I live with a metal spine - AMA!

[Scoli78]

I developed scoliosis as a teenager and in order to straighten my spine I had surgery to implant 14 screws and 2 30cm long metal rods into my back. AMA!

God im waiting on a spinal fusion anyway ok in 53 but im still dreading it hope your ok

Do you have a decent range of moment? Are you in pain?

I still have really good range of movement as luckily the scoliosis only affected the thoracic area of my spine. My lumbar spine was left ‘normal’ with no metalwork so I can still bend forward to touch my toes etc. The only thing I can’t really do is twist - it’s manageable though and small accommodations like a reversing camera on my car make life a lot easier.

I have very little pain in comparison to before surgery. It’s a lengthy recovery so it did take a long time post-op for me to be relatively pain free though (around 6 months). Winter is my nemesis and I can get quite achy due to the cold and subsequent tense muscles, I can really feel the metalwork when shivering (🤢) so I wear thermals to try and combat this.

Does the surgery fuse your vertebrae, or simply hold them in correct alignment?

Do your individual vertebrae all bear weight, or is it all loaded into the one beneath the really rods?

Two of my dc have very mild spinal charges of direction, one scoliosis, the other the spine is straight, but a section is rotated around its longitudinal axis. I can’t remember the name for. that.

The dc with scoliosis skydives, the dc with the other form dances.

Yes, the vertebrae are fused. The only reason for the metalwork is to temporarily stabilise + hold the spine straight whilst the bone fuses around it (in order to do the operation they effectively break your back). Technically speaking I could now have all of the metalwork safely removed and my spine would stay in the same position.

The 4 remaining lumbar vertebrae underneath my fusion/metalwork and the only ones that move, therefore they are left to take all of the working load which will eventually lead to early degeneration. It’s the price you pay!

I’ve been skydiving with my fusion - if anything having it done has made me more determined to get outside my comfort zone and prove to others/myself that scoliosis surgery isn’t the end of the world!

Oh wow! My son (14) has to have a rod for his scoliosis (diagnosed October 2024) He wore a brace for the past year but his cobb angles have progressed to 58 and 80 degrees. He'll be having surgery at Leeds in a years time.
Do you have any words of wisdom for him? He's worried 😟

Thank you.

My skydiver also has Crohns, and has been hugely inspired by a very experienced diver who has a stoma. They feel it makes their medical future seem less bleak.

My best words of wisdom are that walking is the best medicine post-op! The more movement he does the quicker he will recover. It’s a daunting surgery and he has every right to be worried but I can hand on heart say that it totally changed my life for the better. No longer self conscious about my curve, having to hide it away 24/7 and the severe back pain that I used to experience on a daily basis totally disappeared after surgery. The first few days/weeks are challenging but so worth it.

Sorry to jump in but I had my spine fused from T10-L5 in 2009, in my 40s

I've had a very different experience, I’m glad your experience was more positive

I’m so pleased it was a success for you. What was your curve & when it was straightened was the curve close to zero?

did you wear a brace or have any physio?

That sounds really difficult. I was in my late teens when mine was done, plus only fused down to L1 - both of these aspects certainly made life easier in my case.

What are the main risks?

Paralysis is the main risk of surgery since it involves working near and moving the spinal cord. Thankfully very rare these days as they use neural monitoring during surgery to identify any potential nerve compromise before permanent damage occurs.

@Scoli78 could you please take a look at my questions thanks

My curve was around 60 degrees, reduced to near 0 post-op (there is a tiny bit of residual curve but it’s so small that it’s unmeasurable). Overall surgery was a great success and I am very straight. I was never braced but I did do specialised physio exercises pre-op

Hi OP can I ask how old were you when you had your surgery, I had mine at 16 30 years ago and it sounds like although the nerve monitoring has improved the surgery is very similar, was yours the single operation version or the split procedure where they operate twice?

I’m glad you had such a good recovery from your surgery but would flag that recovery as a teenager is very different from that as a middle aged adult.
I have 30 screws and am fused from T3 to L5 with a 55cm scar. My surgery was 3 years ago and I’d do it again in a heartbeat although my recovery has been long and hard. My metalwork can never be removed as although my spine has fused it will never be able to support me without help.
I think it’s great that you are raising awareness of this condition!

Are you taller now?

Thank you. Are there ongoing daily risks?

We used to look after kids on my ward after scoliosis repairs. And a few of my now colleagues were our patients as teenagers after that surgery. They remember me, but I don’t remember them. It wasn’t until I saw the procedure on TV that I realised how barbaric it was and how painful it must be!

No, not really! I’ve been told by my surgeons that my back is just as strong as anyone else’s. There will always be the risk of degeneration underneath my fusion but this also occurs naturally in the general population. I had all limitations lifted at 1 year post-op and was simply told to forget about my scoliosis as much as possible and go enjoy life to the full.

Have you been advised why your spine developed scoliosis?

is it because of Ehlers Danlos syndrome?

glad to hear your procedure has been so successful.

Like most cases my scoliosis is idiopathic, meaning that there’s no known cause.

No EDS, although you’re correct that this is commonly associated

I’ve watched it on TV a few times, equally interested and horrified that this is what we scolis go through! Always amazed by the talent of the surgeons

MY DD is 4 weeks post op. She’s 13 and 6 months since diagnosis when the curvature were angles of 65 and 57.

She doing well regarding walking about and being independent but she has been struggling to put weight back on having lost half a stone (even without the weight of the metal). She already have a very, very slight frame as she always viewed food as fuel only. Any tips?