Urgent Operation for our son, James
Dear Friends, Family & greater community
We need your help. Our son James (15) has had a complicated few years with medical issues (see James medical history appendix below) which has left him with a degenerative spine condition called Idiopathic Scoliosis (progressive curvature of the spine).
With slow and outdated support from the NHS and funding denied by his private health insurance company we need to raise £40,000 by April/May this year, so that James can under go an operation that will give him a future not filled with pain and disability.
To give James back the normal life he lost when he was 10, a life we hope all our children will have.
For many, Scoliosis can be managed without surgery but unfortunately as of Oct 2017 (see Dr letter in appendix) James condition has passed a threshold which means it will continue to degenerate throughout his life increasingly reducing his mobility while causing persistent pain and the likely need for increasing surgery as he ages.
Find the best help
When James was originally diagnosed in May 2017 we were devastated, but unlike the previous four years managing James’s hip issues, this time we had private health insurance. Through a friend of a friend James was referred to a scoliosis specialist Mr Bernard who became James medical physician. Mr Bernard was one of the few surgeons trained by Dr Betz (US surgeon) a pioneer of scoliosis treatment, more on this later.
Try to avoid surgery by doing threapy
In an attempt to avoid the need for surgery we extended our mortgage on our house in May 2017 so James could attend two weeks intensive Scoliosis therapy at a specialist centre in the USA that for many has helped remove the necessity for surgery. Alas James is one of the few young scoliosis sufferers that did not respond sufficiently well to the therapy to remove the need for surgery.
Treat with most appropriate surgery
In the last decade a new surgical solution for people in James position has been developed by the aforementioned Dr Betz called ‘Vertebral Body Tethering (VBT)’. This is a quantum shift in the treatment for scoliosis and will if conducted in good time (James was given a six-month window as of Nov 2017) return James spine back to normal function i.e. back to normal mobility, no pain and normal growth. The standard operation for scoliosis is Spine Fusion with Harrington Rods which is a very much less desirable approach (see comparison appendix below).
The NHS and NICE are still reviewing VBT (don’t hold your breath) leaving us and more than 500 other families today looking at private surgery abroad or less desirable fusion surgery in the UK.
Right Place, Right Time but a bitter pill
We are lucky to have the right physician, Mr Bernard at the right time as it was only days before James last check up in Nov 2017 that an NHS Trust agreed in principle to host VBT surgery with Mr Bernard under their private work, but here’s the kicker as of the 4th Jan 2018 our private health insurance provider CIGNA, on appeal have declined to fund James VBT operation, which has left Christine and I shocked and in a difficult place needing to raise the £40,000 that the surgery will cost! Though thankfully not the $150-200,000 it would cost if we had to go to the USA.
WE NEED YOUR HELP TO HELP JAMES !
As uncomfortable as it is, we need to ask friends, family and the broader community if they can help James by contributing what they can towards this VBT operation.
We have a small window for the optimum result for James, ideally James has the operation by April/May 2018 so we need to raise the funds by then! We hope you can help.
Wayne, Christine, James and Josie
James Armstrong’s Medical History Appendix
James now 15, was a very active youngster, being a very good gymnast and martial artist.
Unfortunately at the age of 10 in 2012 he acquired an unidentifiable hip injury that led to four years of reduced mobility and chronic pain.
Christine and I had funded different private specialists to no avail, but by luck and persistence at the end of 2015 we got James referred to Nuffield Orthopaedic Hospital in Oxford.
James was very quickly put under the care of one of the UK’s finest hip specialists, Prof Glyn-Jones, who diagnosed James with a hip label tear, which had led to chronic pain syndrome, requireing a multidisplinary clinical response. Something that was missed by all the other Private and NHS surgeons.
During James trial with his hip, and having spent our savings on his treatment, we got both James and Josie private health care in case anything else cropped up.
After a year of many trips to Oxford at the end of 2016 James attended an intensive two-week residential therapy programme at Nuffield which put him on the road to recovery.
2017 was James’s new beginning and he was so looking forward to returning back to a normal life of mobility and activity.
Alas shortly after this time in early January 2017 we noticed a bump on James back, which later in May was diagnosed as Idiopathic Scoliosis, which has escalated to the point where as of Oct he needs surgery, a cruel turn of events given his history. It has progressed further since and as he grows the worse it gets.
Vertebral Body Tethering (VBT) vs Fusion Surgery
The effects of Spinal Fusion Surgery
- Irreversible disc fusion,
- Mobility reduction,
- Highly invasive surgery and associated complications,
- Long term (15-20 years post op) complication rate (including severe pain and disability) for post fusion patients is 40-55% with a 10% re-operation rate.
In James’s case this need not to be endured.
Vertebral Body Tethering represents a natural clinical progression to treating Idiopathic Scoliosis as a scaled treatment while not precluding a progression to traditional fusion if clinically necessary.
Vertebral Body Tethering
· Less invasive, key hole surgery
· Less surgical hardware
· Curve reduction dependent on curve flexibility
· Less blood loss and risk of infection
· Can be used pre-skeletal maturity
· Spinal Motion sparing
Spinal Fusion Surgery
· Highly invasive
· Requires disc fusion with associated complexities
· Extensive surgical hardware
· Can achieve significant curve reduction in rigid curves
· Requires self-donated blood transfusions
· Requires growing rods prior for younger patients
· Significant decrease in spinal motion
· Known high long-term complication rates
Comparing the hardware
Dr letter appendix
WE NEED YOUR HELP TO HELP JAMES !
PLEASE DONATE, PLEASE SHARE
"James‘ x ray looks great. Pretty much a straight spine. With this x ray I would actually be fine to skip the 3 months x ray and get the next one 6 months after surgery." - Dr Trobisch
With your support you have enabled James to engage with the future without the structural disability and the pain he was constantly enduring. Which would have only got worse with time! James will need to be mindful through his life and have check-ups to make sure all is in order but he has the best opportunity to lead a normal life that the medical world can offer given his condition and that's all on you.
Since week 3 post op James has been revising for his GCSE's and seeing tutors to fill the educational gap his condition caused.
The family have taken a sigh of relieve and feel that a huge weight has been lifted allowing us to engage in the world without the worry.
You are also responsible for helping another young man called Luke who was having a horrible time with the same condition who's fund raising had stalled . We were able to make a sizable donation to help him as your support for James had exceeded James immediate needs. Luke had surgery a couple of weeks ago and is making good progress.
You reached out to help when we were at a very low point and we are eternally thankful to you.
Take a moment - you did an amazing thing… smile :o)
Blessing and Best wishes to you all.
Wayne, Christine, James & JoJo
Today is his first Osteopath session with Carl Todd (the best oestopath I have ever come across) to help James realign his body now his lumbar is straight. In two weeks time we will have the next xray to determine how well the VBT tether has held... fingers crossed.
I will let you know how ther XRAY turns out.
Again our sincerest thanks to all of you that reached across the world to support James in a moment of need.... THANK YOU.
On the x-ray comparison, the right hand one taken three days after surgery we can see are massive reduction in the lumbar (lower curve). The upper curve is where his spine is compensating for the lumbar curve and will settle down as James body gets used to his new lumbar position and he recovers from surgery. In six weeks we will do a follow up to see how it has settled down.
This life changing surgery would have not been possible without your help. You have made an amazing thing happen.
From all of us sincerely Thank You.
It has been a crazy ride for James and the family these last five years. Our sincerest thanks to all of those of you around the world that have reached out to help James.
With your help you have enabled James to have a timely intervention giving him the best chance of a near normal future. It is very kind of you.
We will keep you up to date on how James get on.
Wayne, Christine, James & JoJo