Guys. I want you to know that no one will ever be more scared for having major spinal fusion surgery than I was. I thought about it from the minute I found out I had scoliosis, to 4 years later when I had the surgery. I cried, I sweated, I stressed, I ranted, and I prayed. And I got through it. I did it. And you can too!!
The Road to Surgery
If you find out you will need the surgery and you get your official date set up, don't even lie to yourself, of course you're going to worry at first! That's completely normal! It would be a little weird if you didn't worry at least a little. The day I found out my official surgery date I burst into immediate tears. It felt so real. But the best advice I can give to you is just enjoy the days, weeks, or months you have before surgery. Think more so like "this is my last beach trip with a curvy spine!" or "this is the last time this top will look funny on me!" etc. And just try not to even think about it! Enjoy your life like you've never enjoyed it before. Enjoy your last moments with your friend scoliosis. Just don't even think about surgery, take it one day at a time.
Do Your Research
Before your surgery, google every question you have. Read lots of articles and facts about scoliosis surgery. Watch youtube videos. Research the hospital you're having your surgery at. Talk to people who have had it done or message people in a support group. I promise you it feels so much better to have some knowledge about what the process will be like than to be clueless.
The Day Before
The day before your surgery (or sometimes 2 days or more, depending on your doctor) you will go in for a pre-op appointment. Yours may be different, but it will most likely be similar to what mine was like.
First we went into a little room where people would be coming to visit with me throughout my appointment to discuss surgical matters and run tests, etc. I got more X-rays, got my blood drawn, and got a blood bracelet that I was required to wear on the day of my surgery, otherwise I would not be able to have the operation. I got pictures done of me bending down and different side angles to see the visible effects of my scoliosis before surgery. I talked to a dietician about foods and allergies and what I could dine on during my stay at the hospital. I did some breathing treatments with a respiratory therapist, I talked to a pharmacist about after-surgery medications, I talked to a child-life specialist about my fears and concerns regarding the surgery (that helped tremendously). I talked to some research coordinators who wanted to take blood and skin samples during my surgery to research the cause of scoliosis, I talked to my OR nurse who would give me my drugs and IV before surgery, and I talked to my surgeon and his assistant who would be operating on me. That's a lot! Not to mention plenty of paperwork to be filled out!
I also got to go see my in-hospital room that I would be staying in! That was my favorite part. There, a nurse informed me more about what my stay would be like.
The final day before surgery you will also receive all information regarding where to go and what time to be at the hospital in the morning. You'll also find out-ugh-when you have to stop eating and drinking. No drinking was especially hard for me because I always get thirsty during the night.
The best part is you get to pick your final meal on death row! (Jk) I wasn't really hungry the day before my surgery, but I picked fried chicken and mashed potatoes with gravy.
Also for the nights leading up to surgery you will probably be prescribed medical wipes to cleanse the area where they will make the incision and everywhere else on your body as to prevent infections. Those weren't fun because of how sticky they made me feel, but I didn't get any infections, so make sure to do it!
That night, I didn't sleep at all I was so nervous. During my last shower before surgery that night I basically had a mental breakdown, and I felt so sick. I knew it was all just in my head and I did my best to take deep breaths and pray. My best advice I can give to you is meditate in God's word and pray pray pray. I also posted in my support group asking for advice and prayers which helped a bunch.
The Day of Surgery
The day of surgery will be a little different for everyone depending on the hospital, but it will be relatively like my experience!
My arrival time was 7 AM. We got to the hospital around 6:45 and headed up to my hospital room. Once I arrived there, a couple of nurses took my temperature and my blood pressure, things like that. Then, they put numbing cream on both of my hands where the IVs would go. (Scottish Rite is the best). After that, I had about an hour and a half before I was to go to the holding room. During that time my family prayed with me and a chaplain came to visit and also prayed with us and gave us cool stickers! Then I changed into my beautiful red hospital gown with cowboys riding horses all over it, and some comfy non-slip socks. Then it was time for me to climb up onto the rolling bed that would take me to the holding room. I was thankful for the nice warm blanket that was on it to cover me! I was wheeled through the halls and down the elevator to the holding room.
