Ralph, I hope it all works out.
I think it might be worth your Sister making a private appointment to go up and see them - or at least get a copy of your nieces scans sent over for an opinion.
I have to word this a bit carefully - please don't misunderstand. What you wil definately get from Brad is a renowned expert opinion. He or indeed the Brish Scoliosis Assoc might not rate the Vertebral Tethering technique (I have no idea).
Essentially a number of things might happen.
1) They may be planning to trial it here - brill, see if you can get on the books.
2) they may have written it off in the UK as a technique they don't fancy (it is pretty new still) and Brad might advise against it. Plus there is the complicating factor, that the USA is a private system. Whilst it is true that once in a blue moon, the NHS fails on a costing basis, the same is true of private systems but it is FAR more common in private systems. Companies will sell techniques, and make them 'trend'. Also, some minimally invasive procedures are written up as The Way Ahead - but actually, sometimes invasive procedures are best - but if a company is signed up to use it - it will promote it and market it hard. We see that a LOT in the USA. A company or surgeon invents a technique - and sells it really hard. It doesn't happen here, as new techniques become the intelectual prooperty of the NHS.
3) They may offer a different technique.
4) They might have never heard of it! (unlikely!)
Anyways - he's a lovely guy - and he is a genuine expert - you don't get to be president of the British Assoc for no reason. He'll be able to offer guidance if nothing else... And its a day out to Salford - lovely... :huh:
This is the difficult bit.... Take it with a pinch of salt.
My little boy was diagnosed with Leukaemia in 2010. It was devestating, he quickly lost the ability to walk and was wheelchair bound, and was in constant chronic pain - for years. I wouldnt wish it on my worst enemy.
He had 3 and a half years of chemo - and is now recovering - despite trying quite hard to shuffle off this mortal coil once or twice...
I would have done anything - ANYTHING for it to have gone away - eventually it did - but I've cheerfully died to not see my own boy, my best little mate, look at me with the fear he did, when we came at him with those drugs, and needles, time after time after time. It is devestating - so I DO have an idea of what it is like.
We met a LOT of children with life threatening and life limiting illnesses. Some of the parents were told that there was only Palliative care open to them. Many families accepted that with good grace and made the best of their days together.
Some families were unable to accept that news. There is such a phenominal pressure to "Never give up" and "fight to the end" that you will literally do anything. We beleive in miracles. And why shouldn't we?
Now, whilst I'm not suggesting your niece is poorly in that way (god forbid!) I have seen SIX families try to raise hundreds of thousands of pounds for Specialist Cures in the USA.
And when they contacted those hospitals in the States, they assured them they had the best treatments in the world. They were sold mega expensive packages - its how they make a profit.
Three of the families went bankrupt. All of them lost their children. Our oncology team told every single one of them, that they didn't feel it was in the childs interests.
Now - I may be wrong - at least you can ask Brad and he'll give you a very honest answer - he has nothing to lose or gain. But, if he suggests that Tethering isn't the way ahead (and I don't know - it MIGHT be) then listen to him.
Not a single family raised enough money - charity is a cold hearted industry - raising a few grand is one thing - but the sums you discuss are nigh on impossible without house sales. Sometimes its better to accept the invasive procedure - and invest the money in supporting the child instead. I really dont know the answers.
So- best of british to you all - go and speak to the best - take the yanks with a pinch of salt - and as they say - make good choices!
Please don't think I'm putting you off - it could happen - I hope to god it does. But have a chat with them and see what they say. Then do your homework like you've never done it before! (thumbs) At least you'll have a worlds eye view and an expert opinion from Brad, which is a great thing to have!
Afterall - option 5) might be - them recommending a paeditric surgeon in the USA!
All the best
Phil
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