AMA - Scoliosis & spinal fusion surgery

[ScoliMum55]

June is scoliosis awareness month so I thought I’d do an AMA! DD (now age 21) had spinal fusion surgery to correct a severe curve 4 years ago. It was a long and difficult journey so I’m keen to support any parents/patients going through the same.

Both of us are happy to answer any questions relating to this or the condition in general - there are a huge amount of misconceptions it’s a cause we’re both very passionate about, DD even ran the London Marathon to fundraise this year.

Hi, congrats to your DD on the marathon (and the rest!) How painful was it and what was the recovery like? How did you weigh up the cost / benefit analysis of doing it?

I have a 21yr old who has suddenly started talking about getting the surgery. We didn’t seriously contemplate it when he was a child as the consultant seemed to think the risks outweighed the benefits. His curve has got worse though now.

What degree is his curve? DD’s was sitting just below 60 at the time of her surgery.

DD was always very determined that she wanted her curve fixed and to be honest it was a relief when she finally got to the point where the consultant recommended surgery. She was very self conscious and had a lot of pain pre-op. The operation was life changing - her back is perfectly straight with 0 pain and she’s now a totally normal, active 21yo.

If he’s interested in surgery then it’s best to push for it sooner rather than later. The older they get, the stiffer the spine becomes which makes the operation itself more difficult

She says thank you!! Recovery wasn’t as bad as we were expecting. It’s a notoriously painful major surgery so I was anticipating the worst - in reality both I and DD were very pleasantly surprised. The first few days were very hard in terms of mobility and pain, she definitely struggled a lot with the sudden lack of independence - no teenager wants to be relying on their mum/nurses for bed baths, getting dressed etc.. Once weaned off morphine and feeling more like herself again she made progress at an amazing pace. By week 1 she was wandering around Tesco with me like nothing ever happened and back to having coffee date with friends. Teenagers never fail to surprise! 🤣

To be honest there wasn’t much weighing up to be done - DD was absolutely miserable with her curve and just wanted things fixed so that she could get on with her life. She was was really self conscious about her back/waist and couldn’t wear the clothes that she wanted. It was heartbreaking as she was constantly hidden away in baggy tops etc. She didn’t even want to go to prom. Pain was a huge issue and I’d often pick her up from school in tears as she was in agony from something as simple as sitting at a desk. Even a few weeks post-op the difference was completely night and day - such a confidence boost. It was amazing to see her pain free and so much happier in her own skin.

Another perspective here - i have a double curve that would have been just cosmetic fix so we (mainly my mum) decided not to. I have sometimes regretted it over the years but really from the front you can't tell, I have had 2 natural (ish) births and even did a spot of modelling in my youth. However, I think the operation have come on a LOT in the last 30 years. No question really, just support for your wonderful, and impressive, daughter ❤️

I also have a double curve, which sort of balance each other out. I dont have any questions but am glad to see this being discussed.

Sadly mine wasn’t picked up til late on in my 20s when I started getting pain, and now as I approach 50, I’m getting more pain, muscular, deteriorating discs and trapped nerves. I wish I’d been offered surgery earlier, consultant said now that there’s no point. Well done to your daughter and I’m so pleased she’s making the most of her life! A marathon is a major accomplishment for anyone much less someone who’s overcome major spine surgery.

My Boy has a 76 degree kyphosis. Tried bracing but that's a method of torture considering the kid already has a jej, peg and spc