The holding room was by far my favorite place. The room was orange and had a beautiful lit window painting on the ceiling for me to look at. And I got to watch Curious George! Comforting right? This was where I met again with my OR nurse who gave me my first IV filled with water-thank GOD!-and some medicine called Vallium to help relax me. But what really helped was some medicine he called "the margarita" that made me basically really loopy. I'm honestly so happy I received this medicine before my operation because all it did was make me feel happy! I was laughing and playing with the blow up pad that was underneath me and I couldn't stop talking! I really think this is the perfect thing to give to someone who is super anxious about going under. After I joked around with my OR nurse (David), and my parents who were able to come to the holding room with me, and after I visited with my anesthesiologist, my nurse who would be with me during surgery, and Dr. Ramo, I was wheeled into the operating room, giggling the entire way. I remember seeing a huge x-ray of my spine on the wall in there and the very last thing I remember was one of the anesthesiologists talking about my nails and how the colors looked like the little mermaid. She said, "Alright little mermaid nails.." And that was it.
The next thing I knew, I was barely able to open my eyes as I whined about being thirsty and wanting cheesecake. God knows why I thought I wanted cheesecake, I was NOT hungry. But I was in another holding room where patients go when they are finished with surgery. I remember asking the nurse who was there if it was over and him telling me yes, it was all over. I don't remember very much more after that. I don't remember being wheeled back to my hospital room at all. All I remember is waking up off and on to say hi to my visitors who would come in 2 at a time. I also remember my mom joking that I would be up and doing jumping jacks in a minute, and I started crying! Anesthesia really plays with your emotions!
A few hours after I FINALLY got to munch on some ice chips to get my mouth wet. And a few hours after that, I got to have a couple of saltine crackers! I remember they tasted amazing. Throughout the night, my nighttime nurse would come to roll me over once an hour. She would give me medicine through my IV and let me have sips of water and check on my heart rate, etc. I had so many wires and tubes hooked up to me! Including a catheter, an epidural, and a blood bag.
Recovery
Throughout my days spent at the hospital, I wrestled between, pain, nausea, discomfort, and zero appetite. I won't lie, the recovery was hard, but if I can get through it, so can you! And the nurses are always there to help. Everyone, however, is different during the recovery process. I've talked to some whose recovery was super easy, some whose recovery was more challenging. For me I was in a lot of pain in the beginning of my recovery because my Narcotics weren't working on me. After we figured that out, we were able to switch to a different one that worked tons better for me.
The day after surgery I sat up and walked for the first time. After
I did it once, I preferred walking to sitting or laying down since it was hard to get comfortable.
More than likely you will not have much of an appetite for a while after your surgery. Mine didn't really come back for at least 2 weeks. Your stomach kind of tends to go to sleep when you have anesthesia and it takes longer for it to "wake up". At the hospital there were tons of food options to choose from for all my meals, but normally I preferred crackers, pudding, or ice cream. You will also most likely get constipated from the Narcotics you'll be on, so I recommend eating as much fiber as you can once your appetite comes back a little. My favorite thing to munch on during my recovery while I was constipated and lacking an appetite were pretzels and hummus!
I was able to go home 3 days post op and each day I got better and better! For me, something different would effect me each day. One day it would be just my upper back hurting me, the next day it would be my shoulder blade, and the day after that would be my side. I needed help doing everything. the first week my parents had to set a schedule for my medications and would rotate shifts at night to come give them to me or help me roll over. My mom would wash my hair for me in the shower and would make sure I was fed. I have to admit I was pretty annoying and high maintenance from day 1 post op all the way til about 3 weeks. It took me about 1 week to get most of my personality back, thanks to my sister who would watch movies all day with me or keep me in stitches. It was about 2 weeks before I was able to do a few things on my own, like heat up a meal in the microwave or get dressed by myself, etc. Around 3 weeks I got even more independent and was able to go out and do a few small things like church on Sunday or grab a quick meal. Then at about 4 and a half weeks, I was pretty much back to normal! It felt great to be able to go shopping and visit family and friends. And just be normal again! During your recovery process try not to get down too much. Even though you're a little handicapped for a while, try to look on the bright side! You can watch movies and sleep all day! There's nothing bad about that.
Things you should bring to the hospital
I honestly packed way too much! I didn't use my cute hair clips or my perfume; I didn't even get up to open my suit case the entire time I was at the hospital. All you really need (besides your tooth brush) is:
some comfy, loose-fitted t-shirts-once you feel like changing out of your hospital gown you will need some clothes that are super comfortable and easy to slip right on
soft, comfy shorts and/or pajama pants/sweat pants
thick or fuzzy socks-you will be walking around your hospital floor once you're able, and you won't want to put on shoes
a body pillow-the hospital will have pillows for you, but only regular sized bed pillows. The body pillow is great because you can put it between your legs and kind of snuggle it while you're on your side
a stuffed animal or teddy bear-It was really comforting to have something cute and cuddly to sleep with during my time at the hospital
a gaming system if you have one-I brought an old fashioned gameboy and my Nintendo Switch to keep myself distracted, and it really worked!
an extra blanket and even more pillows-for me, after my surgery I was really cold, and still am much more cold-natured to this day! It was nice to have an extra blanket with me since the hospital tends to get cold, and it's especially good to have pillows because you will need them for your car ride home!
