Scoliosis Post Op: 2 Years! + FAQ's

Hello, Lovelies! I get to celebrate 2 years of post-op, and believe me it has been quite the journey, and I still feel like I'm healing! Now even though this is posted on the 18th my post op was actually on the 13th, but I actually had another surgery seven years ago on this day, which was a bone graph for my cleft pallet, I accidently got the dates confused, but I kept with the scheduling of this post that way I wouldn't rush this because I really want to go in depth of where I started and how far I've come with scoliosis.

So without any more rambling, let's get started!

This is what scoliosis looks like...

It's sleepless nights tossing and turning. Constantly fidgeting in your seat, trying to get comfortable. It's crying to yourself wishing the pain would just go away. It's telling people "cracking" your back will only make it worse. It's hoping it won't go up another degree. It's trying to do everyday tasks that shouldn't be "that difficult". 

Scoliosis is real, most people don't know the impact it can have on someone, in my lowest moments, it was because of scoliosis that made me feel worthless at times. I refused to let it define me, though, that "S" curve of mine, stands for STRONG! It stands for the mountains I would later climb over to get to where I am now. Honestly, I'm thankful that I had scoliosis, without it I might not have pushed myself to earn straight A's my junior year of high school, while on homebound recovering from Spinal Fusion. I wouldn't have learned what a lack of self-confidence felt like, I needed scoliosis to reevaluate myself at a time in my life where I was discovering who I was, but that doesn't mean I was ready for it. 

I was on my way to get a passport to go on a cruise the summer before my junior year, I was so excited, but we happened to pass my doctors office, which I hadn't been to in over a year and had missed an appointment a few weeks prior. My back had been hurting lately, so I talked my dad into taking me down there to check things out. I had x-rays taken a couple months ago, but never got the results on those...(spoiler...neither did he) I walk in and they told the doctor I was there, and I assume he pulled up my file and saw my x-rays had come in, so he checked them out and that's when my world changed. He called me back straight to his desk where a huge monitor had my x-ray pulled up, and this is what I saw...

I had at least a 50-degree curvature and in the US that is when surgery becomes mandatory. He told us the options and apologized for the outcome, apologized for removing me from my brace, but was sure to add "but you're one in a million this could have happened to". It made me feel like I was at fault, it made me question why "I" had to be the "one million" of a chance, and then anger set it, why couldn't a DOCTOR have seen these foreshadowed events earlier, before it was too late, but everyone is human, no one is perfect, but in that moment I couldn't see that clearly.

I went on to get my passport and looked forward to one last HOORAH before my big surgery which ended up being about 6 months later. In the meantime, I wore my back brace constantly to alleviate the pain (it was the only thing that worked for me), I talked with my friends about the situation I was in, I stayed up watching countless surgery videos and post op stories, and trying to find other people going through this. 

When my surgery date rolled around I had already had blood work and various other tests done a few months prior to August 13th. I got to the hospital at 6 am. My surgery lasted around 6 hours, I had my current boyfriend at the time there with me, my mom & dad, my aunt & cousins, and my grandma there with me. They all were my support system for the remaining 4 days I was at the hospital. 

My biggest support I would have to say was my boyfriend at the time. Emotionally having someone to talk to while my parents were talking to doctors was comforting. I highly recommend having a friend or significant other come with you on the surgery day, and to be there when you get settled in your own room. I couldn't walk around yet, but I wanted to know where I was so my boyfriend took my phone and videotaped the whole floor I was on so I could see. He got me food and drinks from the kitchen on that floor and was a healthy moral support system for me. Even though we broke up, I still am forever grateful for all the patience and care he gave me during that period of my life.

The first few weeks of recovery was probably the hardest, for multiple reasons. Number one, sleeping was difficult due to being uncomfortable from laying down constantly, I actually got bed sores after awhile (I recommend walking around your house every few hours, maybe everytime you go to the bathroom, walk around the house as well) Number two, I decided it would be the perfect time to read the fault in our stars at this point in time... I was WRONG! I cried constantly and being on medication did not help at all! Number 3, my mom got the flu 2 weeks after I got home, try going from constantly having someone help you get up and down to having no help at all when you're a little loopy on meds. I recommend having a walker close by, if you need to get up and walk by yourself, I would imagine it would help tremendously.

