22 Things I Learned About the World of Scoliosis and Fusion in 2021
This is Part 32 of a serial blog originally titled 'Martha Carter's Healing Journey'. Curious about the earlier posts? To start from the beginning, read Part 1.
***
Thanks to the many online connections throughout this past year, including hosting a monthly Fusion Support Group, I have had the incredible opportunity to talk about scoliosis more than usual, and with a larger (and growing) community from around the world than ever before.
So, to bring in this New Year, I thought I would share some of my new insights and lessons right here... in point form, and in no particular order!
1. Scoliosis is a life-long condition that affects the whole body, mind and soul. It is essential to become friends with it.
2. Most people with scoliosis struggle with discomfort every day, especially as they grow older. Sometimes this discomfort is as much emotional as physical. It takes a lot of energy to stand up against ‘the curve’ and counteract ‘the twist’.
3. Considering many are diagnosed as teenagers, it is very common for folks to not talk about their ‘back condition’ with anyone, as “nobody else really understands”. Joining a support group is often the first time people are able share with others who have experienced the same or similar journey - and this is always a good thing!
LINK: Scoliosis Support Groups
4. Scoliosis Fusion Surgeries started in the 1960’s in the US and became increasingly popular over the years. There are an estimated 40,000 fusion surgeries done each year in the United States alone (quick math since 1970 means that there are likely over 2 million ‘fusioneers’ in the USA. This number can be likely doubled or possibly tripled for the world!).
5. Fusion surgery almost always causes additional issues over time including pain, extreme stiffness, spasms, disc degeneration, nerve compression, further curvature above and below the original fusion, flat back syndrome, broken hardware, infections; emotional, lifestyle and psychological challenges.
6. There is no standard ‘post-fusion’ protocol globally. In other words, there is no official support in the way of an internationally recognized physiotherapy or other therapeutic approach for recovering from fusion surgery, and for learning how to manage it day to day. Because of this, every single person who goes through this extremely traumatic and life-altering surgery procedure is required to figure it all out for themselves. Our organization, TOPS, believes strongly in changing this.
7. Regardless of the lack of follow-up support from the medical system, scoliotics tend to be incredibly resilient with the challenges that come with this condition - managing their pain, discomfort and fears with grace and determination. It is common for them to spend inordinate amounts of time and money exploring every possible exercise and healing option to find relief.
8. Considering that the most common form of scoliosis - adolescent idiopathic scoliosis (AIS) appears in the early teen years, many scoliotics and fusioneers are very athletic, as the common hyper-mobility experienced by many is great for all sports, plus acrobatics, skating, and dancing. Staying strong is essential and allows many people to enjoy athletics throughout their life - with extra mindfulness always.
Safest athletics include:
walking
hiking
swimming
biking
skiing
rowing
Hardest activities tend to be:
jogging and other sports that require running
tennis (or any racket sports that may increase asymmetry)
horseback riding
group sports which may involve tackling or falling.
NOTE: Never say never. I have met people who DO IT ALL - Olympians included.
9. Learning how to be both cautious and mindful, while also being brave and fearless, are the most important lessons for finding solutions for yourself. How to learn this? By practicing meditation, breathing, somatics, yoga, walks in nature - or any activity that gives you time to truly ‘sense’ yourself.
10. Recently, surgeons have started offering corrective surgery to adults of all ages. In the past, they always wanted to ‘catch’ the curve during the teenage years, putting incredible pressure on the parents to make a decision quickly; often before the teenager is able to properly understand their own choices. Waiting gives people more options all around, including the choice to try movement therapies and possibly avoid surgery.
11. Almost everyone with scoliosis and/or fusion craves to ‘get in shape’ or ‘feel straighter’ or ‘get stronger’, but they often feel unsure about what activities are safe, which can keep us stuck. It is important to keep moving and stay supple, but it sometimes takes time to find the right approach for you. The best idea is to consult with scoliosis-specialized professionals.
12. It is a tricky balance to really learn how to observe the many and differing sensations that occur in a curved and twisted body, especially after surgery. Connections get lost, and proprioception is often compromised. It is a very important thing to learn to differentiate good pain and bad pain, good days and bad days; what you feel you can handle and what you can’t, etc.
… AND to not judge yourself, one way or the other.
