Please Help me recover from CCI

Hello everyone! 

My name is Connor Edwards and I am 26 years old

I recently became disabled by a minor neck injruy. Sounds impossible, right? Most NHS doctors will tell you it is, but for people like me who have a connective tissue disorder called hypermobile Ehlers-Danlos Syndrome (EDS), it is a terrible reality. EDS can affect any sort of connective tissue. In my case, it has affected the ligaments that connect my head to my neck and hold my neck together, creating a condition called craniocervical instability or CCI. I am now like a bobble head doll, unable to carry the weight of my own head and suffering with chronic pain and a myriad of neurological symptoms caused by compression of the brain stem which passes through the critical junction of head and neck such as dizzyness, blackouts a 24. 7 headache, constant pain, crushing pain, Nausia . Ligaments of the neck DO NOT heal easily, and without intervention, CCI tends to progress, ultimately placing patients at risk of paralysis or death. That is the bad news. The good news is that there are interventions that can heal the ligaments, remove the symptoms and return me to a functional normal life. 

The nhs do not cover or treat instability of the spine and insurance won't cover it either, my skull down to my mid back is collapsing 

I have been unusually flexible all my life, which was great when I was a young gymnast. Most people think that flexibility is a good thing, but what most people do not know is that unusual flexibility is a sign of defective connective tissue in the joints, very often the ligaments, which connect bone to bone and are absolutely critical to spinal integrity. I am only 26, and since the age of 17, I've lived with back and neck pain which I overlooked as muscular. I now realize that although my muscles are healthy enough, the ligaments holding my head to my neck and my spine bones to each other have become weak and unstable. Instability anywhere in the spine is painful and risky because it's so close to the spinal cord. However, when the instability is at the junction of the head and neck (craniocervical junction) the problem becomes critical because the brain stem passes through a hole in the skull through the first two joints of neck (called the atlas and axis). When the atlas and axis are unstable, they move out of place and bend and compress the brain stem, causing extreme neurological symptoms and putting the person at risk of paralysis or death because all bodily functions are managed by structures within the brain stem. I have instability throughout my spine, but especially at the craniocervical junction. 

The symptoms I deal with everyday are loss of feeling in my arms, an extreme headache that never goes away, my head feeling too heavy to hold up, pain in all the extremities, heart palpitations, loss of hearing, vertigo and dizzyness, jaw pain and more. Without treatment, CCI almost always gets worse over time. Without effective treatment, my life is over at the age of 26. With treatment, I can recover, lead a normal life and dedicate myself to raising awareness about CCI and helping others with this horrific condition. Without treatment, I am likely to become bedbound and the condition onyl gets worse 

Although this condition is surprisingly common and treatment is straightforward and effective, it is underdiagnosed and poorly understood within the medical system. Most doctors do not understand that patients with highly stretchy ligaments can become very seriously injured without a dramatic trauma such as a heavy blow or severe whiplash. They don't understand that mild to moderate injuries to the ligaments of the neck can develop into severe injuries over time. Currently, the NHS offers no treatment for CCI and do not have the expertise or the correct imaging techniques to recognise it. Fortunately, CCI is well understood by a handful of neurosurgeons and regenerative medicine doctors in private practice who successfully treat it every day. 

Perhaps the most famous case of CCI is Jennifer Brea, who at close to my age, while a PhD student at Harvard, was misdiagnosed with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome. 7 years later, she was properly diagnosed with CCI and fully recovered with treatment. Her story during the years of misdiagnosis is described in the documentary Unrest and her CCI diagnosis and recovery is documented on her website http://www.jenniferbrea.com/

I personally know many people who spent years getting a correct diagnosis of CCI who have gone from severe debilitation to full recovery with appropriate treatment, and I know that I can be one of those people! 

At the moment I have to use an aspen vista to even hold up my head as its incredibly painful without it and I don't manage very well 

At least 1 in 5000 people have hypermobile EDS, although based on the fact that EDS is a spectrum disorder, this is likely to be an underestimate. At least 1 in 15 people with hypermobile EDS go on to develop CCI. I am quite confident that I have CCI because of my hypermobile EDS, the nature of my symptoms and the obvious and direct connection between symptom onset and overstretching my neck in the mistaken belief that my neck muscles were too "tight" (many CCI patients have become severely disabled through believing or being told by medical professionals that they just needed to "stretch" and "mobilise" their neck muscles). However, I need the correct imaging in order to receive treatment. Most MRI scans are done with patients lying on their backs with a neck rest, which neatly lines up the joints and makes problems between the joints very difficult to see. Therefore, experts in CCI typically require MRI scans with the patient in a range of upright positions which reveal the misalignment of the joints when stressed by the weight of the head. Unfortunately, the NHS does not offer upright MRI, and though they are available privately, the cost is a minimum of £1,800, which I do not have and I am unfortunately too disabled to earn. 

Even the surgery to fuse your skull and neck together costs alot of money and no nhs neurosurgeon will attempt or so this surgery in the UK, it's a surgery you have you raise money for and go to Barcelona to have done

CCI is most effectively treated with therapeutic injections that help the ligaments to heal.

These injections must be done into tissue that surrounds the brain stem and spinal cord, they require very specialist expertise and imaging equipment. The least expensive option for me is to receive platelet rich plasma injections at Regenexx in London, which currently costs a minimum of £2,500, I need them in my neck and back and that's not including travel costs. I know this is a big ask so even 1 pound would be a great help, I just want to be able to function like any normal 26 year old and not lose the rest of my life to a condition that has been neglected and misunderstood by our national health care. Any donations would be massively appreciated, and even if you can't donate please share to anyone you know. EDS and CCI need more awareness, and you and I can make a difference to thousands of lives! 

Thank you very much, 

Connor x