The Part of Scoliosis and Spinal Fusion That Is Really Hard to Talk About

The future is hard to talk about, because it’s largely unknown. I have no idea what to expect in the next 10 years. I have no idea what to expect the older I get. I’ve searched for answers. I’ve looked through medical research, but there doesn’t seem to be a clear picture as to what the future holds for people who have had scoliosis spinal fusion.
To make it easier for myself and for anyone else searching for answers about spinal fusion, here’s an infographic I created based on the statistics that I found in various medical journals:

The part of scoliosis and spinal fusion that is really hard to talk about.png


21 thoughts on “The Part of Scoliosis and Spinal Fusion That Is Really Hard to Talk About

  1. Thanks for sharing this is really interesting. I feel like spinal fusion has come such a long way even in the past 20 years. I am 10 years post surgery this year – for a correction of an 83deg curve. The biggest part for me was learning to deal with it and that my life had changed. I am proud of what I have achieved and think my strength and ambition has a lot to do with what I have been through.
    I know you are trying to share the risks and ensure people making a decision know, but I think it would be worthwhile throwing in a few good facts about surgery, I am sure the internet must be full of them too!

  2. Thanks for the great idea! I think it would be a really helpful post. If you find any useful information about long-term positive outcomes about scoliosis spinal fusion please feel free to share it with me.

  3. I know of a distant cousin of mine who had the surgery back when people still had to stay in a body cast afterward. She had two children, and she does not have any complications that I know of. She is probably in her late fifties or early sixties now. I do wish there were more specific research on what happens later in life. It seems like once doctors perform the surgery, they feel like their job with the patient is over. On the other hand, I really do not want to live my life thinking about the negatives that could happen. I try to take one day at a time because life is tough enough as it is without adding worry on top of it (lol). Some days I do get angry that pain and discomfort are part of my everyday existence, and other days I remind myself that the surgery probably saved my life.

    1. Oh wow! This is so encouraging! I’m doing really great so far. I’m currently 28 weeks pregnant and I walk every day and do a maternity workout — I think it has helped me. It’s nice to know other people have done it and are doing well way after it. How are you doing? How old are your kids?

      1. Oh, man, it is getting so hard. My hips and rib hump area are killing me. 34 weeks now and I’m not sure how I am going to make it to 40!

      2. Be ready early just in case. I ended up having my son early, and I was not prepared at all because I thought I would have more time!

      3. I ended up in the hospital 6 1/2 weeks early because of preeclampsia, and I had him five weeks early through an emergency c-section.

      4. Hello Mama Muse! I need to write an update, but being a new mom, I have no time! I ended up almost dying. I lost about 4 liters of blood and had to have major surgery. Hope you’re doing well 🙂

      5. Wow, I almost died toward the end of my pregnancy too, but it was because of preeclampsia. It sounds like something different happened for you. It can be really traumatic when birth goes that way, so I hope you are doing okay. I know I had anxiety for awhile after I was out of the hospital because of all the trauma I went through. It was still worth it for my little man. I hope your baby is doing amazing.

  4. Forgive me for resurrecting this sorta zombie post.

    Shockingly, I was diagnosed at 55 with congenital scoliosis. How they missed it I don’t know. I have sacralization as well as a hemivertebra at my thorocolumbar junction. It’s like no one ever really looked at my MRIs except to validate herniations. What…No one noticed the, uh, TRIANGULAR shaped vertebra and thought maybe that wasn’t quite right? Or my L-shaped spine? That didn’t raise red flags? Funny in a way. I wonder sometimes if I’m the oldest person diagnosed with the congenital form of the disease.

    I was glad to hear you made it through your pregnancy and birth. I had one pregnancy (and one kid) via emergency C-section, two weeks past due. Dilation stopped, labor didn’t. Hemorrhaging was a bonus. Failure to progress, but my strange wee Scorpio daughter (now 35 and towering over me!) has been interesting. Later found out all birth complications were likely due to scoliosis.

