Monday, 23 March 2015

Scoliosis check up

A few people have been been asking about how Sibs is getting on with her back brace so I thought I would do a quick update on how things are going.

It's been about four months since the last consultant hospital visit and her starting to wear her brace so during the last couple of weeks Sibs has had a couple of check ups with the medical team looking after her scoliosis. 

The first was for an MRI scan. This is for the research study that she is participating in where medical researchers are looking at the differences in the spines of children with scoliosis and comparing them with those without. Sibs is photographed, her rib hump is measured and then she gets to choose a movie and lie in the MRI machine whilst it does its thing. 

Even though her spinal curve is classified as moderate to severe it is almost unnoticeable when she is standing upright. I know what I'm looking for so I can spot it when she has a swimsuit or a leotard on but generally speaking you would struggle to know she has scoliosis. When she leans over though it is quite obvious that the top right hand side of her back protrudes and the outline of her ribs is clearly more defined than the left side. Thankfully this does not bother her either cosmetically or more importantly in terms of pain. For that I'm very grateful. 

I can manage the odd moan about the brace being uncomfortable when it's a particularly hot day but having to manage chronic pain in a child must be one of the most heart wrenching of things. 

Whilst she was lying in the machine I took the opportunity to chat to one of the researchers about some of the developments with the research study. The initial results of this research sound pretty exciting. Some of the already published papers and conference presentations point to some ground breaking findings.  They are still interested in anyone who could help out as a participant so I'll just shamelessly plug the details here.

The MRI takes about and hour and a half and the staff at the hospital make it as pleasant as possible. They are very reassuring and gentle and Sibs even got a juice after she was done this time. I have to say she did look a little pale when she finished and I think the sugar hit from the apple juice was needed to bring a bit of colour back to her cheeks. 

It wasn't quite enough though and as will probably become a little bit of a treat and tradition we headed off for a hot chocolate before I dropped her back at school in time for morning break. It was a really warm Brisbane morning and maybe an iced chocolate would have been a better option but you just can't beat a Max Brenner Italian thick hot chocolate whatever the temperature.

A week after the MRI scan we were back again, this time after school for an x-ray and an appointment with the consultant surgeon.

The car park situation for the MRI appointment at 7.45am the week before was a little crazy and it took 25 minutes to find a park. It also cost an obscene amount as I managed to get to the pay machine 3 minutes into the next pay level! This time, the appointment was for 4.15pm and as I drove near to the clinic just before 4pm there was a spare on road metered spot. I decided to take it and find out how much I needed to feed the meter or if I needed to mortgage my house! As I fumbled with remembering my car registration the meter suddenly blinked and this wonderful message come up "Free to park after 4pm"
So guess what time we'll be making any future appointments?

The routine is that we book into the clinic with Dr A and then pick up the paperwork to go for a x-ray. We are now experienced in remembering to wear clothes with no metal bits and Sibs is happy to take charge and book herself in - well that is until it comes to paying!

It's pretty efficient and within no time we were back in the comfy waiting area reading celebrity gossipy magazines and rating the best dressed gowns from some award show.

Dr A also takes some measurements of Sibs's rib hump and then compares the results of the x rays. He noted that Sibs has grown a couple of centimetres and that her skeleton is maturing. The good news is that the curve has not progressed since the last appointment. This means that the brace is doing the job that it's designed to do. That's good right?
Well, in the world of scoliosis and back braces we apparently need excellent, not just good....
In a perfect world, the curve would have decreased, but you know what, that's ok - things are not getting worse so we can live with that.

During the first couple of months of wearing the brace her curve did decrease down to 32%. Now I remember that I was really impressed with this. However, once Sibs stops growing and consequently then stops wearing her brace there is an expectation for the curve to slightly swing back.  So obviously the lower the degree of the curve then the more chance that the swing back will not be severe enough to warrant more intervention.
Dr A thinks that Sibs's curve is now a little stubborn and suggested that she tightens the brace and also inserts another layer of padding in a particular spot to try and push the ribs in the right direction. We're onto it.

I have mentioned before that Sibs has always been very keen to comply with wearing her brace as much as possible.  She is quite wary of the possibility of surgery in the future and whilst this is is an option, at this stage it is not particularly likely if her curve can remain below 40%. (Fingers crossed)

So that's where we're up to.

We'll have another check up with the orthopaedic clinic in May and Dr A is happy to leave his next check up for six months until September.

Sibs continues to make me proud of the way she handles her scoliosis. For every tricky day there are a heap more good ones. She rarely complains and manages to just get on with things. Of course there are challenge, and we have to consider certain things when making some decisions but on the whole she just keeps on smiling.

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1 Comments and thoughts:

  1. Hi Beth, sounds like you and Sibs are doing great! It's good that she's not in pain and that it hasn't worsened. The hospital trips are a chore though aren't they. Wishing you both lots of love, Linda xx