If I don’t have surgery, then my curve is already at a stage where it will carry on increasing, particularly when I grow. As a teenager, I am doing a lot of this at the moment! I also have a large rotation of my spine and as my curve increases my rib cage can start pushing against my heart and my lungs causing me problems with my breathing as well as causing me lots of pain. In addition to this I have developed a hump on one side of my back which will again only increase over time.
As my curve is mainly in my lower spine, I would need my spine fused as low as vertebrae L4 which is where most of the spine’s flexibility is. Having my spine fused so low would mean that my flexibility and day to day movement would be severely limited and I would only be able to bend from my hips and twisting would be difficult too. Lots of people who have had fusion, end up with lots of problems later in life and need more of their spine fused and can be in a lot of pain. I don’t want this to happen to me.
However, we have found that there is now an alternative to fusion called Vertebral Body Tethering (VBT) but it is not available on the NHS yet.
VBT uses a tether instead of a rod. It is less invasive, has a shorter recovery time and would enable me to maintain my flexibility as no vertebrae are fused together. This gives me the best chance of living a normal life moving forward which is all I want to do – I want to just enjoy being a teenager with my friends.
The problem is that VBT is only available to us abroad and it relies on me having some remaining growth left in order for the tether to work. Ultimately, I need this surgery by August, so time is running out for me!
(Follow my journey at https://www.facebook.com/Fixing-Avies-Wonky-Spine-109688177863991)
Now for more technical bits from my parents…..
Avie is such a bright and bubbly 14 year old with such a positive attitude to life. She is a gentle, kind-hearted, conscientious and caring young lady who would do anything for anyone. The thought that she would be limited in any way has been very hard for us to accept.
Prior to this, we had very little understanding of what Scoliosis was. Now we are living and breathing it and are in a race against time for our precious girl to have what she calls her “wonky back” fixed.
Whilst fusion is a proven technique it means that the flexibility in the spine is lost. The discs are removed, a metal rod is attached to the spine to straighten it and a bone graft is used to fuse the vertebrae together, essentially turning the spine into one bone. It is a long and highly invasive surgery and can take up to a year to recover. It is a permanent solution that cannot be undone but is likely to need further revisions in later years due to disc degeneration and arthritis in the areas above and below the fused area. This could result in Avie needing to be fused to her pelvis, limiting her movement even further. No 14 year old should be facing that possibility.
After hours of research, we found out about VBT. This is a far less invasive surgery that has a much quicker recovery, is an anterior entry (in the side) rather than a posterior entry (in the back) and will mean that Avie retains full flexibility. Also, unlike fusion, VBT can be undone if at all necessary, which would mean she would not be ruled out for future advancements in spinal corrective surgery should she need it for any reason.
We have seen the only surgeon in the UK who offers VBT privately as it is not available on the NHS. He has told us he thinks that VBT is the best option for Avie but to get it done privately in the UK it would cost in the region of £60,000, which is well beyond our means. The NHS are currently carrying out a 2 year clinical trial on VBT in the hope it will be a potential surgery that could be offered routinely. After meeting with the surgeons leading this trial in London, we were devastated to find that due to Avie’s rotation and growth stage, and the strict parameters of the trial, she was not eligible to be part of it. The high cost of private surgery and VBT not being offered on the NHS led us to research if the surgery can be carried out elsewhere. After consulting with surgeons in Turkey, Germany and the USA we have found that the procedure is offered abroad and that VBT is the best option for treating Avie’s scoliosis.
We have been incredibly lucky to have had Avie accepted as an international patient with Shriners Children’s Hospital in Philadelphia. They agree that she needs surgical intervention and that VBT would be the best option for her, however there are a lot of other factors involved before surgery of this kind can be agreed. We have an assessment booked with them in person in May. We are currently trying to get permission from the US Embassy to fly to Philadelphia to have the assessment and have confirmation of whether they can offer Avie the surgery or not. This is proving an extremely stressful time to be going through this experience as currently it is illegal to leave the UK unless there are strict extenuating circumstances and U.K. citizens are forbidden to enter the US apart from in extreme situations.
Remarkably, Shriners is a charitable hospital and will not charge for the surgery, however the costs involved in getting to the US, accommodation whilst we quarantine (due to Covid) before the assessment and then the same costs involved to return for surgery at a later date where we would need to go for 6 weeks are understandably large. Furthermore, we would be forever indebted to this incredible hospital and would want the opportunity to pay back so they can continue offering such amazing pioneering care to children from all over the world. They rely on donations to keep operating.
If Avie is not accepted for surgery in America or if we are not granted permission by the US Embassy, then she has been accepted for surgery in Turkey and Germany, but this will still be at a cost of over £40,000 which would be a huge amount of money for us to cover and would be beyond our means.
We are an ordinary hard-working family of 5 and it is so upsetting to not have the money to give our daughter the best chance. We are also a very private family so it goes against everything within us to reach out for help, but we will also do absolutely anything for our children, so will do whatever it takes.
Facing this during a pandemic whilst also in lockdown has been incredibly hard on our whole family. We have had to travel to London on 3 separate occasions to try and ensure no stone was unturned within the UK. Now we are in the middle of a fight to get her to a country that could offer her a solution to this nightmare. We are having to do things we never thought we would have to do and we are emotionally exhausted, but Avie is worth it all.
But we cannot do it alone, we need help and support in any way you can. We are not asking for handouts, but we are starting to plan various fundraising challenges that we would absolutely love for you to support us with.
Bryn (Avie’s Dad!) is going to do a sponsored “I’ve got your back” 30/30 challenge in April, where for 30 days he will carry 30kg in the form of a weighted backpack. He will be able to put the backpack down at the end of each day and walk away, but Avie cannot walk away from her condition. As a school teacher, he is also hoping to raise awareness of this condition amongst the very people it most commonly affects. He hopes to educate his students and raise awareness as early detection of the condition significantly increase the treatment options available.
Avie’s “Uncle Gaz” is going to compete in the incredible Atlantic Coast Challenge in October where he will run 3 marathons in 3 days along the coastline in Cornwall!!! What a huge mind-blowing endurance – again mirroring the endurance that Avie herself is facing with surgery.
To follow Avie’s journey and see updates in our upcoming fundraising endeavours, please follow https://www.facebook.com/Fixing-Avies-Wonky-Spine-109688177863991
- Warren Nienaber
- Hannah Griffin
- Dave Brock
- Jeremy Retford
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