Lifesaving Neurosurgery for MK

The Short Version:

(Keep scrolling for the full story after the intro below)

I'm having daily seizures and breathing difficulties due to a structural issue with my upper spine, which has resulted in the compression of my brainstem and blood vessels supplying my skull.

I need specialist neurosurgery of a type the NHS doesn't offer, in Barcelona, as soon as possible.

As the cost is far beyond my family's means, I'm asking for wider help. Thank you.

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Update 2 October 2022: Fundraising Reopened

My neurosurgeons have proposed a second operation on my head and neck which would aim to replicate and make permanent the effects of the Minerva neck and torso brace, which has restored a huge chunk of my healthy functioning, temporarily.

In cases like mine, where the body's connective tissues aren't as strong as they might be, fusing the bones of the cervical spine (neck) together is not a satisfactory solution to support an overly mobile skull weighing an average of 5kg / 11lbs.

The original proposition to fuse c0 (skull) to c2 (the relatively light and flexible top two bones of the cervical spine) – a less invasive, 'short' fusion – will likely not be effective in my case.

We must fuse the bones from skull to t2 (second vertebra of the thoracic spine: the much thicker, sturdier and less flexible part of the spinal column which begins at the shoulders) in a 'long' fusion; encouraging them to grow together into one stable column of bone supported either side by a scaffold of metal, with a stabilising plate fixed at the back of my skull.

While I trust the advice of this experienced, specialised surgical team absolutely and have total faith in their competency to carry this out, it will mean a much larger operation than we'd prepared for: from the expected two, to nine bones in my spine fixed together with my skull; a multiple times harder recovery, and much greater level of disability long term from the resulting loss of range of movement in my head, upper body and neck.

The alternative – to aim to prolong my life by wearing the Minerva brace permanently and continue to decline all the while – isn't acceptable to me, and I owe the people whose lives are linked to mine more than that.

In my heart I know there's no other choice: in order to make the best possible use of the resources available (including my own health / energy) and all that everyone has invested in me the last three years, this is the right decision.

I've spoken to loved ones, and I'm going to accept the operation being proposed to take place on the 28th of October.

A larger operation means extra expense. My four wonderful friends in my funding support group have agreed to support me in extending our collective fundraising totals by around an additional £15,000; to cover the additional hardware, bone graft, extended time in the operating theatre / ICU, and for the extra weeks' recovery at the assisted care facility this will mean.

I'd like to ask you once again for your support in donating and spreading my request for help.

All donations made beyond the original goal of this GoFundMe (£27,258) will go towards the new expenses mentioned above.

All donations made via the sister campaign toward the grand total there (being adjusted in the next few days) will do the same,

Thank you once again: I wouldn't be here, weighing this decision, without you.

Hopefully, and with Love,

MK

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The Long Version:

(Personal message and links to more info at the end)

Here is my story, thank you for reading.

In 2015, I started slowing down. I was learning ecological construction methods while volunteering at self-organised community projects: rampaging around forests, messing about on roofs; having a whale of a time.

That winter, it began to get harder to get up in the mornings. I became irritable and less able to participate in collective life.

By early 2016, I knew something was wrong. I'd travelled to stay with my girlfriend. We'd stopped volunteering and come off the road to set up a quieter life for ourselves as I continued to feel unwell.

In autumn that year, while returning to visit family, I found myself constantly out of puff: meeting a common incline on cobbled streets, I would become lightheaded while trying to reach the top. But seeing no reason for it, I pushed through.

By spring 2016, I wasn't so able to leave the house anymore: even short exploratory urban nightwalks – of the kind those of you who know me know I always favoured – were becoming like mini marathons.

As the year waxed on, I became stuck indoors; sitting propped up in bed or in an armchair, watching the street from my window like a bored house cat. My body ached. My joints complained. My limbs refused to comply. Simple tasks like hanging out the laundry became like a session lifting weights.

In the summer of 2017 I made what would be my last trip out of the house not to a doctor's surgery: I attended a book fair at a social centre a few hundred metres from my house.

I remained in an armchair throughout, and all of a sudden the world took on a gentle, meandering horizontal clockwise spin. This was to be my new permanent outlook on the world.

The next two and a half years were a parade of doctors' offices: as pain, discomfort and a pervading sense of weak, fluey sickness increased and I was obliged to hand over all outside errands and household tasks to my partner or parents and retire to bed, I received a string of negative diagnoses.

Every '-ologist' you could think of shook their head and said, "it's psychosomatic", "try exercise", "weight loss", "psychotherapy"; "try getting a job". I missed my job badly. Missed walks in my neighborhood; riding my bike through the forest and by the lakes. Visiting family and friends. I was fatigued all the time, but at least I had my online world. 

