Scoliosis

[phlebasconsidered]

My dd has a first appointment to assess her back in a few weeks, the gp suspects scoliosis or spina bifida occulta due to a sacral dimple when she was born.

I'd just like to know a little about what might happen so I can reassure her. Her back curves to one side and also to the rear so her bum sticks out. She's quite anxious about it and our hospital letter really doesn't say anything about what might happen, only that it might be a long appointment! She is 10.

I was diagnosed with adolescent idiopathic scoliosis at 15 and had corrective surgery at 16.
It was over 20 years ago but I suspect the assessment process will be broadly similar. The orthopedic specialist you see will need to examine her spine in detail and from all angles so she will be probably be asked to change into pants and an open backed gown. There may also be x-rays and scans. She will probably be put into a schedule of appointments to chart the development of her curvature.

Thankyou John. That's helpful to know. She is extremely self conscious so its useful to know she'll have to be in a gown. It's curved so rapidly over the last 6 months she's really awkward about getting changed. I'll buy her some new big pants in advance!

As I say, my experience is from some time ago but do feel free to come back to me either here or by PM if you or she want to ask anything.

Hi OP,

I was diagnosed with an idiopathic double curvature of the spine about 10 years ago.

If it is Scoliosis, I suspect they will look into bracing given your daughter is quite young. They will create a back brace specifically for her to support her spine as she continues to grow and minimise any further curvature.

From my experience, they tend to try and avoid operating until children have finished growing as more problems can be caused in the long term if they operate too early. There is also a minimum curvature (it was over 40 degrees if I remember rightly) that needs to be reached before the operate. The surgery is quite invasive so a big decision.

I didn't have the operation, although I was offered it, for a number of reasons but I did have a month of intensive physiotherapy with a clinic called Scoliosis SOS. Their website is here: www.scoliosissos.com and the work they do is absolutely amazing. They actually improved my curvature through work with my back muscles and also relieved a lot of the pain I was in.

I'm more than happy to chat in more detail if you want to drop me message 😊

My DD who is 20 has scoliosis. I'll be honest it really messes with her head. Her curves are borderline for an operation (not quite at 50 degrees) but I think in many ways she'd rather have the op. It affects her mental and physical health (back muscles respond poorly to stress despite her core being rock solid and strong due to exercise.
I hope you have an easier ride than us. It kills me to see her in pain. And naturally it's worse for her. She is a student doing a demanding degree at a top uni so while it hasn't stopped her in some senses it's def made things harder and less fun.
Sorry to cast a shadow. I think tho that GPs in particular fail to deal with this as a condition that has all kinds of side effects.
Scoliosis Assoc UK are v good for advice and for putting you in touch with other folk x

Hi, I also have scoliosis and John’s description sounds spot on. I had a spinal fusion due to the amount of curve and it was like a magic cure - it’s a huge op but it resolved everything. I didn’t even get any back pain during pregnancy.

My daughter had spinal surgery to correct her scoliosis 10 weeks ago.

We first went to our gp 18 months ago. 5 months to see spinal team then 12 months wait for surgery.

Things I have learnt that may help you... the wait from gp referral to seeing a spinal specialist can be long. Many people pay privately for the initial consultation and to get on the waiting list if needed and then move over to NHS.

Ensure your GP has revered you to a spinal consultant/specialist and not to a general paediatrician (this seems to happen a lot and then you have to wait to see the correct person)

The two types of treatment are bracing, however this is not used if a curve is over a certain degree (my daughter wasn’t offered this option)

and Surgery which your consultant will talk you through should thus be needed.

There is a very helpful and supportive group on Facebook called

parents if scoliosis children uk.

It is a closed group and a great place to find all the support and answers you will need over your journey.

I hope your appointment goes well, please feel free to ask if there’s anything else you want to know I know at this point you will be feeling scared and apprehensive x

I agree with a PP, I think they'll look into bracing, at least until she stops growing. They'll take lots of x-rays and blow them up on a big screen to measure her curve, which will determine whether she needs a brace. She'll be closely monitored to see how fast the curve is progressing which will determine whether the brace is working. If it doesn't, she may need surgery. Good luck, PM if you have any questions