Re-published for Scoliosis Awareness Day 29th June 2013
Last week Teen came to the end of a road she (with us along for the ride) has been travelling for about five years. Which given she is 17 is a fair chunk of her life.
In late 2007 I started to notice her posture wasn't what it could be. She'd just turned 13 and at the time was spending many hours on her PC playing The Sims, so I put it down to too much time leaning over a hot computer game. Just the August before we had been to the Canaries and she had seemed all right then.
But one day in November she came to me and said, "Take me to to the doctor's, I have a hunchback!"
Of course being me my first reaction was denial. "You're fine," I probably said; but looking at her in her dressing gown I knew that something wasn't right. I had probably seen it but not seen it, if you know what I mean. Her right shoulder did indeed protrude more than her left.
With typical procrastination, borne of fear, we didn't see our preferred GP until after Christmas. I sat there (as I always do in GP surgeries) worried that we were either wasting his time, or that it was going to be really bad news.
He made her bend forward, looked her over, and then went to his desk.
The verdict came in.No doubts. It was scoliosis, a curve of the spine into an S-shape, and she would have to be referred to a hospital consultant.
I didn't immediately come home and Google the condition. I accepted that she had a curved spine and that was enough for now. We had to wait for the referral and I would take it from there.
Ah, the Choose and Book system !
When the paperwork came through - I had just two 'choices'. Bear in mind we live on the NE London borough of Havering/Essex border. We had expected to be offered GOSH, or a specialist place. No. My 'choices' were Addenbrookes in Cambridge (a fine hospital but too far away and we had no confidence that the spinal unit was specialist enough) or Wrexham. Yes, Wrexham. In Wales. In another country.
So it had to be Addenbrookes. I picked up the phone to 'Choose'.
And was casually told that as they 'didn't have the paperwork yet', I should call again 'in about two weeks'.
To say I was frustrated is an understatement.
But there was a lifeline.
One of the more sensible things I did when I started work was to sign up with my company's private health scheme. I did it mostly because they gave you a cute Teddy bear just for joining. As time went on the policy incorporated my children too. It wasn't a comprehensive private scheme, but it would be enough to get Teen a private consult. The proviso was that the the referral had to be to a private consultant with an NHS practice.
R was immediately on Google, researching scoliosis specialists, and he found what turned out to be the perfect man for the job.
A referral letter and a few weeks later, we found ourselves in a different world; the Private Health Sector, at the Wellington Hospital in St John's Wood, right next to Lord's cricket ground. A land where there is coffee on tap, satellite TV in the waiting area - not that 'waiting' is a verb known in this amazing place.
Teen was whisked through for her X-ray and then we were in the office of the amazing, matter of fact, dry humoured and incredibly talented Mr Stuart Tucker, spinal adviser to the Royal Ballet School.
He looked at the (immediately returned) X- ray results.
"This," he said, "Isn't something that can be cured with a pill."
We were faced with the reality of the situation.
This is a 'normal' spine.
This was Teen's X-ray.
Last week Teen came to the end of a road she (with us along for the ride) has been travelling for about five years. Which given she is 17 is a fair chunk of her life.
In late 2007 I started to notice her posture wasn't what it could be. She'd just turned 13 and at the time was spending many hours on her PC playing The Sims, so I put it down to too much time leaning over a hot computer game. Just the August before we had been to the Canaries and she had seemed all right then.
But one day in November she came to me and said, "Take me to to the doctor's, I have a hunchback!"
Of course being me my first reaction was denial. "You're fine," I probably said; but looking at her in her dressing gown I knew that something wasn't right. I had probably seen it but not seen it, if you know what I mean. Her right shoulder did indeed protrude more than her left.
With typical procrastination, borne of fear, we didn't see our preferred GP until after Christmas. I sat there (as I always do in GP surgeries) worried that we were either wasting his time, or that it was going to be really bad news.
He made her bend forward, looked her over, and then went to his desk.
The verdict came in.No doubts. It was scoliosis, a curve of the spine into an S-shape, and she would have to be referred to a hospital consultant.
I didn't immediately come home and Google the condition. I accepted that she had a curved spine and that was enough for now. We had to wait for the referral and I would take it from there.
Ah, the Choose and Book system !
When the paperwork came through - I had just two 'choices'. Bear in mind we live on the NE London borough of Havering/Essex border. We had expected to be offered GOSH, or a specialist place. No. My 'choices' were Addenbrookes in Cambridge (a fine hospital but too far away and we had no confidence that the spinal unit was specialist enough) or Wrexham. Yes, Wrexham. In Wales. In another country.
So it had to be Addenbrookes. I picked up the phone to 'Choose'.
And was casually told that as they 'didn't have the paperwork yet', I should call again 'in about two weeks'.
