My one year “spineaversary” was on May 26, 2017, and I started working on this post a couple of days beforehand. I’m not exactly sure why it’s taken me so long to write this – maybe because I still have more questions than answers? Regardless – I wrote this post especially for anyone who is debating whether to have back surgery, is awaiting their surgery date, or is in their first year of spinal fusion surgery recovery. It isn’t all puppies & rainbows, but the truth rarely is. xo – Sharon
It’s me – er, you. It’s been about one year since our spinal fusion, and I have good news for you: We survived!
You really have no clue what you’re getting yourself into, but that’s not necessarily a bad thing. Sure, doing a bit more research beforehand would’ve been wise. But honestly, I don’t think there’s much more you could’ve done to prepare yourself for the weeks and months ahead – at least not without scaring yourself half to death.
But since we’re having this talk, there are a few things I want to tell you before they roll you off into the OR.
1. From here on out, you will have to be your own advocate – not just in the hospital, but all throughout your recovery. The sooner you learn this, the better. If you need more pain meds, ask for them. If you don’t ask, the nurses will assume that your pain is under control. Now is not the time to be shy. Press the damn call button.
2. You are allergic to Steri-Strips. Tell your surgeon, and save yourself a couple of weeks of unbearable itching.
3. I know your surgeon said he wants you up & walking ASAP, and you will be. But keep your expectations realistic. For the next week or so, the only walking you’ll be able to do is to & from the bathroom. It’ll be another week before you’re able to walk downstairs. Listen to your body and take it slow.
4. Speaking of slow…recovering from a spinal fusion is a long, slow process – much longer and much slower than you’re expecting it to be. Your surgeon told you that it’ll take about 6 weeks to recover. And while you’ll be through the worst of it after 6 weeks, it’s going to be more like 6 months until you feel normal again.
5. Don’t let #4 scare you. Recovery does not equal inactivity or isolation. In a few weeks, you’ll be up & about, taking the kids to the beach and the pool. By mid-summer, you’ll be well enough for a 4-hour road trip. In the fall, you’ll travel to Washington, DC with your family. And by Thanksgiving, you’ll be walking around Disney World like a boss.
6. When you get home from the hospital, you’ll want to have a shower chair, a grabber, and a couple of good ice packs (for when your ice therapy machine from the hospital quits working). Also make sure you have a TENS unit ready to use (and with replacement pads ordered) on day one.
7. You’re going to need help, so get over yourself and ask for it. Your friends won’t say no. In fact, some will surprise you with their generosity. (If I told you who, you wouldn’t believe me.) The messages, the care packages, the flowers, the food, the favors – these gestures will mean so much. And they’ll change you. They’ll inspire you to be a better friend, to give of yourself more generously, and to step up to help, even (or especially) when nothing has been asked of you.
8. Since we’re on the topic of needing help, you are going to need Vic’s help way more than either of you anticipate. You’ve told him that you won’t need him to stay in the hospital with you, but you’re wrong. Luckily, he’ll ignore you. You’ll be especially glad of this tomorrow night when you get all tangled up and nearly rip out your IV while trying to use the bathroom in the middle of the night.
Once you get home, he’ll be on round-the-clock caretaker duty. He’ll bring your meals to you in bed. He’ll help you in & out of the shower. He’ll pick up your medications. He’ll put your socks on for you. But it won’t be all work & no play. He’ll move a TV into the bedroom (for the first time in 13 years!), and you’ll spend most evenings eating dinner & watching House of Cards in bed. Despite the circumstances, it’ll be a special time for both of you.
9. When it’s time for your 2 week follow-up appointment, you’ll want to leave your walker at home. Don’t do it! You’re going to do a lot more walking that day than you think. Put aside your vanity and bring it.
10. Speaking of vanity? Take more pictures. It’ll be a while before you feel up to writing, but eventually you’ll want to share your experience, and you’ll get tired of sharing the same 3 photos over & over. No one expects you to look good right now.
11. At your 3 month follow-up appointment, you’ll be told that physical therapy is optional. THIS IS BS. You need to begin PT as soon as you’re cleared for it. Please trust me on this.
12. As soon as you get home from the hospital, log on to Facebook and search for “Spondylolisthesis & Retrolisthesis Support” and request to join THIS group. This will be your #1 source of information for the next 6 months.
I know you have a lot of questions about what life will be like post-op. Will you be able to run? Practice yoga? Take a dance class? Will your scars be huge? Will you be able to feel the hardware in your back? Will the pain in your hip go away? Will you still have back pain?