Then in summer 2018, things took a turn for the worse: my girlfriend was away unavoidably for a month and I had mainly to fend for myself for the first time since I began feeling ill.

The sudden exertion of resuming household tasks began to bring on debilitating headaches: the sensitivity to sound and light I'd increasingly been experiencing intensified.

I would lay in the dark with the curtains drawn against the summer light, flinching at every ambient sound. The noises of the suburban neighborhood became unbearable.

At the end of the summer in 2018, I developed a low grade fever and terrible upper abdominal pain. After multiple visits to A&E and different specialists offered no answer, only antibiotics; I spent Xmas and New Year of 2018 lying flat on my back in bed: ribcage on fire, grimacing at the ceiling and wondering what the heck had gone wrong.

By the end of the year, I stopped being able to look at a screen: the movement of scenes on TV, the fast cuts of a film, or unexpected flashing lights would trigger a feeling as if I were stuck inside a washing machine on spin cycle.

I would lose my sense of where my body was in space, feeling as if I were being flung around in loops, and my eyes would flick back and forth rapidly. This was vertigo and I hated it more than anything else so far.

I had developed intense tinnitus in both ears: an orchestra of sound. Rounding corners in the flat became an obstacle course as I misjudged distances and I began to stagger when getting up suddenly from bed.

My paint by numbers paintings, little hand drawn comics about daily life, and sewing projects sat on my desk, unfinished. My vision began to flash and strobe and I developed a dreadful, ominous pressure behind the eyes. 

My online world – my solace – disappeared from view: email correspondences dwindled and I said my goodbyes on social media, now only able to steal glances at my screen before a terrible sharp pain would begin in my inner ears, forcing me to curl up in a ball, eyes closed, and lay still. 

My girlfriend decided to move house. There was black mould in all the rooms of the flat and I had developed a barking cough, wheezing and other allergy symptoms. I couldn't lift a finger to help pack: friends helped me into a caravan where I waited out the day, until all was done.

The new place was quieter, with a little balcony overlooking a patch of grassland by the train line;

I lay on my side and watched the birds. A few weeks of respite from the mould and noisy neighbourhood renewed me a little.

In the winter of early 2019, I got in to see an ear nose & throat specialist, who gave me my first useful piece of news: after an afternoon of audiometric testing performed with electrical wires attached to my head and much beeping and blooping and flashing lights, he informed me that my issue was not in my inner ears, "It's in your neck. Something's disrupting the blood flow in and out of your head".

I went to have an MRI of my neck, but it came back all clear. I remained puzzled, and at this latest dead end, was left once more without doctor support.

Meanwhile back at home, a close family member became acutely unwell. Unable to manage the bustle of airport security and cabin pressure of a flight, I set out by train and by boat, for a thirty six hour journey home. 

As the trip approached, I began to have a flare of the upper abdominal symptoms which had plagued me throughout the second half of 2018. I travelled feeling as if my rib cage were filled with concrete: freshly poured, hardening and hot. In the ship's cabin, I sweated and writhed as we trundled over the North Sea. 

A few days later I arrived home, and thankfully my family member soon came home from hospital, but after suffering several weeks of severe gastric upset myself, we then switched places.

Over the summer of 2019 I spent two weeks in a hospital a couple of hours away from my parents' home, having emergency gallbladder removal surgery, then being treated for sepsis and a surgical herniation which followed.

I arrived home diminished. Over the next few months I would lose over five stone (32kg) in weight. This process continues to date.

My liver began to hurt terribly, keeping me pacing the room through the night in a cold sweat and the area surrounding my pancreas began to grumble. It felt as if my organs were shutting down.

The symptoms of cranial pressure and pain increased, and along with them came problems with hearing, vision, mobility, digestion, balance, heart rate and cognition.

My heart rate would rocket from a resting measurement of 60-75bpm, to 130+ when standing: blood seeming to pool in my lower limbs, turning them purplish as my blood pressure dropped, leaving me dizzy and blue-lipped; sweaty and faint.

At night my heart rate would dip into the 50s. A type of tinnitus called pulsatile tinnitus (where you hear your own heartbeat constantly in your ears) meant I would lay there listening to it sloshing through my head like a washing machine drum – slower and slower – and wonder if it was gonna stop.

I began to use a walking stick to get to the bathroom. Showering became an ordeal. I began slurring sentences, forgetting words. My mind would go blank in the middle of a thought process. I was weepy and confused; stumped by simple tasks.

My light sensitivity got such that the curtains stayed drawn through the day. My sound sensitivity escalated so that some days I couldn't bear anyone in the room with me; even moving carefully, whispering.

Processing conversation became like listening to the horn section of an orchestra, blaring out a discordant tune. Some days even understanding the gentle voice of the audiobook I had running constantly as company became like listening to speech in a dream: I could no longer understand the words.