13. Most orthopaedic or neurosurgeons who perform scoliosis surgery are very skilled at what they do and we are grateful for that. Unfortunately, most are not able to offer any follow up support, nor give helpful suggestions for effective alternative therapies. They are always ready to do more surgery — and unfortunately, that is often necessary due to degeneration in the discs above and below the fusion, or because of flatback syndrome, or some other complication resulting from the first surgery.
14. Aging can be difficult for anyone, but people with scoliosis often notice worsening problems with age, including more pain, nerve compression, a sense of collapsing, loss of balance, chronic headaches/stomach aches, incontinence, joint problems, and in some cases auto-immune disorders related to anxiety and stress.
15. There are many other spinal conditions that are occasionally seen along with a scoliosis diagnosis, including spinal cord anomalies like:
spina bifida
split or tethered spinal cord
small spinal cord cysts (syrinx)
chiari malformation
Often these accompanying conditions are asymptomatic, but they may worsen with age. Modern imaging technology has allowed for better diagnosis of strange symptoms that in the past were often considered ‘all in your head’. It is highly recommended that all scoliotics and fusioneers get updated images done every once in awhile to monitor our own potential spinal changes over the years.
16. There are dozens of videos on YouTube discussing the effects of scoliosis and/or spinal fusion surgery, as well as demonstrations of therapeutic movement approaches by an increasing number of 'scoliosis-specialized' teachers, trainers and coaches offering various programs. Every person’s curvature is unique, so everyone must discover what works for them. I have also learned that ‘less can be more’ - especially on difficult days. In fact, on the hard days, it can be good to just stop and breathe.
LINK: Breathing technique video (from our 10+1 Simple Exercises for Scoliosis and Fusions series).
The most popular scoliosis-focused training systems include:
Yoga for Scoliosis
Pilates for Scoliosis
Somatics for Scoliosis and Fusions
Weight training for Scoliosis and Fusions
LINKS:
TOPS Team & Associates
TOPS workshops, classes & retreats
Samamkaya Yoga
17. There are several interesting podcasts about scoliosis and fusion online, and there seem to be more all the time. A quick google search shows these podcasts (below). There are also many Facebook and Instagram pages that are very active and full of resources that are building towards a robust online scoliosis community.
18. For those who have undergone a spinal fusion to correct a scoliosis, it is equally—if not more—important to address the fusion as much as the scoliosis. Before exploring new exercises, it’s helpful for each person to know what vertebrae are involved in the fusion, what kind of hardware was used, and to go VERY slow while re-discovering the potential range of mobility. Do NOT try to ‘keep up’ with non-fused people.
LINK: All About Fusions blog post
19. It turns out that it is very common for surgical hardware to be recycled! By the time the hooks and rods are used for a fusion surgery, they may have already been in another (or several!) other bodies! This was a shocking revelation, which I learned from someone who actually designs surgical instrumentation. As he explained it, I understood why there are so many people who experience chronic infection after surgery, often causing them to have another surgery to remove or replace the hardware. Fortunately, this same doctor has developed a new system for sterilizing and packaging hardware to make it much more safe and secure.
20. Most people wth scoliosis and/or fusions find relief in a myriad of alternative healing techniques including:
various kinds of supportive care (massage, acupuncture, osteopathy etc)
various props, such as electronic massagers
hot and cold pads/baths/showers
heating pads
massage balls
traction straps
yoga wall pelvic swing
inversion table
special chairs, desks, beds, pillow for driving, etc
floating chambers and/or aqua therapy
shoe lifts or orthotics or special footwear
emotional counselling, trauma-based therapies.
LINK: Supportive Care
21. Although many people need painkillers on a regular basis, there is a growing understanding that opioids are dangerous and should be avoided when possible.
Other pain relief solutions include:
cannabis therapies, especially a combination of THC and CBD in an edible form (where it is legal!)
following a specific diet (such as an anti-inflammation diet)
taking specific supplements and vitamins
meditation and deep breathing
22. Never ignore pain. Never do exercise that increases pain. Learn to become curious about it. Usually some kind of movement therapy is the best way to shift it.
LINK: All About Pain and Scoliosis blog post
Anything to add to the list? We would love to hear what you have learned about your scoliosis and/or fusion - and we will add it to our next list! PLUS we will draw names from the submissions for a prize: winner gets a free copy of our new video series (coming soon), ‘10+1 Somatic Movements for Scoliosis and Fusions (on the floor)’.
Read the next blog post—reflections on and learnings from my first ever yoga retreat!—here.
Questions? Feel free to get in touch.