And look, I get it (obviously). But here’s the thing. The answers to those (very valid) questions aren’t important right now. What you need to know TODAY, the day of your surgery, is this:
You are doing the right thing.
You will have less pain after surgery than you do right now (not today, of course, but in a few weeks).
Your quality of life will improve after surgery.
You will not regret having this surgery. Even in those fleeting dark moments, you will know in your heart of hearts that you made the right choice.
You will not only survive, but you will thrive. You will dig deep and find courage that you never knew existed. You will learn that you have a much higher tolerance for pain & discomfort than you think. You will find support & love in unexpected places. You will persevere, and you will inspire others to do the same.
So lay back and relax. I know it’s scary, but try not to worry. Because trust me, YOU’VE GOT THIS.
Catch you on the flip side.
Jim C says
Hi Sharon, a very encouraging and inspiring message, thanks. I’m curious because it seems like you had a relatively quick recovery with early visits to the pool, the beach and Disney. Would you mind sharing the levels that you had fused? In less than 2 weeks Im going in for my second fusion because the first one (T10-L5, in 2015) has given me what they call “flat back syndrome” over the past several years. This time I’ll be fused from T4 down to my pelvis, with the expectation of a one year recovery. So I don’t see myself attempting short trips to the pool or beach the way you were blessed to do. This is why I inquire about how may levels and which region of your spine you had fused. Even after already going through it 8 years ago, I’m getting nervous as the day approaches. Stay healthy!
Sharon Wilhelm says
Hi Jim! I’m fused from L4-S1. Just two levels, so a relatively small portion of my spine compared to yours. Best wishes for a successful & speedy surgery and recovery.
Lynette Mitchell says
I am a 53yr old bed side nurse of 31yrs. I had fusion of my L4 L5 in November. I am currently 11 weeks post surgery. I took 3 months off of work because that is what my neurosurgeon told me. I am scheduled to go back in 2 weeks and I am very anxious about doing so. I work 12hr shifts. I have been trying to do things like normal. Dishes and laundry that kill me. I have walked around walmart and found out I hurt a lot that night and the next day. My pain is a lot better than before surgery only needing tylenol and gabapentin. I see the Dr. in 2 weeks and will discuss my return to work then. I wish I didn’t need to work.
I had a L4/L5 fusion in May of 2019 (4 screws, 2 rods, artificial disc and a metal cage on my lil spine) after suffering for over 2 years from a accident. I am glad that you are okay, Me I am not doing well at all, the pain is constant 24/7 for three going on 4 years in March 2021. I am tired of all the pills that don’t work, hence me being up since 11/5/2020. All I have now are prayers for a miracle healing. Because the Dr. said I would be fine twice, 1st surgery & 2nd not really 3 months apart. People Sorry for the Doom & Gloom, but I was the one who’s pain stayed.
45years old Man
I had my l4 l5 fusion almost 6 months ago.
I am feeling great and walking for one hour each day. 30 minutes each
SO dear Sharon is it normal that still I have numbness and weakness in right leg.
And pain starts when I walk for 30 minutes.
I mean after 30 minutes walk then starts the weakness in right leg and pain in foot.
Going up and down the stairs per day how many times I should use and is it good for strenghting the muscles.
Chris Pisarcik says
Just to add, I was told by other Drs not to have surgery. I had intractable pain for 7 years. Did every except pain meds except Motrin. Found a terrific neurosurgeon in Philadelphia. My only regret is I waited so long to have, Be prepared recovery is very long, weak, tired, waiting to feel brand new.
Chris Pisarcik says
Hello Sharon , I have been reading your posts many times wanting to reach out. I am 15 months post L4,5 S1 fusion. I have a spine full of arthritis . Yes recovery was more mental than physical, kept waiting to feel better. Turned the corner at 5 months. I’m 64 , healthy, was an avid swimmer. I’ve had a few flare ups. They last about 10 days. I was at 9 months 80- better most of the time. I was so glad I had the surgery. Just last month seemed to be another flare up, was walking 2 miles a day waiting for pool to open, did you ever have flare ups? Pain is a tad less 30 days later but not my wonderful post op self. Whenever I try to be a little active…I get pain . Repeat MRI shows no changes .i realize 18 months to total fusion but this is becoming daunting. I’m just wondering about your thoughts on flare ups, you seem to be doing so well with staying active. You are an inspiration!