I was physically separated from my partner of six years, my friends and even the family with whom I shared a home, as my energy to interact with the world outside my mind drained away. My world was diminishing – soon I felt I would be completely alone in the dark.

In October this year (2019), I did something radical: I began speaking to a private neurosurgeon.

I had discovered earlier in the year, around the time of the ENT pointing to something amiss in my neck, that my symptoms matched those of several other patients who had undergone a highly specialised upper spinal operation, and made quite remarkable recoveries. 

These patients had lax, weakened ligaments in their necks, which could no longer hold their skulls in place. The skulls of these patients would move abnormally on their axes, or sink from their correct positions; crushing the brainstem and stretching or compressing vital structures like the spinal cord and the jugular veins. 

The reasons for this were several: preexisting connective tissue disorders meaning the joints of the body – including those of the spine and skull – were overly mobile; contracting ligament-weakening viruses like Epstein Barr (EBV - glandular fever / mononucleosis), side effects of antibiotics, exposure to environmental toxins, or trauma to the head and neck. 

I've had overly flexible joints since I was a child, as has one side of my family. This caused me temporary mobility problems from time to time, but I never paid them much mind as they were relatively mild and I was otherwise fairly healthy. 

Around 2007 I had suffered a moderate head trauma at work, with the blow coming from a large metal object falling from above. I was treated, x-rayed and given the all clear in the A&E (ER) at the time, but apparently the effects of head / spinal injury can take years to develop: a gradual positional shifting of millimetres eroding the integrity of the posture. 

Coupled with already lax ligaments supporting my spinal joints and some full spectrum antibiotics I was prescribed for my mysterious biliary pains in 2018 which had listed tendon-damaging properties, these could have been a damaging confluence of factors. 

I'd been aware my neck had been gradually changing shape over the intervening years since the accident: losing its natural curve and allowing my head to sink forward until it was hanging at an odd angle – skewed slightly to the left and cocked – giving me the aspect of a friendly dog. 

I had been informed by my doctors that this was "normal for a person my age", but it seemed really odd. I had lost more than an inch and a half (3.8 cm) in height since 2015. 

At this point, a lightbulb went on. 

The specialist neurosurgeon I approached agreed that my symptoms matched those around which he has based his professional career: those of brainstem compression. He requested I undergo a special series of upright MRI scans, designed to view the place where the skull meets the upper spine, at various extreme head positions. 

The only place in the UK to get such scans was one of two private centres in London or Manchester, so my partner used a third of her life savings to come up with the £3,000 we needed, and – heavily drugged, bolstered with a neck brace, earplugs, sunglasses and walking stick – my Da and I set off for Manchester in the car. 

Three weeks later, I received my first diagnosis: 

1- Craniocervical Instability (CCI) - My skull is loose on my neck, head movements causing the compression of my brainstem by my upper spine 

2- Likely Atlantoaxial Instability (AAI) - Instead of pivoting normally in a fixed place as it moves, my head may be sliding across the bones of the top of my spine, which can cause stress and damage to spinal cord and vertebral arteries 

3- Loss of Cervical Lordosis - 

This means the natural curve in my neck has straightened, as my head hangs forward under its own weight 

4- Bulging & Protruding Spinal Discs in my Cervical Spine (neck) - A result of where this misalignment has caused structural stress on my upper spine over time 

5- Disc Degeneration in the Lumbar / Sacral (lower) Spine - This may have been causing chronic pain and could have implications for further spinal instability.

The scans were a vital diagnostic tool, but also an ordeal for my already weakened body. When I returned home, I began having first nightly, then daily seizures. These intensified over the course of two weeks, until one night as I was falling asleep, I began struggling to breathe. 

The craniocervical junction – the place where skull meets spine – is packed with nerves and blood vessels leading to all the systems of the body. Millimetres of misalignment in this area can cause a compression which has the potential to cause malfunction in any and every system of the body. 

My breath would slow; becoming shallower and shallower until my chest stilled. Attempts to kickstart the mechanism moving again were like lifting weights: my stomach roiled with nausea and adrenaline, my head sank into blackness. 

Then suddenly, my chest would heave, I would gasp for a few breaths, hyperventilate noisily, and return to the world for a few moments. Following those precious seconds of relief, my breath would once again become progressively shallower; descending towards stillness again. 

That was three days ago. 

This abnormal breathing cycle has continued on and off during my nights and days. If I attempt to sit up, the cycle shortens and intensifies. So for now I am laying still, wearing an inflatable neck collar which provides the tiniest bit of traction to lift my skull away from the brainstem it is crushing, allowing me to breathe in a laboured but more regular way. 

Moving my head a few millimetres, or the occurrence of a sudden sound, thought, emotion, activates my neurons and I begin to hyperventilate – my limbs going numb, my consciousness fading. 

