I am eighteen years old and I’ve had two spinal fusion surgeries (cervical to be more specific). Often when people hear this they look at me in horror. How could someone so young have a neck surgery like that, let alone two of them?? And to that I reply, “You’re telling me.”
Long medical story short I have several severe musculoskeletal diseases, along with other conditions to add icing to the cake. To name a few of the conditions which affect me most: Klippel-Feil Syndrome, Ehlers Danlos, spinal stenosis, scoliosis, MRKH, hypertension. Due to my Klippel-Feil, scoliosis, and spinal stenosis I have a lot of issues with my spinal cord not having enough room. At the age of twelve I had my first cervical surgery. This surgery was urgent and done a month after school was out. I was losing feeling all throughout my right arm. Of course as a twelve year old I was petrified. I’d never had surgery this major before. I resided in a dark basement playing video games as the days crept closer. I remember sleeping down there some nights and crying because I was so scared. There wasn’t anything on the internet to help prepare me. I didn’t know a single thing to expect besides the horrific thought of metal settling into my bones.
Next thing I knew, I’m seventeen and it was time for my second and final cervical surgery. This time I was a bit more ready; I’d been through this before. Since I was still young at the time of my first surgery and still growing, they could only complete half of the fusion until further issues showed down the road. Beginning in August 2019, my spinal cord decided it was time to move on over but my bones obviously were not allowing this. So I found myself, yet again, in another surgery room preparing for my final cervical fusion.
This article is to share the truths behind spinal surgery and everything that follows with it- not just what the doctors tell you. I’ll also be giving tips to help for a wonderful recovery as well.
With this list keep in mind: everyone is different. So what worked for me may not work for you. Listen to your body and its unique needs!
- To begin, you will have to have a tube put in your throat. This is a very uncomfortable and honestly unsettling experience. The advice I have with this is if you already have limited motion in your neck ask your doctors what size breathing tube they’ll be using and how they plan to insert it. In my case, they used a toddler/infant sized breathing tube (since I couldn’t open my mouth wide or turn my neck). They will have you suck on a stick with numbing creme on it… not as tasty as it sounds ha! And once you are finished with the stick they will have you breath in numbing gas and this will ensure your entire mouth and inside of your esophagus is numb.
- You will have a catheter inserted for the first couple days after surgery. Not many issues come from this, but be prepared for potential burning. You will have to use a bedpan or walk to the restroom as alternatives- both are quite challenging tasks.
- Pillows. Pillows will be your new enemy. Here’s a link to the only pillow that hasn’t hurt me in over 8 years. The hardware will be very sensitive and you can have no incline with your neck. The thinner and softer, the better!
- Using the restroom will be challenging. You can consider looking into a toilet seat lift. In my personal experience they tend to make it more difficult because they don’t stay in place, but everyone is different!
- A shower chair is a MUST. Showers will make you so tired. Being able to sit and rest is argumentatively the best luxury of the day. I used this for a while after my second fusion.
Make sure to check if your insurance can cover the shower chair and toilet seat before purchasing!
- Before considering this surgery you must be honest with yourself with your activity capabilities. Your life is going to have to be put on pause for several months, and gradually you’ll be able to begin doing more. You cannot rush this process. Plan your surgery around your schedule and find the best couple months for you to pause from the rigorous demands of life. (Unless of course it is urgent- then do not hold off the surgery.)
- You are going to have to retrain your body functions. Your digestion, restroom, etc. During surgery they literally put your body on pause… they can’t have you urinating during surgery- or worse. It’s going to take time to get all your bodily functions working in harmony again… and when I say it’ll take time. I mean it’ll take time. Personally I had my surgery in March of 2019 and I couldn’t eat normally until the summertime. That was at least four to six months of retraining my stomach.
- Always self advocate. Doctors will only tell you what they’re mandatory to report. They cannot read your mind. Ask any and every question/concern you have. And if this all overwhelms you do not hesitate to bring a loved one with you. Spinal fusions, along with any surgery is a big decision. You deserve support.
- Always weigh the pros and cons of fusions and possible alternatives. Which do you feel will be best for YOU at the end of the day?
- It’ll take time to love the new you. Be gentle.
- Avoid car rides until sudden movement no longer hurts. If you cannot avoid them: pillows, blankets, and more pillows.
- It will take time to adjust to your new range of motion. A lot of time. Be patient and gentle. Be mindful of movements because you may have muscle spasms which can lead to jerking. These can be painful but they will go away with time.
- Do NOT overdo it. After a few weeks healing you may feel motivated to finally get back in shape, or back to your ideal health. This is wonderful and recommended, but do not be fooled by the sudden burst of energy. You still need to be gentle. You can cause damage to the hardware if you are not careful. Gentle yoga is wonderful to begin retraining the muscles and bodily functions. Thousands of videos are on YouTube but you can also check out mine 🙂
- You will be controlled by the weather: rain, temperature, humidity, etc. Sadly after my surgery in the spring it rained… a lot. Every time a big storm rolled in or the humidity was high my body surely felt it. Simple over the counter pain medicines, such as Aleve Back and Body, can help with these pains. Always check with doctors before taking a new medication after surgery- even over the counter.
- You need DEEP rest. Your entire body is in recovery. Not just the spot you had fusion. Don’t be afraid to hit that snooze button a couple times… or turn it off completely. Whatever you like 🙂
- Always drink lots and lots of fluids. No dark liquids. Beverages high in antioxidants and vitamins will help replenish your body tremendously. I drank V8 often after my surgery to help with stomach pain and Naked smoothies. Gentle drinks such as that help a lot. Don’t forget the best one out there. WATER!
