Story
HELP OUR DAUGHTER LARA STRONG HAVE LIFE-CHANGING SPINAL SURGERY
Hi, we’re Nicki and Richard Strong and we’re crowdfunding because our daughter Lara, aged 27, is extremely ill from compression of her brainstem, spinal cord and veins in her neck. Her symptoms started when she was 11 and have gradually worsened over the last 16 years despite every effort to improve. She needs help to receive life-changing - and possibly life-saving - spinal fusion surgery in Barcelona within 12 weeks.
Please read her story below:
Hi, my name is Lara. I am mostly housebound and often bedbound, only leaving the house for medical appointments or to see friends or family for a few hours about once a month, requiring a neck brace on car journeys. In between, I am unable to stand or even sit upright for very long without the worsening of all my symptoms, such as: severe head and neck pain and pressure, muscle tremors, sudden muscle weakness and semi-paralysis, dizziness, vertigo, nausea, blurred vision with short periods of total vision loss, light and sound sensitivity, tinnitus, numbness (particularly down my left side), exhaustion but inability to sleep, difficulty swallowing and breathing; the list is endless. All these can worsen if I use even a small amount of energy to do anything physical or cognitive. Misleadingly the ramp-up in symptoms can be delayed, and kicks in one or two days after the “activity” but then can last weeks or even months.
Following a minor car accident when I was 11, I started to have pain in the back of my neck and head, then further symptoms appeared such as dizziness, constant thirst and air hunger. By 14 I had to drop out of the netball and football teams I loved. School became a struggle, and at I6 my health declined further when I was hit by glandular fever (aka mononucleosis or Epstein Barr Virus). I began blacking out and collapsing, particularly when standing for more than a few minutes.
At age 17 I was diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) shortly after my brother had been diagnosed with ME/CFS (another similar story); told to think positively and do graded exercise, which I tried time and time again. I became more and more sick.
In denial of being ill and craving independence, I pushed myself to go to uni and despite a huge struggle, completed a Law degree largely from bed. During this time I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) and prescribed medication which helped me survive (by getting more blood up to my brain) but did not stop the overall deterioration.
That was 5 years ago. Since then I have helped to raise money for the ME Association; volunteered online for ME Action, helping to organise a “Millions Missing” protest in Oxford to represent ME sufferers stuck at home or in bed, invisible and “missing” from life. As a result, my condition again went downhill to the point I became bedbound 23 hours a day, leaving it only to crawl to the bathroom.
Then early this year, after many years of searching for answers, I was diagnosed with hEDS (Ehlers Danlos Syndrome hypermobility type). EDS is a connective tissue disorder which affects collagen and for me it seems particularly in the ligaments around my neck and spine, making them loose and unable to support and protect my brainstem (the lower part of the brain) and spinal cord. As a result my skull has been sinking on to my neck compressing the brainstem.
Due to this ligament weakness (which unfortunately cannot be fixed with diet, supplements or exercise), I have developed Cranio-Cervical Instability, Atlanto-Axial Instability, Sub-Axial Instability and Superior Odontoid Migration (SOM); also severe compression of the jugular veins in my neck which is blocking blood flow to my brain. SOM means the second vertebral bone called the odontoid peg is now too close to the brainstem due to my skull sinking onto my neck and spine. If/when this bone impinges on the brainstem - MRI shows it is currently 1mm away - it can cause loss of breathing, coma and/or death.
I require an operation privately in Barcelona to make my head, neck and spine junction stable and to remove bone which is compressing my veins. This involves raising the skull and fusing the vertebrae from C0 (skull) to T1 (base of the neck). Whilst this means I will never be able to turn my head from side to side or up and down again, it will stop neurological compression and damage, giving me the best chance of significant improvement. Without this surgery I may stop breathing, (which I have already started to struggle with), become paralysed or worse.
Unfortunately, there is no neurosurgeon in the UK experienced in performing this operation on people with hEDS or hypermobility. The closest and most “affordable” is in Barcelona.
My brother has also been diagnosed with a similar group of conditions and will probably need surgery too. This will put huge strain on my parents who have some savings with which they have been supporting us, but not enough - another reason why I am asking for anyone in a position to help to do so. If you are unable to donate, thank you for taking the time to read my story, and please consider sharing this page.
Thank you so, so much. I can't possibly thank you enough for giving whatever you can. If I’m able to have the surgery and in the hope it does improve my ability to function, I will do my absolute best to have a positive impact and help others in a similar situation in any way I can, as you have all helped me.
Thank you again.
Lara x
NB All donations will be used only for surgery and medical costs.
See Jen Brea and Jeff Wood’s stories of remission following surgery for Cranio-Cervical Instability:
https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71
https://www.mechanicalbasis.org/
See below for Karen Scott's symptom improvement (page 4) within 6 weeks of CCI surgery in Barcelona:
Further information on Cranio-Cervical Instability
https://www.epainassist.com/back-pain/upper-back-pain/what-is-craniocervical-instability
Quote from a paper by the specialist neurosurgeon, Dr Fraser Henderson:
"The presence of cranio-cervical instability is thought to cause pain and neurological findings through three mechanisms: stretch of the lower cranial nerves; stretch of the vertebral arteries and deformative stretching or deformation of the brainstem and upper spinal cord. Neurobiological evidence of deformative stress is manifested in clumping of the neuro-filaments and microtubules and loss of axonal transport [26], the formation of axon retraction balls similar to those seen in diffuse axonal injury [which occurs in traumatic brain injury] [27], pathological calcium influx [28], and altered gene expression [29]."
