I am a scoliosis mum - AMA

[ScoliosisMum5]

My DD was diagnosed with scoliosis a few years ago and has since had major corrective surgery. More than happy to answer any questions and raise awareness of an often misunderstood condition!

Hi @ScoliosisMum5 and thank you for an interesting AMA topic.

My only knowledge of this condition comes from Judy Blume's book 'Deenie' where the character had to wear a back brace, which she was told was a better option than surgery (I think the book was written in the 1970s). How is your daughter doing after her surgery; has it fully corrected her spine?

She is 2 years post-op now and doing fantastically, very active, just like any other 20 year old really! She rarely gets any pain which is a huge improvement to what life was like pre-op, she used to really struggle and could barely make it through a day of school. Surgery was a huge success in every way, truly life changing for her and we are very thankful. Her spine went from a near 60 degree curve to completely straight - the surgeons did an amazing job.

Wow, that's amazing, great to hear it was a complete success. A 60 degree curve sounds very painful and limiting.

Has your adult daughter given you permission to talk about her health online?

My DD has scoliosis too and has had back braces on and off for a number of years.

Did you find rhat you DD's curvature accelerated in puberty? We were warned that this could happen but it didn't really seem to - although her hips did become much more uneven.

Also, was your DD born with hip dysplasia? Ours was and I suspect that it wasn't properly treated and that that was the start of things.

Why does OP need permission? Her post is not remotely identifying, and people on Mumsnet regularly discuss the health of adult family members.

Absolutely - DD is very passionate about raising awareness of scoliosis and is very open about her journey.

From your thread title I thought you meant you were a mum with scoliosis.

My daughter has scoliosis 90+* before fusion. She also had hip dysphasia. I’ve always wondered if there is a link. X

Don't be ridiculous - it's an anonymous forum and the OPs post is not especially outing.

Plus I namechanged to be safe.. nothing outing at all!

Yes - we noticed DD’s curve after a massive growth spurt aged 15. It progressed very quickly as she grew. Definitely directly correlated with puberty in our case.

No hip dysplasia, she was always perfectly healthy which made it all quite shocking when things came about

Anyone? 😆

No, the footies on!

I completely forgot - can you tell that we’re not English 🤣

Don't worry, we're not all watching the football 😃

I'm actually doing both 🤣.
Trying to think of a question, this is very interesting and I know nothing about it

I have scoliosis. Mine was diagnosed by the school nurse in the early 70s when I was 11.

I was quite keen to have the operation but my mum vetoed it completely, so I had to wear a back brace until I was 18.

I'm in my 60s now and have back pain most days, and of course I have the associated pot belly (thankfully people have now stopped asking if I'm pregnant!). I also have bad acid reflux too which I understand is also a potential "side order" with scoliosis like mine.

How long was your daughter in hospital after her operation? And how long did the operation itself take? It's so good to hear that her life has improved so much.

I have scoliosis also, diagnosed around 11 or 12, never had the operation and have back pain every day now.

Did you ever consider not doing the op, was the doctor strongly for it?

I had it, had the op age 21, it was brilliant and the recovery much much easier than expected.

at the grand old age of 35 I tattooed wildflowers all down the scar, they’re my little symbol of resilience, flowers that can grow through cracks in the concrete!

I am so so so glad I had the op. I can’t slouch now!

So glad your daughter’s improving op! My DP has a genetic condition which can cause scoliosis. He has a severe curvature of the spine and had spinal surgery as a teenager. It was very new surgery back then and didn’t go too well for him unfortunately. He’s in a lot of pain daily his spine is completely fused and he can’t bend at all.

My youngest daughter has the condition too and her spine started to curve when she as about 12. Of course DP panicked but fortunately for her growing corrected her spine and it actually got straighter!! She’s just had the all clear to say she doesn’t need surgery 😁😁

I wish her all the best for the future xxx

DD was in hospital for 5 days post-op with 1 night in the high dependency unit immediately after surgery. It is amazing how quickly they recover - it used to be an operation where patients were kept in hospital for up to 6 months! Surgical advances in the last 20/30 years have allowed for far quicker recovery time and much better outcomes.

What degree is your curve? I have definitely heard of acid reflux being an issue in relatively severe cases.

At the beginning her surgeon was quite strongly against operating but unfortunately she had a late growth spurt which very quickly pushed her curve over 50 degrees (the territory in which surgery becomes necessary). She was in a huge amount of pain at that point, both physically and mentally so she really just wanted things to be ‘fixed’. Although it’s a big, scary thing to go through at 17 at the same time we were very glad that surgery was offered, it meant that there was light at the end of the tunnel.

If she hadn’t had the operation it is likely that her curve would’ve continued to progress at 1 degree per year throughout adulthood, putting her at risk of a very severe curve and all of the issues that come with it (breathing problems due to lung compression being a big one) in 20 years time.

@ScoliosisMum5 wow, that's amazing that she was in hospital for such a short time! What a fantastic advance.

You're absolutely right, we were told that I'd be in hospital for months. Actually I've just literally had the realisation that that's very probably one of the reasons why I was so keen to have the operation - life at home was really awful so I was very likely hoping for a break away from it for a while. Probably not the best reason for having major surgery right enough!

I don't know now what degree my curve is/was. I wore the Boston Brace for 7 years and it definitely did help.

@loropianalover if you don't mind me asking (just ignore me if you do!) did you have a brace too? Bloody horrible looking things, and uncomfortable, but actually did work on straightening out my curve a good bit.

@Steppingintome sorry to hear that about your husband, but that's excellent news about your daughter.

Is this becoming more common? DD had 3 classmates in secondary school with scoliosis, 2 had surgery and 1 had the brace. Before this, I'd only heard of it from Deenie, like a pp!