To say I was frustrated is an understatement.
But there was a lifeline.
One of the more sensible things I did when I started work was to sign up with my company's private health scheme. I did it mostly because they gave you a cute Teddy bear just for joining. As time went on the policy incorporated my children too. It wasn't a comprehensive private scheme, but it would be enough to get Teen a private consult. The proviso was that the the referral had to be to a private consultant with an NHS practice.
R was immediately on Google, researching scoliosis specialists, and he found what turned out to be the perfect man for the job.
A referral letter and a few weeks later, we found ourselves in a different world; the Private Health Sector, at the Wellington Hospital in St John's Wood, right next to Lord's cricket ground. A land where there is coffee on tap, satellite TV in the waiting area - not that 'waiting' is a verb known in this amazing place.
Teen was whisked through for her X-ray and then we were in the office of the amazing, matter of fact, dry humoured and incredibly talented Mr Stuart Tucker, spinal adviser to the Royal Ballet School.
He looked at the (immediately returned) X- ray results.
"This," he said, "Isn't something that can be cured with a pill."
We were faced with the reality of the situation.
This is a 'normal' spine.
This was Teen's X-ray.
As our health scheme did not cover the actual op being done privately, we had to be referred back to be seen at the Royal National Orthopaedic Hospital at Stanmore (near Elstree/Mill Hill in North London) so that Teen could be operated on by Mr Tucker under the NHS.
After the verdict I was in a daze. It took me about two days for it to sink in. My baby girl, my perfect girl, needed a major operation. Two in one, to be precise, as she also suffered kyphosis (ie, the 'hunchback'). This stopped her going to her dance classes as she was expected to wear a leotard and she was too embarrassed to go anymore.
It would be another 8 months of waiting and worrying and a postponed holiday before the operation actually happened. She was never in any pain, thank goodness, but I suddenly understood the breathlessness she occasionally complained of. Looking at how her lungs must have been compressed it's little wonder.
We grabbed a week away together in late October after our pre-op visit to the adolescent unit which promised internet and DVD players and so on. Teen was asked by Mr Tucker if she had any questions. She said,
"What are the chances of death?"
I hadn't even contemplated that one.
"A million to one," he replied. And believe me, you don't disagree with Mr Tucker. He has an omniscient air about him.
The idea that as he operated on her spine paralysis could ensue fleetingly crossed my mind but I dismissed it. I had faith.
So in November 2008, in a chilly, post war, in need of rebuilding hospital, in only five hours, Mr Tucker rebuilt her spine and shaved her shoulder blade, to fix her. Ten days later she was home.
I'll write about the op and the stay itself in detail another time. But what I will say now is that if anyone is reading this and is in any doubt about having an operation like Teen's, don't worry. Do it. I'm not sure that back braces and physio are the answer. They certainly weren't in Teen's case. And I look at her now, her 'growth lines closed' as Mr Tucker said just a week ago, beaming and admiring his work and her 'lovely posture' , it was worth the tough time we all went through.
Shame she can't bend over quite enough to tidy her bedroom properly though isn't it ?
After the verdict I was in a daze. It took me about two days for it to sink in. My baby girl, my perfect girl, needed a major operation. Two in one, to be precise, as she also suffered kyphosis (ie, the 'hunchback'). This stopped her going to her dance classes as she was expected to wear a leotard and she was too embarrassed to go anymore.
It would be another 8 months of waiting and worrying and a postponed holiday before the operation actually happened. She was never in any pain, thank goodness, but I suddenly understood the breathlessness she occasionally complained of. Looking at how her lungs must have been compressed it's little wonder.
We grabbed a week away together in late October after our pre-op visit to the adolescent unit which promised internet and DVD players and so on. Teen was asked by Mr Tucker if she had any questions. She said,
"What are the chances of death?"
I hadn't even contemplated that one.
"A million to one," he replied. And believe me, you don't disagree with Mr Tucker. He has an omniscient air about him.
The idea that as he operated on her spine paralysis could ensue fleetingly crossed my mind but I dismissed it. I had faith.
So in November 2008, in a chilly, post war, in need of rebuilding hospital, in only five hours, Mr Tucker rebuilt her spine and shaved her shoulder blade, to fix her. Ten days later she was home.
I'll write about the op and the stay itself in detail another time. But what I will say now is that if anyone is reading this and is in any doubt about having an operation like Teen's, don't worry. Do it. I'm not sure that back braces and physio are the answer. They certainly weren't in Teen's case. And I look at her now, her 'growth lines closed' as Mr Tucker said just a week ago, beaming and admiring his work and her 'lovely posture' , it was worth the tough time we all went through.
Shame she can't bend over quite enough to tidy her bedroom properly though isn't it ?
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