Chapstick-immediately after surgery your lips will probably be puffy and very dry, and your eyes will probably be swollen since you will have been lying on your stomach for so long. So don't forget it! You'll thank me later.
Ladies-bring feminine products!-The stress of surgery on your body can cause you to start your period afterwards, even if you were already on it that month! Don't panic if you get yours the day before surgery either, your nurses are prepared for that and you can still have the operation!
Anything that you think will make your life easier-after surgery, you don't want to focus on anything but getting better, so to make it a lot easier on yourself, try to think about things that will help you feel more comfortable or help you worry less. Bring your sunglasses or a sleep mask for your ride home. Bring your extra comfortable undies. Bring your stress ball! Only you know what will make you feel the most at home.
Recovery tips
Once you are at home, you will need to alter your every day lifestyle a bit while you are healing. These are some things we did to help me during my recovery:
Get a chair for the shower!-while you are recovering, standing for more than a minute will start to hurt and make you pretty sore. We found a pretty cheap plastic chair from Big Lots for me to sit in while I took a shower. Also, you will need help showering likely for the first 2 weeks. I would wear a trash bag and swimsuit bottoms during my shower, and my mom would help to wash my hair since I had trouble reaching up there. You also will probably be advised not to get your incision too wet and/or let running water from the shower head hit it, that's why a trash bag might be a good idea.
Have a bell on your nightstand-during the night I would wake up every few hours feeling really stiff and needed help rolling to the other side, or I needed some more pain meds, a drink of water, etc. So I kept a little bell on my nightstand to ring throughout the night so someone could come to my aid. I know it isn't fun, and you might hate having to disturb your sleeping family, but after a major spine surgery, you gotta get what you need to heal!
Keep a sheet under you-to help you roll over, a sheet is best because your mom or whoever is helping to take care of you can pull it up and easily roll you to the other side. You will also learn this is the technique used at the hospital!
Use lots of pillows-just like in the hospital you'll want lots of pillows tucked under your back to support it and definitely that body pillow! I preferred sleeping on my side after surgery, but I've heard lots are more comfortable on their backs, so if that's the case, I recommend a pillow to go under your knees!
Use icy hot, heating pads, ice packs, and numbing patches on your most painful areas!-(just not directly on your incision of course) these all helped me tremendously!
Zero gravity chair!!-my neighbors luckily had one of these for their backyard and were able to lend me it while I was recovering. It can lean back or forwards or upright, the feet can lift up, and the part where you are seated sort of hangs down giving you that zero gravity effect! This turned out to be the spot I spent most of my time in. I would just place a couple pillows along the back for support and relax! I wasn't comfortable sitting in our plushy recliner because it leans back too far and our couches didn't provide enough support for my upper back so this was the seat for me!
Use a thermal cup with a bendy straw!-when you get thirsty while you're laying down, it will be very challenging to try to sit up every time you need a drink, so I recommend a cup with a bendy straw so you can keep laying down! You're also not going to want to keep having to refill your cup with cold water or ice, so the thermal cup will keep your water cold for a long time! I was lucky enough to get a really nice one from my hospital as a gift and I still use it every day!
Get off of Narcotics ASAP-while Narcotics can really make the pain go away, it's really best to take them less and less each day. 10 days should be the max! The first week I took them consistently about every 4 hours since that is when you'll be in the most pain, but afterwards I began taking them only twice a day and then eventually only right before bed. It's good to get off of them soon because they tend to cause constipation and you don't want to get addicted!
Don't get discouraged-everyone's recovery process is different. For some it takes much longer to get back on their feet and some are hitting the mall exactly 2 weeks later! Listen to what your doctor says are your restrictions and focus on getting better. Only you know how you're feeling and what you can handle.
Once you go see your doctor for your post-op appointments, they will gradually give you less and less restrictions. I was able to swim at about 4 weeks post-op and got to start driving around that time too. I started college exactly 6 weeks post, feeling the greatest I'd felt and was able to carry a backpack comfortably! As I'm writing this I am 2 months post-op, and my only restrictions are heavy lifting and strenuous exercise such as tumbling. I'm really really happy to say that my back looks great! The incision is healing up beautifully and I'm a whole Inch and a half taller. I also have a torso and all those abnormalities on my back are gone! I couldn't be happier about making the decision to have this surgery and I'm so excited to take on life with with my new straight spine!