Spinal fusion surgery
Donation protected
Hello
Many thanks for making your way to my site.
Emily's walking challenge is a virtual walk (with real foot power) from John O'Groats to Lands End.
Emily is starting the New Year with a walking challenge, miles will be added up so that she completes a virtual walk (with real foot power) from John O'Groats to Lands End. I will post her miles mid month and the end of the month. She starts on the first of January. Donations will go to this campaign, so I can get the fusion operation I really need. HUGE Thanks to Emily for her kind offer, plus also a great way to get fit. If anyone else would like to join her and do their own UK walk/cycle etc, let me know.
Massive thanks
Katie & Emily
To read my story please visit the Oxford Mail link below. If you would like to make a larger donation and would like to chat with me over Skype, I would love to talk. If you would like to make a smaller donation, I am very grateful, all amounts very gratefully received. Thank you.
Dr Gilete, Craniospinal Surgeon Specialist at the Hospital Teknon in Barcelona (there is no UK option at present), who will carry out the operation says; ‘symptoms only worsen if left untreated. Surgery is currently the only proven treatment for advanced cases of instability.’
After 16 years of poor health and especially a difficulty with swallowing, I have been diagnosed with Craniocervical Instability (CCI), a hypermobile neck, Atlantoaxial Subluxation and Chiari Malformations. This is a diagnosis for which I am incredibly grateful for as my ability to swallow has been slipping away for 16 years accelerating especially over the last year. This is very scary and very painful. My ability to swallow is now down to about 5 to 10 percent of functionality, and decreasing. It is very difficult to eat, I live on Pulsin bars (high in dates) and bits of pecans, as it is the only food I can swallow. So, now I need to find the money for spinal fusion surgery, before my swallowing ability decreases entirely.
As CCI, in combination with ME (Myalgic Encephalomyelitis) is only very recently understood in the world of medicine, it will take decades to filter down to the NHS. At present, it is not possible to have this surgery in the UK, so I need to travel to Barcelona to have this spinal fusion surgery. I will be under the care of Dr Gilete at the Teknon Hospital for Chiari, EDS & Hypermobility. He is one of only a few surgeons that are experienced with this type of surgery.
Craniocervical Instability is when the neck is not properly supporting the skull, and so the skull is crushing the brain stem. Spinal fusion surgery will put a stent (by fusion) on the back of my head, to lift and support my skull, allowing me to properly swallow, as well as, stop my skull from crushing my brain stem, which is very painful. I also have Chiari malformations, droopy cerebellum tonsils. These block the flow of cerebrospinal fluid and create intracranial pressure. So, during the surgery, these droopy tonsils will be shrunk. There is a need for urgency because as my skull rubs away, and sinks lower, more complications (as well as, a further reduction in my ability to swallow) arise. Others in my situation have lost the ability to breath, stand and/or have done irreversible damage to their spines. When Jen Brea finally got to surgery, autonomic dysfunction and a life threatening inability to control her breathing, due to brain stem compression, meant serious complications could have happened.
CCI also causes many other symptoms and these are some of the symptoms that also affect me. The brain stem has many functions and these are disrupted. The result is fatigue, pain, mood disturbances, immune problems, temperature control problems, nausea, limited exercise endurance, sound sensitivity, feeling faint, thirsty, digestive problems, cognitive difficulties, autonomic dysfunction etc. There are many more negative symptoms that affect people with CCI. Because there are so many negative symptoms, many people with CCI, before being diagnosed, are accused of having psychiatric problems.
During my journey I would like to raise awareness for others in my situation. I am going to approach the Oxford Mail with my and others' stories as well as try other avenues, health permitting. If you have contacts and ideas, options I can fulfill from my bed, I would be most grateful. If we can raise awareness with the government and the medical world, then hopefully we can reduce the suffering of others, and prevent them from losing a large chunk of their life to being bedridden. We can help those that are not yet diagnosed and too ill to have hope and help those with a diagnosis to get the medical attention they badly need.
