Monday, 15 September 2014

Scoliosis - Diagnosis and Brace cast

I've thought long and hard about this blog post.

It's been written for a while and I just haven't got around to completing it. It's not because it's something that I wasn't sure about sharing, it's just that I wanted my girl to be completely comfortable with what is shared.  

A few months ago we started on a bit of a medical journey with Sibs. 

She and I have chatted about keeping some sort of a diary or some documentation about it all. We considered setting up another blog just for us and family and friends, but then it makes a bigger issue about what is essentially just another part of our story. So in the end we decided that we would keep a bit of a record here. So here it is - part 1, it's a bit wordy....

Towards the end of the Summer we noticed that Sibs had a slight difference in the contour of her back when she bent over to pick something up. She was wearing a swimsuit when I noticed it so her back was exposed and there was a definite unevenness between the left and right side. 

She told us there was no pain or discomfort, she was able to move and stretch so we parked it for a while with a promise to keep an eye on it.

A couple of months she mentioned that she had a pain in her neck so I immediately made an appointment with our GP to get it checked.

The GP asked a few questions and got Sibs to stand straight, put her palms together and slowly lean forward pointing her hands to the floor. 

A few measurements later and the GP advised that we needed some x rays to confirm a diagnosis of kypho scoliosis. (Basically, scoliosis is an abnormal curvature of the spine. In Sibs's case it presents as an inverted S. Wikipedia can give a detailed description of what scoliosis is - HERE)

A couple of hours later the x rays were done, Sibs was back at school and I was on my way to work. 

Neil was away so I left a message for him - not to alarm him, I just thought that he needed to know how I had spent my Friday morning! When he got an opportunity to call back he told me that as he received my message he had just finished talking to a researcher who was working on a study of spinal deformity in children. How's that for a coincidence? Through this contact he immediately got some reassurances and secondly a recommendation of a local scoliosis consultant/spinal surgeon.

So it was back to the GP who then arranged a referral. Things can move pretty fast here, and within a week  I received a phone call with details of an appointment for more x rays and a consultation. 

The consultation was an examination, a confirmation of diagnosis of idiopathic adolescent scoliosis and a talk through some options. 

Dr A told us that the normal range of curvature of the spine is up to 10% and Sibs has a curve of 37% which he deemed to be moderate to severe. 

He didn't believe that surgery was necessary at this point so recommended a back brace. The idea being that as Sibs continues to grow the brace will prevent the curve progressing. It would not cure the problem, just hopefully stop the degree of curvature. 

At this point I have to say that my girl has just taken all of this in her stride. She has a natural positivity and I have been incredibly proud and inspired by her attitude. 

So next on the list of things to do was to organise to be fitted with a cast for a TLSO brace. ( a thoracolumbosacral orthosis brace) 

The orthopaedic clinic was highly efficient and called me to arrange a convenient time and so Sibs and I headed there one lunchtime. 

We were introduced to Gary who after some chit chat about Sibs's name gave her a number to remember. She was going to be number 6230 - that's how many braces Gary has made in his 45 year career. Impressive....

Next we were taken to a small room and I don't think it had actually changed in 45 years! 

Gary was more than happy for me to take photos, and he kept directing me to where he thought I would get the best shots.  (I had obviously checked with Sibs beforehand that she was ok with this.)

He explained the process - Sibs was to lie balancing on an elastic strap and he was going to wrap her torso in plaster, wait for it to set and cut it off to produce the cast. 

I had expected a rather more state of the art digital something or other, but he obviously knows what he's doing.

When he invited any questions, Sibs asked him what would happen if she fell off the table. I could see that she was weighing up the odds!

In reply, Gary told her that she would be the first to ever do so. I'm not so sure.....

Anyhow, she managed to get herself in position and apart from a small fit of the giggles survived the casting. 

She wore a bandage type body stocking and a thin piece of plastic similar to a ruler was placed under this. The plaster cast was then wrapped around her body. The giggles came as she got a little confused between her torso and her tummy and her pelvis and when Gary was asking her to move she was moving the wrong parts!

She lay there for a short while and then the cast was scored with a knife along the piece of plastic and then cut. After a quick clean up she was done.

So what do you do after such an appointment? Well you head out for a hot chocolate and a little treat whilst Gary sets to work on brace number 6230!

Next on the agenda - an MRI scan.

7 Comments and thoughts:

  1. Beth, how brave of you to tell us all this. Poor Sibs, that table looked most uncomfortable. I have a neice with this diagnosis, she is 21 now, and I think she was diagnosed when quite young. She wears a back brace still, but not all the time. She manages to lead a happy 'normal' life.
    I am sure it was an awful shock for the family, but you are so close and loving, and will work your way through it together. Your daughter and mine are the same age,I don't know how I would cope with this news, but I suppose for your daughter's sake, you just have to move in. My thoughts and prayers are with you Beth. All my love, Linda xx

    1. Thank you Linda. It was pretty confronting at first, but as you say, you just have to move on. I appreciate your words.

  2. Good luck to your daughter! My cousin, who is half my age but has twice my strength and courage had the op a year ago and its now like it never happened..teenagers!
    May I ask if the doctor is Gary who was on My kitchen rules?
    Nessa x

    1. Hi Nessa,
      I haven't watched My Kitchen Rules - I'll have to investigate! (Gary is the Orthotist rather than the spinal consultant)
      Thanks for commenting,

  3. How amazingly brave of you both to share this story. I wish you every success with the treatment. It sounds like you have a very special girl who will find her own way of coping with this and taking it in her stride.

    1. Thank you Gina. I have been amazed at how quickly she is just taking it in her stride.

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