I was on homebound for about a month and a half until I got to go back to school, honestly, I loved homebound, but it's not for everyone, but it's something you kinda have to just do to keep up. My teacher actually lived really close to me, so he would drop off my work and go over what I had to do and check my previous work, it worked out really well, and I had him my freshman year so I already had a relationship with him. I started vocational school that year too, and my teacher actually came to my house and dropped off my work as well. Communication with your teachers is key to keeping up in your classes.

By the time I started back to school I still was sore, but I could walk around for longer periods of time, but the day I went back we were having a tailgate at school for homecoming, so I got to sit in lawn chairs in the parking lot while my friends made hotdogs and hamburgers, it was nice coming back to school during a relaxing day, instead of sitting in a classroom for 7 hours. 

Tips for Back to School after Spinal Fusion

• Keep a small pillow in your locker in case you need padding for the chairs
• Find a friend to help you carry your books, or ask to keep your books in the classroom
• Ask for your work to be on a computer so you don't have to carry around a bunch of binders (typed assignments, scanned worksheets instead of carrying around a workbook, emailed powerpoints instead of taking notes, ask to record lectures so you can skip taking notes for long periods of time)
• Wear comfortable clothes, in the long run, you don't need to impress anyone, you already have the coolest spine in school, who else can say they have titanium rods inside of them?
• Keep a jacket with you (if you get cold, your back will get tense)
• Invest in a rolling backpack (if you have to carry books, this makes it easier to pull around instead of added strain on your back
• Communicate with your teachers of what your needs are (Do you need out of class 5 mins early? Need a softer seat? Sit in the back or front of class? Etc.)

It seemed like every day my back felt better and better. Still to this day if I sit up for long periods of time with no support on my back, I get really tense and stiff, that's normal to me now. I keep healing more, still to this day, and I learn new things about myself and my spine.

Things I have learned since Spinal Fusion

• If I get hot, I sweat a lot more. If I get cold, I tense up and have minor pain.
• If I stand too long or lay down too long, I get sore.
• I can't twist, bend, or run (comfortably).
• I gain weight much easier
• My period cramps have worsened (more back pain)

Even though these seem to be all pain related, I sometimes forget I had rods inside of me. I feel no pain what so ever on a typical day, I feel comfortable and don't have a constant ache like I did before.

Now for the FAQ's:

Q: Do the rods ever hurt?

A: I do feel some sort of pull along where the rods are, but I don't believe I'm feeling the actual rods. What I found to be "painful" (it's more uncomfortable than painful) is my muscles adjusting to my spine being straightened. As far as the rods hurting me, no I haven't noticed that.

Q: What was the curvature of your spine before you had surgery, and what is it now? 

A: My curvature got to about 52 degrees, and now it's around 2, my surgery almost fully corrected it, my spine was very flexible. An x-ray of the flexibility of my spine below...  (the more flexible your spine, the better results for surgery)

As you can see, they (nurses) stretched me out and my spine nearly looked normal.

Q: Can you bend over?

A: I can bend over at my hips, but my spine can not bend. I usually crouch down when I need to pick something up, or if I need to bend over for any reason.

Q: Do the rods decrease your mobility?

A: For me personally, no. But I'm not a gymnast. As far as doing everyday tasks and being able to exercise, and live a normal life, it does not bother me at all, or affect my mobility, except for trampolines, I can never jump on those again.

Q: Is it possible for the rods to bend?

A: My doctor told me no, I have heard of cases of it happening online, but it's not from reliable resources. It does happen it's rare and hasn't happened to me. It would take a great amount of force/strength to bend the rods, the kind of strength I do not have, haha! 

Q: Does the scar ever itch?

A: YES! When it is healing it itches, a lot. Guess what, though? That is great! It means it's healing, I recommend not scratching it, though...try dabbing it with a clean towel with the bandage over your incision, that way you have a decreased chance of infection.

Q: What did you feel like before surgery?

A: As far as pain, I felt miserable, I was tired and irritable due to lack of sleep from staying up with it, I always felt uncomfortable, but some days I would feel fine, as long as I kept myself busy.

Q: What did you feel like after surgery?

A: I felt very drowsy, stiff, and weak for the first few weeks. I couldn't sleep due to being uncomfortable, so I went on a road trip. I would get out and walk around at every stop. When I got home that night I got the best sleep of my entire life! Progressively I felt better and better as weeks went by, now I still get uncomfortable if I sit in awkward positions, but if I keep my back straight I don't even notice that I had surgery.