I am in a constant seizure state. I don't know how long the collar will continue to be effective as my ligaments weaken rapidly, day by day. 

It's fairly terrifying, as an experience, and at present feels like a sort of purgatory, in that help is hundreds of miles and thousands of pounds away. 

I recognise what I have done my best to avoid accepting this past year, until it became a critical matter: 

I urgently need surgery to insert a metal structure to stabilise my skull and upper spine, lifting my head into its proper neutral position and fixing it there permanently. 

There are only three neurosurgeons in the western world who can do this with any safety and accuracy, only one of whom in Europe: I must get to Teknon Medical Centre in Barcelona as soon as possible. 

If I get stuck on a ventilator, I will no longer be able to advocate for myself. Time is of the essence. 

Each day that passes, breathing becomes harder. I have been advised through multiple sources, that no hospital or neurosurgeon in the UK can help me, and that a trip to the A&E (ER) could kill me. 

I have collapsed twice on my way to the toilet over the last twenty four hours. Defying the instinct to call 999 (UK emergency services) takes courage, but I recognise that anybody messing with the delicate structures in my neck such as for intubation could be fatal: even trained hospital staff are not aware of the delicacy of this condition. 

I am terrified I will die in the night, or as my parents look on, helpless. It's been a tough Christmas for everyone and I can't stand to put my family through this. 

My partner is ready to drive in a van and take me to Barcelona laying flat on a mattress, as, as of the last forty eight hours, sitting up is no longer an option. I don't know what kind of state I might be in by the time I've enough money to begin the surgical booking process, but I have no other course but to try. 

The state of the world is that such a surgery costs as much as a mortgage on a medium sized house, which I think would be a pretty daunting expenditure for anyone I know. 

I haven't had any income since before my illness: aside from that one ENT surgeon, I have never been able to convince a doctor that there is anything wrong with me until a specialist neurosurgeon working outside the NHS recognised what was happening, and so even state disability benefits remain beyond my grasp. 

There are two of us chronically ill and long term disabled in my immediate family and we rely on income and care from a single family member to support everyone and work on the mortgage. 

My parents have been wonderful in welcoming me back home, caring for me and paying for all my food and medication over the last few years, but we just don't have more than a couple of grand to spare, even in a life or death situation. Putting that together with mine and my girlfriend's remaining life savings, which we had wanted to put toward a flat of our own one day, we have raised £7,000. 

The only way forward is to ask for your help. 

The surgery itself will cost in the region of €70-90,000 (c£60-77,000), depending on how extensive it needs to be – something which will be determined on further testing once I'm admitted (I will update the precise total here as soon as I have it). 

The rest covers: 

• Preoperative testing 

• Inpatient stay and care during the month or so I will be in the ICU and general ward at Teknon Medical Centre

• Transport and rented disability supported accommodation in Barcelona which I will need while recovering as an outpatient, until I'm cleared to fly back home

• Surgical insurance - in the event of post-surgical infection or hardware failure I will need follow up surgery, which can be insured for 

• Outpatient prescriptions, pain management and wound care kit

• Rehabilitative physiotherapy - I will need to learn to walk and use my body again due to the deconditioning which follows five years in bed. Also, with my new cyborg neck, my centre of gravity will have changed entirely and I will lose the ability to turn my head. I'll need to learn how to use my body differently so as not do any harm. I understand that this rehabilitative work will count towards at least 50% of my post-surgical outcome, so it's important to include it here. 

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Dear friends, most of you I've neither seen nor spoken to in several years, due to illness. Perhaps some of you have wondered why I dropped from view – I'm sorry it's not better news. 

I'm very much hoping that something positive can be achieved here. My only crowdfunding experience so far was group-buying a Christmas present for my girlfriend: this is obviously operating on a very different level, but the only route I can see open is a collective one.

Thank you for reading this; please share it as widely as you wish. Forgive me for not writing to each one of you individually – screen time brings seizures for me. I will post updates here to the best of my ability, as a way of keeping in touch.

It's important to me that you know that I have thought of you each in turn over the last few months: memories of past adventures and friendships sustain me. It's among my greatest hopes that I might get to see some of you again.

Let's see what we can do.

Hopefully, and With Love,

MK☆

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More info on my condition:

• Jeffrey Wood 

The first patient with the same case history as me to receive this surgery, two years ago. It's thanks to Jeff that patients are aware of the connection between these symptoms and issues with the craniocervical junction. Link is to his story: 

www.mechanicalbasis.org

• Jennifer Brea 

The second surgical patient to follow on from Jeff's lead; a documentary filmmaker and advocate for better medical research in this area. Her surgery was earlier this year and she writes compellingly about the process on Medium:

www.medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf