When and why should you seriously consider encouraging your teenager or young adult to have their scoliosis fixed surgically? Two patients I saw this week have interesting stories that might help.
On Wednesday this week, in between surgeries, I saw a Karen, very nice 42 yo athletic young lady who had a history of adolescent idiopathic scoliosis treated conservatively in a Boston Brace at CHOP, Children’s Hospital of Pennsylvania. As shown on the chart on the left, her curves measured 37 for her right thoracic curve, and 23 degrees for her lower curve at the time she hit skeletal maturity. That would deem her a “success” for scoliosis bracing and conservative therapy. But, to be on the safe side, she actually went back to CHOP to get remeasured as an adult (a rare thing), and as shown on the chart, her upper curve progressed up to 43 degrees and the lumbar curve crept up to 25 degrees in 1994 and kept climbing to 28 degrees in 1996, just 2 years later. She was still asymptomatic at that point.
Despite this curve progression, aside from a small change in her posture, she was asymptomatic…. until about three years ago, when she began to have a dull ache in her left lower back, right near the “45.6/32.8” measurement is at her thoracolumbar junction. Her upper curve indeed has now progressed up to 46 degrees, and her lumbar curve has progressed even more rapidly to 33 degrees — up another 5 degrees since 1996.
She is very fit, and is in the midst of conservative therapy for the pain aspect of her scoliosis. While her curve is still not dramatically big, it is now becoming symptomatic, affecting her quality of life, and now is also affecting her standing posture. Even if your curve was less than 40 degrees at skeletal maturity, the curves can continue to progress in adulthood, due to the asymmetric loading of the discs leading do accelerated disc degeneration and collapse, which leads to further curve progression and further disc load asymmetry –> further disc cartilage damage –> further collapse. A vicious cycle that can lead to accelerated collapse especially in cases where there is a large trunk asymmetry as a result of the scoliosis.
This stresses the importance to keep an eye on your scoliosis even if you were told not to worry about your scoliosis because you were “done growing.” Adults should be checked every year through age 25 and after each pregnancy, and every 5 years after age 25. Kyphosis patients should also be checked as well. It also emphasizes the possible large benefit of fixing scoliosis at a younger age with smaller curves to help center the loads over the lumbar discs and prevent later disc collapse and disability. We have shared on previous blogs what severe disc collapse can look like, including the 53 yo gentleman I saw from Mississippi years ago who had a huge thoracic scoliosis, but had all of his pain in his low back, where all of his lumbar discs had worn out prematurely, forcing him to give up his career on the riverboat and seek disability. “A stitch in time can save 9” — in terms of being able to fix the scoliosis with a smaller less invasive surgery if fixed sooner before additional spine levels wear out requiring additional fusion levels, possibly even to the pelvis.
So for Karen, even though her curve might not seem like it is progressing very rapidly, it is progressing at a degree or 2 per year, especially in the lumbar area. The lumbar area typically does tend to progress more rapidly, since it does not have the rib cage support. It also is the area that causes more pain, and can even cause spinal stenosis as the body reacts to the disc collapse, causing nerve root impingement with disc herniations in some patients.
So what should Karen do now? She’s still very functional, but definitely having pain every day. How far will this curve progress? Well, even if the curve stayed at current rate of progression, her lower curve will be getting into the 50’s and then 60’s by the time she gets to retirement age. She’ll be at least a couple inches shorter by then with 2 big humps on her back, and likely a lot of pain. At that point, she’ll have more issues with osteoporosis, and will have more surgical risk, and less years to enjoy her improved posture. The curves also get stiffer as you get older, making it more difficult, if not impossible to get as good a correction that you can get in the younger adult or adolescent.
The problem that Karen and a lot of our adult scoliosis patients face however, is that life gets more complex as you get older — you’ve got kids to raise, jobs to go to, and possibly aging parents to care for as well. That’s why many patients like Karen will tell you that she wishes she had her curve fixed as an adolescent or young adult — life is less complex, and you prevent the risk of this degenerative collapse which can really affect quality of life down the line. Scoliosis in some cases can shorten someone’s life when the decreased vital capacity of the scoliosis combines with aging decreases in lung capacity and lung disease. However, the much more common issue for adult patients with scoliosis is not LIFE, but QUALITY OF LIFE, and concerns about FUTURE QUALITY OF LIFE.
Unlike CHOP, Boston Children’s where I trained, and other pediatric orthopedic centers around the country, Hey Clinic routinely sees the full age spectrum of scoliosis, from young kids with EOS and congenital scoliosis, through many teens with AIS, and then young adult, middle age, and older adults with spinal deformities. I have learned a ton over the past 16 years of practice caring for this wide age spectrum, where the older patients teach me things I can share with the younger ones, almost like a time traveller who can help you see what life might be like in the future having gotten to know many people who have already been there ahead of you!
As for Karen, she’s going to continue to work on her physical therapy, and exercise program, take her NSAID’s and track her pain and quality of life. We explained to her what the surgical option would involve, and when she’s had a chance to talk it over with her husband a bit will come back to see us with him to discuss a surgical correction to her deformity as a way of improving her current quality of life and posture, but more importantly maintain this quality of life and posture for the next 50+ years — worthwhile investment to consider.
STORY #2 AMANDA
Today I saw a 29 yo young lady named Amanda, who just had her third child 4 months ago. She was diagnosed with scoliosis as a teenager, and was treated successfully conservatively… sort of. She had a curve in the 30’s and was prescribed a Boston Brace, which she wore for about a week… maybe less, then did what many teenagers do: refuse to wear it. This is why it makes sense to sometimes get a second opinion about your adolescent’s scoliosis bracing, and engage in a very important dialogue with your teen before making a 4 year, 18 hour per day commitment for your teen who then ends up being “non-compliant.”
In any case, Amanda’s curve was around 40 when she finished growing, and she did pretty well through her teenage years. She had some back pain, but it wasn’t bad. She got married, and had 2 children with some back pain during pregnancy, but not too bad. However, 2 months after the delivery of her third child, she had a severe stabbing pain in her low back which literally caused her to be unable to move for several hours, and then kept her on almost complete bedrest for about a week. Scoliosis X-Rays now show that her curves have progressed into the 50’s, and with significantly increased rotation and trunk shift which greatly affects her standing posture. We’ve discussed in previous blogs that pregnancy can lead to curve progression in some patients due to the increased weight and hormonal “relaxins.” Amanda is trying conservative therapy for the pain, but now is really worried about the future, and when this next bout of severe pain might strike. Let’s face it: It isn’t exactly a convenient time to have scoliosis surgery when you have three small children!
Amanda’s mom was there, who said it was ok to share this picture with her sweatshirt that said: “Grandkids: the Greatest Gift of All.” Amanda’s mom is willing to help out for the 4-6 weeks Amanda will need to recover from her scoliosis surgery.
Amanda also from her perpective would encourage her younger scoliosis friends to consider earlier surgery before life gets more complex, including having kids.
Dr. Lloyd Hey
Hey Clinic for Scoliosis and Spine Surgery
http://www.heyclinic.com