HDYDI: Survive Scoliosis Surgery
If you’ve known me for a while (or if you knew me about six years ago), then you know that I underwent major back surgery for my scoliosis. I’m officially two inches taller because of that surgery, but it didn’t come easy. Scoliosis is the lateral curve of the spine and while I now have 24 screws and two titanium rods in my back, I will always have a curve. It’s significantly better than what it was – I went from 65 degrees to 14.
A few weeks ago, my neighbor’s mom experienced the same surgery and it reminded me of just how much a major surgery kicks you in the _ _ _. These are a few things I learned along the way and perhaps they’ll help you or someone you know.
{Disclaimer: I am NOT a medical professional, but I’m certainly opinionated enough to be one. All medical questions should be directed to your licensed physician.}
1. Choose a doctor you love. Granted, this comes before the surgery, but it is so, so, so important. You don’t have to love his/her bedside manner, but you darn well better trust and respect that surgeon. They are operating on your spine, people. That is nothing to take lightly. Dr. G hung the moon in my book. He performed my surgery in 2006 and did an amazing job. He continues to be one of my favorite doctors.
2. Stay on top of your pain meds. Hey, we all try to be the hero. I know I did. My excuse was “I’ve given birth to three babies, I don’t need to take that much hydrocodone.” And then I started sounding delusional and crying out in pain. Here’s the thing, unless you stay on top of your pain, you cannot get better because you’re constantly battling feeling crummy and not wanting to get up and moving. You ride the uncertain wave of pain ups and downs.
Then, you get depressed and cry in a dark corner. It’s ugly. With consistent pain management (mine was pain pills every four hours and muscle relaxers every six), I was able to maintain a baseline. That allowed me to know when to push a little harder or hold back. Otherwise, my day revolved around how much I hurt rather than how much progress I was making.
3. Get to walking. My doctor told me that was the quickest way to recovery; he was right. I bought a new pair of shoes before the surgery and did a little walking in them. The week after surgery, I could only walk from the back of the house to the front. Two weeks later, I could walk around the block, a month later I was walking a mile and two months later I was walking four miles a day. Don’t get me wrong, it hurt like hell x infinity. I was in serious pain. Eating hurt. Sitting hurt. Everything hurt. But, I kept taking the pain meds and kept walking. I wanted so badly to hold my children and get back to being a mom that I was willing to do most anything.
4. Know that you’re going to have days that are dark and ugly. When I had full-time help, it was easier to cope. I had smiling, happy, helpful people around to keep me focused and motivated. When they all went home and I was alone with the kids while my husband was at work, that’s when reality took a comfortable seat on my living room couch. I started to wonder if I was ever going to feel like myself again. I did, but boy did I cry some major tears to get there.
5. The first six months are hard physically, the next six months are hard emotionally. That’s just the way it is.
6. Trust your instinct. You know when you need to push harder and when you need to ease up. When you don’t, call the doctor and ask for advice. I had mine on speed dial.
7. Set small goals so you can see improvement. In the early weeks, it was just about survival. But, around week four, I decided to start setting some small goals. I was taking two pain pills every four hours. I decided to see if I could manage 1.5 pills every four hours. Lo and behold, after a week, I could. I took baby steps, but seeing improvement helped keep me focused on the prize: recovery.
8. Go to physical therapy. You don’t have to like it, but go. Personally, I hated going. You can ask my husband, I cried before and after every session. Those PTs were just downright mean. Well, they probably weren’t that mean, but they definitely challenged me. Their goal was to strengthen the muscles I had, retrain the ones that were moved and kick tail on the ones that had attitude. After two months of PT, I was able to see real progress. Just in time for me to see the positive sign on the pregnancy test.
9. Yep, I got pregnant eight months after surgery with my fourth child. And, two years later I gave birth to my fifth. Both are proof that life doesn’t end with scoliosis surgery. Just make sure you ask your spine surgeon if you can get the epidural. For me, that was a deal breaker. He said “yes” to the epidural and I said, “When can we do the surgery?”
10. Today, I run, workout, play with the kids and do all the things I loved (and more) with little to no thought about my back surgery. Yes, I still deal with muscle spasms and some minor pain, but it is typically corrected with exercise, stretching, a good night’s rest and massage. If scoliosis surgery is in your future, don’t let the fear of the knife keep you from living your new life. It certainly changed mine, for the better.
Before & After
These are all great tips! I had scoliosis surgery when I was fourteen, and so did my little sister. One thing I will say is that if you are considering this surgery for a minor child, think about it long and hard. I wouldn’t recommend doing it unless it is absolutely medically necessary (i.e. compromising organ or lung function, or causing extreme pain). My parents had us do it well before it was truly necessary, to keep it from getting worse, and we have both had many years of lingering back pain that we didn’t have before surgery, and likely could have postponed for many years. So always ask if it is absolutely medically necessary, and if it can be postponed. If they say it needs to be done, get a second opinion for confirmation. Major surgeries have major risks, and should never be done without serious consideration.
Stacy, I had no idea! And, yes, a big second on the waiting. I wore a back brace for 5.5 years in middle and high school. Then, was brace free for nearly 15 years before doing the surgery. It wasn’t something I tread into lightly, but I did learn one important lesson: choose a spine specialist, one who is fellowship trained in scoliosis, as your doctor. Orthopaedic surgeons are wonderful, but when it comes to the spine, see the specialist.
This has inspired me, but I am alone and scared. I never had scoliosis and kyphosis until I was in my fifties! Mine will be cut open front and back – 8 week recovery at a facility since I won’t be able to go home … I am tough even at my older age, but scared. Cleveland Clinic? New York Presbyterian?
Sharon, it is a tough diagnosis! I had my surgery in Austin, Texas, so I’m not much help on those two facilities. I wish you the best on your surgery.
I love finding other adults that have had this surgery. Not that I wish it on anyone but there is so little out there in regards to recovery from and adult perspective. I had my surgery (14 levels) second fusion 9 weeks ago. Some days are so HARD and others I can’t believe how far I have come. Obviously since I stumbled across this blog I am having a hard day.
Thanks for sharing and I actually started a blog to right before surgery if you’re interested : http://lifeatthetopofthehill.blogspot.com/2016/09/waiting-is-not-my-strong-suit.html?spref=fb
Hey the hard days happen. So glad you found a kindred spirit!
I am looking at scoliosis surgery in the near future, at the age of 57. I have become so rotated and collapsed that I can hardly stand up. I can’t sit for any length of time.
I got diagnosed at the age of 12. At that time they told me I did not need treatment and this was nothing to worry about. Not really what happened.
I am a physician, though now disabled, and I am scared to death because I know Every. Single. Thing. that could go wrong.
Thanks for the heads up on what to expect from your point of view. I need to get through this so that I can help my three children, all grown now, but suffering from their own scoliosis.
Blessings to you.
Blessings to you as you navigate surgery in your 50s. I pray you find a surgeon you trust and love, I think that makes all the difference.
Hello everyone. Fusion sister here too…had my first fusion in 2000, I was 44 I think. LOL I got through it it was rough. They cut me from the middle of my shoulders down over to the side and to my naval. Not to mention the 6″ cut on my hip to scrape bone. It was a very rough start but after 3 months went back to work, & had a good 10 yrs. Then in 2012 they fused me further down. I am now fused T10 to the S1. It did not fuse, I heard the rods break, while scrubbing the floor, dumb dumb…replaced in 2013. I believe I would not walking had it not been for my surgeries but its painful everyday. I had to quit working, the most painful thing is loosing friends, or having freinds say, you need to get out ore, you need to exercise, you need to gt some PT..they have no idea..