungs. It. Was. The. Worst. Feeling. Ever. Naturally, to avoid the horrific pain I felt every time I sneezed, I simply held it in as much as possible, which led to my current mouse-like sneeze. It is so pathetic most people do not even realize I am sneezing.
3. I had to go #2 before I could go home.
It is a terrifying experience trying to poop after having major spinal surgery. I don’t care how many stool softeners they give you or how much prune juice your mama makes you drink; you will feel absolutely certain that you are going to die on the toilet. But you can’t leave unless you go and my doctor was super intense about this, too. It was particularly difficult for me. I get so stressed out when I feel pressured.
6. Then they pulled out the fucking arterial line from my neck.
I don’t recall my doctor ever mentioning, “Oh, by the way, we are going to insert this giant tube in your artery and then remove it once you are fully awake.” Lucky, for me, I was totally passed out when they put it in, and in fact, I didn’t even realize it was there until the time came to take it out. I remember the nurse telling me that I shouldn’t feel a thing. Yeah, right. As she tugged and pulled it just kept coming up. It was like a worm that had started attaching itself to my artery was being ripped out. To put it bluntly; you definitely feel it.
5. I wasn’t as good as new.
Prior to surgery, I had this idea that I would no longer be curvy and that I would come out like a brand new person. I thought that the surgery would correct the curve and make me straight, just like everyone else. Unfortunately, surgery didn’t change the fact that I have scoliosis, it simply tried to correct it. Despite the fact that I had four ribs removed and bone graft added to my rib cage, I can still feel my curve. Sure, this made my deformity less visible, but it didn’t change the way my body felt. Even though I couldn’t see the deformity, I still felt it, I still feel it, I am still aware of how it affects my body every single day.
6. Pain never went away; it’s always there.
I remember thinking that I would be pain-free after surgery. Just like I was convinced that surgery would fix all my problems. The truth is, surgery doesn’t fix everything. It makes certain things better, but pain is definitely not one of those things. Do not get me wrong, the pain changes, and in some ways it is better, but unfortunately, surgery did not fix all my pain, it only changed it.
7. Had to say goodbye to balance and coordination
Waking up after scoliosis surgery was incredibly mind-blowing. All of a sudden, I felt like my body was foreign, as if I underwent the procedure and woke up to find that the surgeon had given me a new body. It was one of the strangest feelings I have ever experienced.The next day, I felt like bambi on ice. I was so wobbly and uncoordinated. My body didn’t respond the way I wanted it to, and I just kept feeling like I was going to tumble over. It was so surreal. Unfortunately, though, I never really did regain my balance and coordination. I am still one of the clumsiest people ever.
8. What does it even mean to be flexible?
I know it sounds crazy, but I was very flexible as a kid. I had no problem doing a split, and backbends were nothing for me. But after surgery, all that changed. Titanium and a few screws killed all of my flexibility, and I don’t remember what it feels like to be flexible.
9. I felt like a broken record.
I have no idea how many times I have told my story. I’m pretty sure it has to be thousands by now. I wish I could say that I am use to it, but I am not. I don’t dislike telling my story, but at a certain point it starts to get slightly repetitive.
10. People do not know what scoliosis is.
Scoliosis affects 15-20% of the world population, yet there are still people out there that have no idea what it is. I am happy to explain it to anyone who doesn’t know what it is, but I wish there was more awareness about a condition that is extremely common worldwide.
12. There are things I shouldn’t do.
I have titanium rods and screws alongside my spine. This means I am at a risk of puncturing any one of my organs if I have a serious accident, so as much as I want to do high-impact activities, I shouldn’t. I have to be mindful of my body and aware of my own limitations.
13. Injuries take forever to heal
I am 30 years old; I am not a spring chicken but I am also not 85. Yet, my body does not heal at the rate I wish it did. I fell down concrete stairs last year, and I am still trying to recover from the impact of that fall. Due to the rods and screws in my spine, any impact or injury can cause internal bone bruising, which takes forever to heal. Trust me, I don’t recommend injuring yourself after having scoliosis surgery; the recovery takes forever.
