Many people wonder what life looks like years after scoliosis surgery. While spinal fusion can successfully correct spinal curves, some patients experience changes in their spine over time. In this personal story, Summer Stevens shares her journey from scoliosis diagnosis and surgery at age 13 to navigating life with spinal fusion more than 15 years later.
My Scoliosis Diagnosis at Age 8
When I was diagnosed with scoliosis at age 8, I was never told how much it would impact my life, but alas, here we are!
My scoliosis was first caught at a school screening in elementary school. I had x-rays taken and followed up with a pediatric surgeon where my parents and I learned that I had a single scoliosis curve (idiopathic, meaning there was no known cause). This came as a total surprise to us. When I was first diagnosed, my curve was about 30 degrees. By the time I was 10, a second curve developed, creating an “S” shape. At that point, my surgeon prescribed a brace to prevent the curve from progressing further.
Wearing a Scoliosis Brace as a Kid
As many readers can relate to, I was wrapped with cast material, then had multiple people push on my body to get a good correction. The only part about this that I enjoyed was picking out a design (I chose purple with butterflies)! I was made to wear a brace for about 20 hours a day. This was super tough for me, especially living in south Florida where it’s always hot!
Despite our best efforts, the curve continued to progress. When I was age 13, the curves had reached 50 degrees and 52 degrees, and my surgeon told us that surgery was the only option to correct the scoliosis and prevent it from impacting important organs. I did not have any pain from my scoliosis at this time, and I was not too nervous about the surgery.
Scoliosis Surgery at Age 13
I had surgery in 2010 when I was 13 years old. The surgery went very well, achieving a great correction and even giving me 2.5 inches in height! My spine is fused from T3 to L4. The recovery was pretty rough and I needed a lot of help from my parents for a while. The pain was manageable with the medications I was given. I stayed in the hospital for 5 days and stayed home from school for about 6 weeks. I remember being really bored, doing lots of puzzles, and watching Little House on the Prairie during my recovery!
After I recovered, I went back to school and picked up my usual routine. The only thing that was different was my flexibility - I can bend from my hips and my neck, but not from my waist.
Life After Spinal Fusion
I graduated high school in 2015 and college in 2019, earning my master’s degree in 2021. Through high school and college, I played lacrosse, swam, and did yoga. In 2021, the back pain below my fusion really started to ramp up. After almost 10 years without seeing an orthopedic doctor, I had imaging done that revealed mild arthritis and slight disc flattening at L4/L5. My doctor explained it to me like this:
When you have a long fusion, a huge amount of stress, pressure, and wear and tear occurs to the unfused portion above and below the fusion. After years of this pressure, the discs and bones in the unfused portion start to deteriorate from the excess strain. This is called “Adjacent Segment Disease” (ASD), and this is was what was happening to my spine at L4/L5.
So, I continued to push forward, as the pain wasn’t too severe. My dream of being a teacher was finally a reality, and I earned my second master’s degree in Visual Impairment in 2022.
When Adjacent Segment Disease Started Affecting Daily Life
In 2024, the back pain below the fusion started to affect my daily life, and I could no longer ignore it. New nerve symptoms like shooting pains in my pelvis, legs, toes, twitching, and more popped up. Sitting became extremely uncomfortable and painful, and I wasn’t able to walk far or exercise at all due to the pain. New imaging showed that the ASD had worsened- severe arthritis, severe disc bulges, severe spinal stenosis (narrowing of the spinal canal), shifted vertebrae, and atrophy of my spinal and core muscles.
This was when I realized I needed a mobility aid, so I bought forearm crutches. The crutches relieved the pressure from that problematic area and helped make walking and standing more comfortable. Using a mobility aid was an adjustment for me mentally, but I quickly realized the benefit outweighed my embarrassment. Though I was still in a lot of pain, they helped me quite a bit.
Discovering New Ways to Stay Mobile
In 2025, I finally found an amazing Primary Care doctor and an Interventional Pain Management doctor. They helped me access new medications that are appropriate to my pain level, a custom wheelchair, and injections/nerve ablations which have all helped my pain significantly.