- Although you will be very hungry once you get home and you’ll be tempted to eat everything… even the not so healthy things. I caution you to not overindulge. (Learn from my mistake.) Overindulging can lead to more stomach pains since using the restroom will be challenging still…
- Find things you enjoy doing so you can stay enthusiastic during recovery. Also try to keep things within reaching distance to avoid too much movement and discomfort.
- Slip on shoes and simple clothes will be very helpful. Bending over to tie your shoes will hurt for a while due to the blood rushes and muscle spasms. WARNING: once you begin to wear slip on shoes you’ll never want to go back.
- Always have someone to help you clean the pads on your stitches and if they get wet change them as soon as possible. (It will avoid infection and discomfort.)
- Be assertive with others about your social battery and your need to rest. Be honest with yourself as well.
- Remember to be patient after your surgery and be empathetic of other patience as well. Staff are doing their best to tend to everyone.
- They will not let you leave the hospital until you go number 2. (Do not lie about it either, learn from my mistake.)
- Do everything mindfully and slowly. As you’re healing your balance is going to be very off and your blood pressure is learning to regulate again. You will have A LOT of blood rushes. Simply breathe and take it slow… it’s really all you can do for them. During a blood rush do not hold your breath as you wince at pain- it only makes it worse. You must breathe.
- Remember there’s a difference between “uncomfortable” pain and “unbearable” pain. Always be honest when it comes to your medication and the amount you need. Try to take them with scarcity as you don’t want to get dependent on the strong post-surgery medications (of course everyone’s body is different so be mindful).
- Third day after surgery tends to be the roughest. I was on a breathing machine and unconscious for a day after my surgery on Monday. So late Tuesday/Wednesday I was able to become “active” again and this is when the bodily shock sets in.
- Cervical surgery is not a one and done deal. You must have some form of active lifestyle to follow afterwards (approved by your doctor of course).
- Of course, your mobility after surgery will determine your range of motion. Always be mindful of the exercises/stretches you’re doing. Listen to your body. You’re the one who truly knows what’s best for you.
- Your surgery’s estimated healing time is 1 year post surgery. This is when I’d say the hardware is mostly settled in as well as your muscles back to “normal”. After both of my neck surgery experiences, I felt “healed” before this 1 year mark. BUT just because you feel this way does not mean you should neglect aftercare, exercises, and safety.
- If you have a condition which affects skin healing and elasticity (such as Ehlers Danlos in my case) make sure to inform doctors and nurses before and after surgery. They will have to put in staples as well as stitches to ensure they heal correctly and do not tear out. During my first surgery a quarter sized hole opened at the bottom of my scar and the healing process of the scar was another 1-2 months, and we had to pack gauze until it healed from the inside out. Always be aware of the stitches, how they feel/look, etc. If anything seems off immediately go to your doctors to have them inspected.
- During my surgery they used a halo in order to hold my head/neck in perfect position for surgery. Due to the halo I had welts on my forehead as well as all 2 other places on my scalp. These welts will be painful and leave scars for a couple months after surgery. I recommend using oatmeal lotion as well as other sensitive products for skin care on them. NO extreme face washes. This is not a time to deeply clean, but a time be gentle and heal the skin. Using oatmeal lotion and oil I was able to keep the scar healthy and moisturized. Doing this made the healing time much faster as well as comfortable. If a healing scar is dry it’ll sting and itch very bad.
- How to care for the scar: I recommend oatmeal lotion as well as a simple oil. CAUTION: do not apply anything besides water to your scar until instructed by your doctor and it’s fully healed. If you neglect to wait for it to be completely healed and apply some sort of product or oil it will get infected. Infections are no bueno.
- If the surgery is on your skull/neck you’ll have to have your head shaved in certain places (all depending on your surgery). After surgery it’ll be a hard transition to learn to love this phase of yourself. There will be some hair loss for a bit due to the stitches, healing skin, etc. This will all end as you can groom yourself more. Remember: this will take time because you cannot get your wound wet for a bit after surgery… be patient and very gentle. Look for alternatives for hair if you must, but it truly doesn’t last that long. Hair grows back. What matters most is your health right now. I think it’s more worth it to find your confidence and own it than frantically searching for ways to hide your hair and bandaging. Avoid excessive manipulation of any sort.
- There will be many pre-surgery appointments: x-rays, collar fittings, MRI, vitamin checks, blood check, etc.
My experience: my doctor wanted me to wear a cervical brace several months before the neck surgery to ensure the fusion of my entire neck and skull would be the best solution. I wore it around 2 months before surgery and 3 months after. You must put into consideration the amount of time you will have to wear the cervical brace. I do not recommend having this surgery during the summertime months. The brace, bandaging, and stitches will be unbearably itchy and drive you insane. In my experience the total time you wear a brace ranges anywhere from 3-5 months. This truly depends on each person though. Be mindful and transparent with your doctors with instructions and any questions.
31. No more backpacks. Not a small one or a big one. It does suck but there are alternatives out there. They may not be the coolest or most appealing, but would you rather look cool or be in muscle burning pain? Senior year I finally worked up the courage to have a rolling backpack and I’m never going back! Also, fannies are coming back in style so don’t worry about how you’re going to carry all your stuff, ha ha!
- Last but not least, be gentle and listen to your body. Don’t just pay attention to the pain but to your emotions and needs as well. You are putting your body through a lot. You have the right to cry if you need. You have the right to have the entire day in your bed. Hell, you can take the entire week. Our bodies work every single day to keep us alive through tremendous odds, so just remember to not be so rough on yourself.
Don’t be afraid to rock that hospital gown and brace!
Email me or send a message on Instagram if you’d like to hear more, or simply want to talk! If you need advice or information I’m here for you 🙂