And that’s a wrap! Did I miss anything? Let me know by commenting below!
The Curvy Spine 
This is bull crap. I had the surgery and many people I know did also, yes you feel horrible for about 3 days then everyday is better.. Finally you are straight and pain free.. NO one I mean no one has ever talked like this person has about the surgery.. Also I had a heart ablason at the Cleveland Clinic. They were right in my heart with tubes and I was totally awake.. YOU do not feel much at all..
Sorry you feel this way, Kate. This was my personal experience. I suffered a lot through surgery and I still have pain. Because my experience is different then yours doesn’t mean it’s bull crap, it just means we went and have been through different things. I am, however, happy to hear that you have a different experience and that you do not suffer through pain 🙂
Kate, im so thankful, your experience of pain was only 3 days! Watching my sister in law deal with the agonizing pain, was heart wrenching. I was there daily, and there was never an easy task, she was strong and brave, and dealt with more pain than any 12 year old ever should. It was life changing for her not once but twice! She still lives in pain but does not dwell on it and makes the most of everyday, lives life to the fullest, and has a heart of gold. I so wish everyday that her story was bull crap, that it was a bad dream; that she never had to suffer through all that pain. BUT the reality is its all TRUE! She lived it we all lived it. She is now sharing her stories with others, which I think is amazing. So Kate be grateful you and the others you say are straight and pain free in 3 days! But for her it was not that case. It’s unfair for you to say her experience is “bull crap” just because it was different from yours!
Thank you so much, Jenny! I almost cried reading your comment. You were one of the angels by my side through it all. It was a super hard journey, but I couldn’t have done it without all the love and support I received from you guys! Love you 🙂
Kate, you should really learn how to write grammatically correct English before posting things that, obviously, you have no clue about.
Your goal in tarnishing a writer’s perspective on their personal journey is what? Are you a doctor? I really doubt it. If you were, you wouldn’t have such poor judgment and lack of empathy, not to mention jumping to conclusions without gathering all your facts first.
Research, widen your perspective and learn how to write before you post an uneducated opinion.
I has surgery 40 years ago and no one warned me how hard it would be. Of course back then they used Harrington Rods and I personally had to wear a plaster cast for 6 months. Recovery was more painful than having 4 children with no epidurals. It was hell.
No one said not to do any high impact activity. I stopped ice skating but did karate, rode roller coasters and anything else I wanted to do. Fast forward 40 years and now I’m in daily pain with so many problems. Not one doctor linked my spine with my symptoms. I had to ask for a specialist and he diagnosed me with Flatback Syndrome. I’m out of balance and my scoliosis is now in my lumbar spine. My back is toast. The only thing I can do is some complicated revision surgery.
I’m glad I had as many good years though. Who knows what would have happened and so far I’m still working but probably not for too long as a design consultant. Thank you for sharing your journey
Hi Nicole,
I, too, had a Harrington Rod spinal fusion (1978) and my first stint in a very thick, heavy body caste which dug into my occipital bones and hip bones.
The worst part of the pain as well as actually realizing the full consequences is after the surgery but I mean forever after.
I’ve taken tremendously good care of myself over the ensuing years and even though my pain is not visible, I’ve suffered and still do with sharp pain and that feel of limiting inflexibility.
In 1990, I had to have the surgery again as the 18” steel rod had broken in half with the cervical end poking through right beneath my skin.
Another 6 months in a body caste. Second time around was worse because I knew all the things that no one tells you like you’ll be as good as new, straight and pain free.
I remember my mother and father were my angels. I could never have gotten through this without their love and support.
Currently I’m suffer greatly from cervical nerve impingement (trigeminal nerve is pressed on by deteriorating cervical disc) resulting in occipital neuralgia I.e., severe constant intense headache lasting for weeks.
