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With slow and outdated support from the NHS and funding denied by his private health insurance company we need to raise £40,000 by April/May this year, so that James can under go an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
His next hurdle is to sit his GCSE's which he will sit two weeks after going back to school. James wants to do 4 A levels' - Math, Physics, Chemistry and Ancient History so he needs to get GCSE 6's in all relevant topics - which he on the way to meet/exceed but with surgery landing just eight weeks before and being out of school before surgery and in recovery it is all a little tricky so we are arranging a comprehensive home revision program with the help of some private tutors so James is able prepare the best he can through his recovery.
You can see James's latest Xray, taken when visiting Dr Trobisch in Germany last week. From this the Dr can tell that his window for optimum surgical recovery is closing. His growth (Risser) score has increased to 4 out of 5. At 5 he is fully grown with no more growth and therefore less optimum recovery for the spine. So getting surgery quickly is very important.
With a six week recovery period James will just have time to recover and then sit his GCSE's. Not the most desirable of situations but we are looking at additional 1:1 coaching to try and fill the gap.
Our thanks to all of you that have reached out and are making this possible for James.
The power behind this type of fund raising is social media. You are the engine driving that power so please share this with your communities so that they can consider helping James.
Dr Trobisch has agreed to take James on as a patient and we are looking at an operation near the end of March.
James Xrays from yesterday show that his window of an optimum opportunity is closing so it is great that the option for the operation at the end of March exists.
Dr Trobisch currently performs 2 VBT operations a week and has done so since his hospital authorised this operation May last year.
Thankfully the initial fund raising goal of £40k will just about cover op costs and expenses i.e. all the costs for the op in Germany whereas it appears though yet to be confirmed that the UK op costs are looking much near £52K plus expenses. I will update you as this firms up.
Again thank you all for your help... today we have had an abundance of help from colleagues of Christine at Nationwide... thank you !
Please share this on if you can... James's future is looking bright... we have the surgeon, the hospital and a penciled in window for the operation and with the help you have already shared and the help to come James will be walking tall very soon.
We hope to have a few exciting announcements in the next week or so as matters unfolding in the back ground firm up.
If you can please share this, even if you have already, as sometimes a little reminder can be helpful.
Our sincerest thanks to those that have reached out to help James.