Help Jessica with the testing she needs

Overview In October 2019 I was diagnosed with two conditions of the cervical spine, cranio-cervical instability and atlantoaxial instability by a neurosurgeon who specialises in these conditions. There are only a handful of surgeons in the world who specialise in this field, with the only one in Europe based in Barcelona. This surgeon has diagnosed me remotely through taking a detailed clinical history and studying images from an upright MRI. Below, there is more information about what these conditions are and what they mean for me. The next step for me would be to follow the strong recommendations of the neurosurgeon and meet with him for a series of tests alongside a face-to-face consultation to determine the extent of the issue and how necessary/beneficial surgery would be. These tests are as follows: Cineradiology - Similar to a digital motion x-ray, this imaging is used to confirm the extent of instability in the spine. It is simply an x-ray in motion in flexion and extension of the spine. This is perhaps the most important test as the neurosurgeon suspects from my upright MRI that I have subaxial instability from C2-C4. Knowing the extent of my subaxial instability is important as it directly impacts treatment options, and this test is needed to confirm the diagnosis. MRV  -  The MRV is a angio/venogram (with contrast) of the brain and neck looking for possible stenosis or compression of any of the veins or arteries (especially the jugular veins). This is important as vascular stenosis can be a comorbidity or consequence of CCI and AAI, which I have been diagnosed with. If I have any compression, it may be able to be treated by a specialist here in the UK, which could alleviate symptoms - so it is important to know if I have it. Ophthalmologic exam - Similarly, the ophthalmologic evaluation checks for signs of papilledema or damage to the optical nerve from intracranial hypertension. Again, intracranial hypertension can be treated in the UK so this knowledge would be immensely useful for tackling my health moving forward. The results of these tests, and my original imaging and questionnaires would then be discussed in a face-to-face appointment. So far, I have been diagnosed by the neurosurgeon solely on the measurements of my MRI combined with my clinical history. A face-to-face appointment is important to confirm these diagnoses, discuss surgery and whether it is necessary, and ask any questions I might have.    To this end, I am planning a trip to Barcelona in April and I have outlined a breakdown of the costs of the trip below:   Cineradiology - €350 MRV - €700 Ophthalmologic exam - €220 Consultation - € 250   Total costs of tests and appointment - €1520, or approximately £1300. Additionally, we are also asking to partially crowdfund some of the costs of accommodation. The final accommodation isn’t booked yet but the cost is approximately £200 a night, with four nights total.   Total costs of accommodation = £800  This means that we are asking for £2100 in total, with myself and my family paying for the remainder, including flights, the rest of the accommodation, transport, travel insurance, food, etc.   Background information   In 2011 I developed Myalgic Encephalomyelitis, a multi-systemic but primarily neuro-immune disease which has absolutely devastated my life. My health has declined a lot over the years; I had to give up schooling, became a wheelchair user in 2015, am unable to work, and now find myself bedbound/housebound a lot of the time. The symptoms are numerous and debilitating. I am in severe pain daily, my cognition is profoundly impacted, my muscles are significantly weakened, and my gastro-intestinal system is affected. I have developed co-morbid conditions, including a yet to be diagnosed heart condition. This is just a fraction of what I face.   The crowdfunding campaign I did in 2015 to get my wheelchair absolutely changed my life for the better, and I would argue saved my life, given that I haven’t attempted suicide since I’ve had my wheelchair. I was able to take up archery, start several voluntary jobs which contribute a lot to society, become a lot more independent on a daily basis, travel the world, and save myself a lot of pain and speed of decline. However, my condition has still deteriorated, albeit a lot slower than it would have without my lifesaving wheelchair.   For many years I had resigned myself to the fact that my disease is incurable, and in my case, progressive. However, in 2019 it progressed to be the worst it’s ever been and I lost a large amount of the little functionality I had left. This has left me in a dire place mentally, and at high risk of suicide. I started to do a lot more research into potential treatments and causes, most of which I had given up on years ago because of the prohibitive costs. I found that a small but growing subset of ME patients are finding that they have structural issues that cause symptoms similar to or the same as their ME symptoms. In October 2019 I found out that I am part of that subset, having both CCI and AAI as well as suspected subaxial instability. CCI in its most basic sense means that my head isn’t being properly supported by my neck, causing brainstem irritation and possible compression. As the brainstem is a vital component of a lot of bodily functions, this causes a whole host of symptoms, including tachycardia, heat intolerance, polydipsia, chronic fatigue, neck pain, facial pain, muscle weakness, dizziness and vertigo, and many others. AAI means that when I turn my head left or right, two of the uppermost vertebrae in my spine, the atlas and axis, are subluxing, which means a partial dislocation. As you can imagine, this causes many symptoms too. Whether the CCI is a cause or effect of my ME is unknown. It could be that the CCI is causing all of my ME symptoms, as in the case of Jen Brea and Jeffrey Wood (see below), or it could be that the inflammation and tissue degradation that is part of my ME has caused the structural issues I am now facing due to my ligaments weakening. However, either way it needs to be addressed, and treating it could potentially improve some of my symptoms and give me more of a life. In order to treat it, we first need to know the extent of the problem, hence the testing.   My life as is stands feels very unliveable. I am currently unable to partake in most of my voluntary jobs. I have had to give up archery, which was the sport I took up after having to give up cheerleading. I am slowly but surely losing everything that makes my life feel worthwhile. If I can regain at least some of my health, even to the level I was three years ago (still disabled), that would be lifechanging, and saving. I am doing everything I can to make this happen, including private treatment for my ME in the UK. The CCI testing is a large and crucial part of the jigsaw.   Unfortunately, none of this is available on the NHS. While the NICE guidelines are still under review, they currently promote CBT and GET as ‘treatments’ for ME, despite every ME expert in the world explicitly stating that this is harmful. I credit GET for the decline in my health that led to me becoming a wheelchair user. CBT is not an appropriate treatment for a neurological disease, though psychological support is crucial in dealing with such a devastating illness. I am receiving this mental health support on the NHS which I am immensely thankful for. Any treatment to address the underlying disease process and its effects (perhaps including the CCI) has to be done privately. I have briefly outlined below why I need help with this.   If you would like to read more about CCI, please follow the links below:   https://www.me-pedia.org/wiki/Craniocervical_instability https://centenoschultz.com/craniocervical-instability/ https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71 https://www.mechanicalbasis.org/     Why I need to crowdfund Due to the severity of my conditions I am unable to work and therefore my only income is disability benefits. A significant chunk of this contributes to my social care package which I use to employ a PA, and further money goes on monthly medical costs. So far I have been funding these investigations through money left to me by my Grandfather when he died, but this money is dwindling rapidly as I have spent a substantial amount of money on the Upright MRI and consultations alone. I need the rest for treatments in the UK, the cost of which is enormous.   How your donation will help   Any amount donated will help me get the testing I need to determine the extent of my CCI and AAI, which is the first step before I can undertake any treatments for it. Future treatments (which I will likely also have to crowdfund for) could give me my life back. What does that look like? It means me no longer being intensely suicidal every day. It means me being able to go back to my roles as a voluntary support worker for survivors of sexual violence; supporting some of the most vulnerable members of society at a local foodbank; and continuing my work as a local parish councillor. It also means me being able to get more involved with the activism that I am passionate about, and continue hobbies and passions that make my life feel enjoyable.   If I am lucky enough to raise more than the amount I am aiming for initially, I will put this towards the cost of treatments, both for the CCI and ME, as these cost a significant amount of money and I am rapidly running out of resources, but desperately need the treatment.