"Why get a wheelchair if you can walk?” you may ask. Well, my priority is to make myself as comfortable and pain free as possible so I can enjoy my life. Standing and walking for a prolonged time/distance continues to cause severe pain, even with crutches. Scoliosis affects our anatomy: my back is very flat, I don’t have a lumbar curve, my hips and shoulders are not balanced, and I have a large numb zone on my back that cannot tolerate pressure. With the help of a local wheelchair specialist, I got a custom ultralight manual wheelchair through my insurance!
And as much as I thought the crutches helped…. Boy, the wheelchair is AMAZING. It’s custom made for me. It stabilizes my hips, relieves pressure from my spine and decompresses my herniated discs. Getting over the stigma of using a wheelchair is not easy and is still a work in progress, but at the end of the day, I prioritize my comfort over others’ perceptions.
Looking Ahead: Considering Revision Surgery
This year, I’ve been in more pain than any other year. It’s often all I can think about. I’ve been “toughing it out” for a very long time, and I’m now being proactive in advocating for what I need. Pain management and mobility aids help me cope with the pain, but there is still the issue of the physical deterioration- and sadly, that will not go away on its own. Adjacent Segment Disease is an unfortunate long-term side effect that many people have after being fused for 10+ years, and the solution is usually an additional surgery to extend the fusion to the pelvis.
In 2027, I am planning to have the revision surgery. This will eliminate the stenosis and stabilize the spine, which is very much needed. Though I will lose some flexibility, the stability and pain reduction will be positive changes and hopefully lead to more pain free years.
Things go sideways with bodies sometimes. What started as scoliosis has landed me here, and I’m making do with the only body I have!
Frequently Asked Questions
How common is adjacent segment disease (ASD)?
Symptomatic adjacent segment disease (ASD) after scoliosis spinal fusion occurs in approximately 18-20% of patients at 9-year follow-up [1].
Can ASD be prevented?
While patients cannot completely control whether adjacent segment disease (ASD) develops, there are a few things that may help lower the risk. Maintaining a healthy weight and following a rehabilitation or physical therapy program after surgery are two factors that patients can influence that may support spine health.
Other factors that affect the risk of ASD are not within a person’s control. These include age (the risk is higher for adults over 60), genetics, existing disc wear before surgery, and the natural alignment of a person’s spine [2-4].
It’s a good idea to ask your doctor how they plan to reduce the chance of ASD when discussing surgery. If you’re unsure or want more confidence in your plan, getting a second opinion is always an option.
Can people with spinal fusion still stay active?
Yes! People should remain physically active and exercise after fully recovering from spinal fusion surgery for scoliosis. Most can safely return to sports within a year, with individualized guidance based on surgical and personal factors. Participation in physical activity post-surgery is associated with improved physical, social, and emotional well-being [5]. Talk with your healthcare team to determine the best way to stay active.
References:
1. Kasliwal MK, Shaffrey CI, Lenke LG, et al. Frequency, risk factors, and treatment of distal adjacent segment pathology after long thoracolumbar fusion: a systematic review. Spine. 2012.
2. Huang X, Cai Y, Chen K, et al. Risk factors and treatment strategies for adjacent segment disease following spinal fusion: review. Mol Med Rep. 2025.
3. Lau KKL, Samartzis D, To NSC, et al. Demographic, surgical, and radiographic risk factors for symptomatic adjacent segment disease after lumbar fusion: a systematic review and meta-analysis. J Bone Joint Surg Am. 2021.
4. Hashimoto K, Aizawa T, Kanno H, Itoi E. Adjacent segment degeneration after fusion spinal surgery: a systematic review. Int Orthop. 2019.
5. Willson LR, Klootwyk M, Rogers LG, Shearer K, Southon S, Sasseville C. Timelines for returning to physical activity following pediatric spinal surgery: recommendations from the literature and preliminary data. BMC Res Notes. 2021 Apr 29;14(1):159. doi: 10.1186/s13104-021-05571-2. PMID: 33926530; PMCID: PMC8082610.