When I sent the story of the guy with the very wobbly head to my doctor, he said 'yes you are right, that it is hard to believe that anyone can get to this stage in life with an unstable neck'. It is the story of one guy's incredible journey of suffering to reach the point of being diagnosed. Jeff had been through hell (story link at end) and ended up in hospital, in the US, at a prestigious hospital, he was so sick he was unable to walk. Being very clever, while previously being in bed, he had thoroughly researched his health and diagnosed himself with craniocervical instability (CCI).
On being admitted to hospital, he asked to be tested for CCI. He was wearing a neck brace but his condition was so severe he needed a halo brace. They refused and tried to get him to leave but he was unable to walk. For 4 months he stayed in the hospital and each day they tried to evacuate him from his bed, and telling him there was nothing wrong with him. He was not functional enough to be able to walk, even though he tried, so he stayed. Finally after 4 months the head surgeon tested him for CCI and he was positive. He got his halo brace and was able to leave the hospital. It shows how hard it is to get a diagnosis for this illness, even when your condition is very severe. Thankfully Jeff went on to have fusion surgery and is doing really well.
There is incredibly sad story of Nina in the UK, who, with difficulty, got a diagnosis of CCI. Nina also had EDS (Ehlers Danlos), a higher ratio of EDS sufferers have CCI. In a record 3 months, she was able to fund raise the money for fusion surgery, even getting on the television, asking the government to acknowledge the plight of those with undiagnosed and diagnosed CCI. The undiagnosed suffer greatly without knowing why. The diagnosed struggle because treatment is very expensive. Nina went to a surgeon in the US but not one of the now recognised surgeons supported by the ME (Myalgic Encephalomyelitis) and EDS community. Lack of expertise on behalf of the surgeon resulted in a poor outcome. She later discovered the excellent surgeon, Dr Gilete, in Barcelona. He tried to rectify issues but the damage was too severe, and she died. A heart wrenching story of a trailblazer with so much courage and determination. She left with us with a generous legacy, a much revered surgeon: Dr Gilete. Her story demonstrates how unbelievably hard it is to get diagnosed and to get treatment. And why this illness needs to be better understood by the medical profession and the government.
Me-pedia explains the medical history on the understanding of CCI; 'it usually develops as a result of physical trauma such as a car accident, an inflammatory disease such as rheumatoid arthritis or a congenital disorder such as Down's syndrome. More recently, physicians have reported an increased prevalence of CCI in patients with hereditary disorders of connective tissue such as Ehlers Danlos Syndromes (EDS)'. Now specialised surgeons are diagnosing and treating a subset of people with ME and CCI, such as Jeff, with very positive outcomes.
Jen Brea (story link at end of page), who made the film Unrest, and is well respected in the ME community, spent 8 years mainly bed ridden and with huge suffering. She finally got a diagnosis of CCI and tethered cord syndrome, had the surgery and is now doing really well. So, it seems, worldwide a subset of people are emerging with a diagnosis of ME/CFS and CCI. More, and more people with ME are being diagnosed with CCI. We have the strength and courage of Jeff, Nina and Jen, as well as others, to thank for leading the way to a new understanding, and we are privileged to be able to follow in their footsteps. Their insight has forged the way for others.
Some people with ME/CFS have already been diagnosed with CCI and had surgery with great results. Some, like me, are attempting to fund raise. It is a brutal illness, it would be good to raise awareness of what I and this subset of people are enduring. The more awareness that is brought to this issue, the quicker it is likely to be understood by mainstream medicine, and the less people will have to suffer.
Because getting a diagnosis is extremely hard, many years are spent with severe symptoms, in a state of confusion as to what is wrong. I am sure this is true of many other illnesses. So staying strong through that confusion and suffering, and fighting to find a solution is an uphill battle. I am sure many can relate to this situation. But some people with CCI don't make it. Suicide is an option. And maybe, if they had received a diagnosis and seen a way out, they would still be alive.
More info on CCI
https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71
If you would like to donate towards my fusion surgery, then I would be extremely grateful. Thank you, Katie Miller
Organizer
Katie Miller
Organizer