    I wonder how the medical professionals missed it, but how did I miss it? I powerlifted competitively. I played league (post-collegiate) rugby. Took off to live in Europe when I was 18. Been falling out of trees, down stairs, herniating discs and otherwise testing my poor, weird skeleton mercilessly. Whee!

    Supposedly now it’s too late to do anything. Unless rods are now approved to run from the skull to the pelvis! I probably wouldn’t survive the surgery anyway, but it sort of leaves me in a very weird limbo where I’m getting twistier and twistier, docs agree it’s a serious, terrible problem, and no one wants to come near me with a ten foot pole. However, they all agree I need help. Last week a neurosurgeon saw me for 10 minutes, and told me that he doesn’t work on anyone who is injured due to a disease. Yeah. And I live in a city with a Shriners Hospital–lucky me! Best in the country for congenital anomalies (burns, etc…). But… I’m an adult, so sorry. Not even a referral.

    I don’t regret one crazy thing I did though. In fact, I wonder if being strong physically delayed the progression of the curves. I’m in a lot of pain much of the time now but I can do exciting parlor tricks like turning 180° to my right (but 0° to the left!).

    Do you know if there are syndromes associated with this? No one seems able to tell me. I have some rib anomalies and also Asperger’s, and I can’t help but wonder. The only ones I’ve run across seem to involve heart, kidney and/or facial issues.

    So, thank you for your blog, really. I rarely post anywhere, but figured I’d chime in to say hey–i made it this far in complete ignorance. You got it made! And babies are great, hilarious distractions. Teach them to swim early, and keep them out of the cat litter. Worked for me. Expose them to as many languages as possible right this minute! And germs create a good immune system as well as excitement (“She ate WHAT???”).

    It’s trite, I know. But whatever doesn’t kill us does make us stronger, so let’s all rejoice, right? Right. Beats the alternative!

    With love and respect,
    The Riverwitch in New England

    1. Have you looked back at older photos of yourself and noticed the scoliosis in some photos? Or was it that hidden that you would never be able to tell?

      I had MAJOR hemorrhaging as well during my delivery – I lost 4 liters of blood and almost died. I had to have emergency surgery after Lukas was born. I wonder if we are more prone to hemorrhaging for some reason because of scoliosis? Lukas, like your daughter, was also two weeks late!! Oh, the misery 😉

      Spinal fusion and rods will help correct the curve but all the consequences that come with it makes it questionable as to whether or not it’s even worth it. I’ve had two surgeries and i don’t regret it, but my body feels like it’s much much older than what it should be.

      The pain is unfortunately part of the horrible scoliosis package. There really nothing that I have found that will take the pain away, but you have to find ways to make it slight less horrible. Accupunture has worked for me, yoga is something I do a few times a week, swimming, basically low impact activities, but when in doubt you have to keep moving. It’s excerising that will help keep your joint soft.

      I have no idea if there are any other syndromes associated with scoliosis – there really needs to be more research done on this condition. My ribs are all sorts of funny , mostly because I had this major hump that was removed during surgery and replaced with bone graft.

      How’s everything going so far?

      Hoping all is well on your side of the pond.

      Sending a big hug your way!

    2. Hi there, I am a 62 year old woman and my scoliosis was discovered in my late 30’s. I have a double S curve, and the lower curve was 45 degrees. Now it’s 60ish. Got a lot worse at menopause. I was fitted for a SpineCor brace, which is a flexible brace that can keep your curve from worsening, and improve it a bit while it’s on. It’s not a bad option to keep you feeling better. A bit awkward to wear sometimes, but really good for pain relief and stopping further progression. Some insurances cover it. Those who prescribe it aren’t in every state, but you can put SpineCor blace into Google and get more info. I am in Philadelphia and went to NYC to get fitted with mine. They are custom fitted.

      Best of luck to you!

      1. hi there, do you wish you’d got surgery, or did you consciously decide not to? i’m 47, just diagnosed with 5 degree – menopause looming..surgeon yesterday said he thinks i’m a ‘good canditate’ for surgury. he’s an excellent surgeon. but i’m torn. would love any advice. thanks Sinead

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