Q: Is it weird to not be able to bend?
A: At first, it was very strange, it was like learning how to move again. I hated when people would ask me to pick something up because I would automatically try to bend over with my spine and it would be uncomfortable, but I learned to crouch down or bend at my hips, which is actually healthier to do anyways.

Q: Did it affect your breathing?
A: When your spine is curved it pushes on organs inside of you, mine was mostly curved closer to where my lungs were and I noticed my breathing when I had to do testing for it. My parents had better lungs than me, and they are smokers. After my surgery, I felt like I could hardly breathe, like my chest was really heavy, almost like someone was sitting on it. I'm not sure why I felt like this after surgery, but it did fade away. Do not panic if you feel like this, just calmly try to breathe, watch TV and get your mind off of it, focusing on it only made it worse for me.

Q: How do you exercise, if you can't bend?
A: I struggled with this a lot after my surgery. I actually gained almost 35 pounds in my first year after surgery. My self-esteem was very low and when I hit the scale at 148 I swore to myself I wouldn't hit 150. My body type is pretty small, I've always had thicker thighs, and a little fat on my tummy, but it bothered me more because I felt tired all the time, not as much the way I looked, which I didn't look great either...here's a little before and after...

I started dieting and exercising a little more and have lost almost 15 pounds. I feel so much better and I'm happier now, but I still have some more to go, but it's not about the weight it's about how I feel. Remember that! If you want to check out some exercises you can do check out my post The Best Exercises for Scoliosis.

Q: How do you shave your legs? 

A: This question is kinda funny, not because the nature of it, but because it can actually be a struggle. At first, I couldn't bend to shave, so I would get really frustrated but I have learned how to shave now, sometimes I sit in the tub and shave instead of standing and trying to bend. Sometimes I sit on the edge, and sometimes I prop my leg up on the side of the tub. It's all about what makes you comfortable, it doesn't really change that much, but at first it's frustrating, at least it was for me.

Q: Do the rods hurt in the winter?

A: I wouldn't say it hurts, but it gets uncomfortable, if you get cold, the rods get cold, so you tense up and feel...well...tense. To help with this I wear layers in the winter and make sure I have a warm coat/jacket. Another way to stay warm is to keep a heating pad with you, my boyfriend actually has an electric one that in the winter he will plug up for me and gives me a blanket so I can stay warm.

Q: Can you grow out of the rods?

A: I am done growing, they made sure I was before they did the surgery, but there was a little girl at the hospital with me who had to have the surgery multiple times, due to her still growing, she was around 3 or 4 years old. If you can wait till you are done growing to try to, but your health comes first. I wore a brace until I could have my surgery to help keep it from getting worse.

Q: Any tips to curb the pain?

A: For me, heat was my best friend. I notice when I'm cold, I feel tense and uncomfortable, but not painful. Keep a heating pad close by, warm jackets and blankets. I only took my pain meds for about a month, I don't recommend staying on them because addiction is a whole other issue, but don't live in pain either. I never had to have physical therapy, walking is what they "prescribed" me, so maybe walking could help. I used ristance bands to help exercise my back muscles in a low impact way, which helped with the tenseness of them, which may help ease the pain. 

Q: How do you get around after surgery?

A: I wasn't moving a whole lot immediately after surgery, but the next day I walked a little bit, but as soon as I got back to bed I felt sick and dizzy, but I never threw up. I recommend a walker to help you if you can't always have someone right beside you, but you really need someone holding on to your arm to help steady you. 

The second time I got up. The first time was at 4 am!

Here are some more photos from after surgery:

My spine 4 days after surgery, I couldn't stand up straight but you can see the rods.

My incision

This was about a month after my surgery, as you can see the scar is already hardly noticeable at the top

This is where my incision actually opened after my surgery, my mom closed it back up with the tape strips you see here. It wasn't painful, but it just thickened the scar.

Share with me your story! Comment any other tips you have learned along the way, I'd love to see and hear what you all have gone through and how you made the best of it! Subscribe and follow me on social media for more things scoliosis and join me through my little journey through life :)

Disclaimer: I am in no way shape or form medically trained, all my answers are based on personal experience, but before you do any of the things I suggested, talk with your doctor. Best of luck to all my scoliosis readers in their own journey!