My back surgery was hell. The doctor screwed up and I woke up screaming in pain yet paralyzed from the waist down. I should have had emergency surgery to drain the giant blood clot on my spinal cord. My surgeon didn’t answer any of the many pages and not a hospitalist in sight. So instead of waiting 1 hour for surgery, I waited 26 and now have chronic cauda equine syndrome. I have more pain than ever and I can barely get out of bed some days. My active, athletic lifestyle is over forever (it’s been 12 yrs) I went through so much rehab for my back and none of it helped. I developed scoliosis as well. Recently I was married. I had little time to buy a dress and no time for alterations. When I saw the pictures, I cried so hard at the ugly lump on my back. This has been a nightmare.
Wow, Julia! I am so sorry to hear about your initial surgery and all the complications involved. It is really hard looking in the mirror and realizing that your reflection doesn’t match the image you expect to see. It honestly took me a long time to look in the mirror and accept the girl, woman looking back at me, was in fact, me. Surgery, complications, pain can cause so much anxiety and depression and getting out of that space is so challenging. Taking the step to spend the rest of your life with someone is a super positive thing and I hope it brings wonderful things to your life. Pain and suffering is part of life but it doesn’t have to be all-consuming. Sending you a big hug your way.
I’m so sorry to hear about the challenges you faced during your surgery and what you still continue to experience. Regardless of what is posted here, YOUR EXPERIENCE IS VALID and it’s what you experienced. I think you’re brave for sharing these challenges here. I know plenty of people who have had spinal surgery and their story is similar to yours. Surgery may help some people more than others; and it may not be that much of a help for others. I myself have not had surgery for my scoliosis, but one thing I can relate to you on, is the sneezing. Sneezing really is the worst! Lol. I literally go weeks trying to hold in my sneezes, because if I do let them out, it aggravates my back, ribs, abdomen, neck, you name it. It’s horrible! You’re not alone in that! And people who don’t have to think about this type of pain, they have no idea that a sneeze would cause so much trouble. Lol. I feel you on that. But thank you for sharing your experience here. I think it’s important for people to know what it’s like after surgery, and that not all things can/will be fixed. There will still be challenges afterwards and it’s not a fix-all. Thanks for being brave and sharing your experience. Regardless of what others may believe, this is your personal journey. Keep staying true to yourself and keep sharing to inspire others and help them through their healing process. ~hugs~
Thank you so much for this comment, it has made my day! I spent all day today in bed trying to avoid moving from the pain I was in and reading your lovely comment really made everything so much better. It has been an incredibly challenging journey. I had two major surgeries and they were both equally horrible, and then I fell down the stairs last year, and I am still dealing with my post-injury recovery. I wish I could say that my experience was a smooth sail, but it wasn’t. However, I am not sure I would have done anything different. The degree of my curve was so bad that doctors told me I wouldn’t make it to 30 if I didn’t have surgery. Thank you so much, again, for brightening up my day! xoxo
Reblogged this on 4 Seasons Health – Blog and commented:
One young lady’s experience of scoliosis surgery
Thank you! xoxo
Eliana, your experience humbles me. I know you must be exceedingly strong within to cope, and continue to strive forward. I know you have wonderful support about you; it goes without saying how powerful positive people are to have on our team. Though, having said this, I know how alone we can be and feel, even with the greatest of loving individuals surrounding us. My hat is off to you. Well done, and continue to be your own greatest supporter.
Hi Carolyn,
Thank you for understanding for for the lovely comment. It is hard. I try my hardest to explain how it feel or how it felt, and it’s not always easy for people to understand. I do give people a break though. It’s hard for anyone who isn’t going through it to understand. Scoliosis is particularly challenging, because no two people are really alike. My sister has scoliosis as well, but her curve is so slight that it hash’t affected her. I hope that my posts help some people that are going through it and bring awareness to those who have no idea what scoliosis is. Hope you have a lovely day and thank again for stopping by!
#Big heartfelt Hug to You Eli.# i wish hugs can magically take away pain. I really wish so. At least,i shows i feel your pain.
You are so cheerful, light hearted that i had no idea you were dealing with this.
And you are right! But for this article i had no idea what Scoliosis is. Hell, i never heard of it before.
Thanks for the enlightening and educative article on it.