I am almost a year post surgery and I loved reading your post. It is good to see someone write all the thoughts that I’ve been thinking to myself. Its been more emotional for me than I thought and seeing the amazing things I’ve been able to do after surgery still amazes me and humbles me so much. Thank you for your post!
Sharon Wilhelm says
Hi Rebecca, that’s great to hear! 🙂 I’ve continued to improve (slowly) since that one year mark. I’ll be 4 years post-op next month, and some days I don’t even really think about my surgery. My back isn’t perfect, but things are 1000 x better than they would have been if I didn’t have surgery. I’m so grateful. Stay healthy and keep in touch! 🙂
Deborah Chaze says
So grateful to find this positive post.
Two spinal fusions. Most recent 5 weeks ago.
Question… Fatigue and legs like rubber. Using cane and walker.
Was very active hiker… now walking across kitchen is a challenge.
Your positive post has given me great comfort.
When did you walk without aid?
Nerves take so long to heal I have been told.
12 weeks of PT…. and hope by Mid summer…. I can see progress.
Thank you again for your positive words.
Hi Deborah! Sorry for my slow reply. From what I remember (memory is fuzzy) I only used the walker for maybe the first couple of weeks. But honestly I didn’t do much walking. Back and forth to the bathroom, up and down the stairs a couple times a day. I was still spending quite a lot of time on my back in bed at 5-6 weeks. I think 6 weeks is around the time when I started to see progress.
Oh, and fatigue was ridiculous. Even the smallest bit of exertion left me completely exhausted. Unfortunately that lasted for quite a while. I took a lot of naps. It got better over time though. How did you come to have two fusions? Was your first unsuccessful, or did you need additional levels?
I am grateful for your reply and that you continue to give support to others…. now that your recovery is complete.
I had ( have) scoliosis as a child, hence the first spinal fusion at age 17. Many years later I have spinal stenosis., requiring a another fusion to lower spine….. The first 6 weeks appt with Surgeon was recent. I wanted to be walking now unaided….
… but this is not realistic. As you stated in your blog… 6 months… one year are big milestones…. This positive and informative site has given me and many others encouragement and … the Can Do Spirit….. Will continue to fight the fatigue… but feel relieved this is “normal”……
Hi Sharon – Thank you…you had me at ‘You are doing the right thing’!! In five days I will be having my back fusion surgery T12 down to L5. Since I’ve known about the surgery (since Feb 2017), my mind has been going back and forth with so many flippin thoughts. Do I? Do I not? What will be my new normal? Will I be able to touch my toes? and so on. And to think, all I was searching for was to see if blogging about my upcoming adventure was a good idea lol. Up until now, I hadn’t found anyone who talked about their experience. Actually, I was afraid of looking too hard, I wasn’t sure I really wanted to know the outcome but I’m glad I found you :). You’ve put my mind at ease a bit…knowing full well that it won’t be easy and a long recovery but the outcome seems a little bit brighter now :). Hoping that your recovery continues to go well and I will keep checking in 🙂 Thank you again! Chantal xo
Hi Chantal! I’m sorry it’s taken me a few days to reply – I’ve been on vacation. (!!!!) Your message made my day – I’m so glad I could help even a little. Try to stay off the internet after surgery too – I found myself laying awake at night when I couldn’t sleep, visiting forums that scared me half to death. You’ll get through it -that’s the most important thing right now. I hope you start blogging about your experience, and if you do please let me know!!! I’ve found quite a few of us on Instagram, so if you need some profiles to motivate & inspire you, I’m happy to share. Please do stay in touch. I’ll be thinking about you. xoxo
It is crazy that it has been a year already (well pasted it now). I remember first talking to you after you had it done. I am 18 months out now. I have shared as much about my experience as I have wanted too. I really need to get on the ball and do it. I hope things are looking up for you. Things here have been hard so far this year. In Jan. my meds for my ra stopped working and it took several months to get them to believe me that my pain was unbearable again despite physical therapy. I have regressed on being able to do much exercise and it bothers me. It is part of the journey I suppose.
You are right, the first 2 weeks was the worst but it took at least 6 weeks to get pasted the crazy pain of sitting up for several hours. I’m thankful that I had the surgery but it has been a test of patience. I remember doing laps around the house just to get my walking in. My husband wanted me to do more but I always tried to listen to my body as much as possible. I still have to do that now.
Im hoping to be able to start walking again for exercise. We shall see.
You are an inspiration. I am not a runner but I do like yoga. Can’t fathom getting on the floor now.
Thanks, Rose. How are you doing?