Thanks, Mary! I’m really good at hiding it – I’ve had years of experiencing in pretending I am not in pain. It’s hard sometimes. This is why I don’t go partying too often, because when I do, I generally can’t move for like a week. So I tend to avoid it 🙂
Thank you so much for this post. It is truly helpful! If you don’t mind me asking, what are high impact activities?
Hi! High impact activities that I’ve done but have caused tremendous amounts of pain include: jet skiing because the bounce in the waves or if you fall off it’s also terrible, wakeboarding or knee boarding which causes the same pain as jet skiing, skiing in general because if you fall can be terrible but if you decide to ski I wear those back protectors that knee boarders where just in case, horse back riding because of all the bouncing, mud runs are really not ideal for anyone who has had surgery, and really any activity where you can fall at high speeds or there’s too much bounce because if you do fall you can seriously injure yourself and if you don’t and just have to deal with the bouncing you will be in tons of pain. Hope this helps 🙂
I had the surgery a few years ago as a 13 year old. I had worn a full back brace for 2 years before that. Night and day. When I was 11 I had surgery because 2 vertebraes were pinching my brain stem. Causing severe headaches and could have caused brain damage. After the surgeries I found that it was hard to gain weight. I was always small, and after the surgery and the 2 week stay at the hospital I had lost 10 lbs. I didn’t want to eat anything, and I always felt full, because the doctors had to pull on my stomach muscles I also found that knee boarding is painful. But I found horse
riding to be okay, I live on a ranch. It is painful on tall horses with a rough trot and lope( bouncing), but with a quarter horse pony it is fairly smooth. Unfortunately my legs are not strong enough for water skiing, although I tried several times.
Thank you so much for sharing ❤️
I have double major curve scoliosis. I’m 61yo. I have had three spinal fusions in the last 40 years, the first in 1979. On my last visit to my neurosurgeon after my third surgery (2010), I told him that I was still in pain. He said, “Well, you’ve been fused from stem to stern. That’s par for the course.” Great. Everything you said Curvy Spine was spot on. I am deathly afraid of falling. Another thing they don’t tell you is that there actually is no cure for scoliosis, so fusion is a treatment for scoliosis, not a cure. And one more: They don’t tell you that you may need to be fused/repaired/extended more than once during your life–all that progression and wear-and-tear. For those of you whose spinal surgery left you with little or no post-surgery complaints? That is great!
Wow, I’m really hoping that I don’t have to have another surgery for a while. I e had 2, and both were horrible. The recovery takes so long and you are never really the same. What do you do for pain management? Are you able to walk ok?
I can walk, but not far without pain. Osteo-arthritis is setting in. Thanks for asking. Grocery carts are great, but I get my groceries delivered now. I use a wheeled-walker with a seat for lengthy excursions. I’m about due for a repair/adjustment on my titanium rack. As for pain, OTC analgesics, glucosamine, TENS unit, heat, ice. Sleep is not good. I’m actually quite active during the day, because there is no position, standing, seated, or prone that doesn’t eventually hurt. About a year before and just after my last surgery (2010), I used prescription painkillers. I realized that because I had less pain, I would do physical things that accelerated wear and tear from torque. I still take care of my yard–just takes longer–and my equipment is all-electric.
Amazed to hear someone suffered for 3 days. Not the norm. My first surgery I spent 17 months in plasters casts from under my chin to the top of my legs. The last surgery in 2014 for 3 rd curve and pelvis collapse I spent 15 days in neuro ICU and took 6 months of home care and crawling on my hands and knees to recover. The pain from recovery was excruciating . And 5 years later I am doing great. I have fallen several times. Broken wrist, leg and some severe cuts. It’s easy to topple over!!! I am back hiking the north Georgia mountains for day trips and we bought a class A motorhome for long travels. I am 64 and have lived a full life with scoliosis. I delivered a 11 lb baby naturally. We are strong women and have good and bad days. I do highly recommend neurosurgery over orthopedics because many re care is taken to avoid nerves when placing all the hardware! I wish I had thought about writing about my experiences. I was one of the first and first to carry babies to full term!! I hope all is well for you now!