Neuro cranial vertebral syndrome and filum disease
Donation protected
So here i am, living out my worst nightmare, one day waking in what I can only describe as a 90 year olds body.
I’m so embarrassed to have to post this but the nhs and Uk health system has failed me and many others essentially the bottom of my spinal cord is tethered and pulling on my cerebellum in my brain causing it to herniate onto the top of my spinal cord. This is a horrendously debilitating disease that is not recognised by Uk healthcare children, elderly and mentally challenged are facing this horrendous neurodegenerative disease. The medical “professionals” even had my own family and friends think I was exaggerating and that hurt me mentally bad! Some people will even die without ever finding out what is wrong with them!
I started showing symptoms in late July, early August; these are as follows: weakness and dyspnea, i instantly lost lung function. Down to 70 percent. Insomnia, nausea, scoliosis, my right shoulders dropped by 2 inches, wide spread fasciulations (muscle twitches like bugs under my skin), ataxia, chronic severe back pain- lower and upper, muscle atrophy from head to toe, words being slurred, brain fog, enormous base of skull headaches, all my joints crack upon movement, i can’t walk properly and get shooting pains in my lower extremities, abdominal pain, digestion problems, weak bladder, weak bowel, leg & hand tremors, two small lesions on my brain, fillum disease and neuro cranial vertabral syndrome, I feel like a witch doctor has a voo doo doll of my body, it’s progressing so fast! I’ve been chasing my tail round for 6 months only to come into contact with walls and dismissive medical “experts”.
I’ve been discharged by the gastro team, rheumatology, physicians and respiratory team. After frequent ambulance calls and at least 30 gp visits, I was told it was asthma and anxiety. I was given asthma pumps, antibiotics, steroids and even anti depressants. I took their medication even though I knew it wasn’t asthma related and I was still progressing and deteriorating at a ridiculously fast rate.
I have been through a roller coaster of emotions since this all began although I have got to endure spinal surgery, I now have a little light at the end of the tunnel. All thanks to a great lady that was there to help with no other gain than selflessness; her name is Michelle Boyd and her poor daughter had to endure the same frustrations I’ve had to!
I have set up a go fund me page to help raise money towards my treatment. A vital operation that's going to cost around £20,000 not to mention travel expenses, and accommodation. This surgery is to stop the progression of my new diagnosis and hopefully relieve some of my symptoms. I’m heading to Barcelona to see if I’m a candidate for surgery as the neurologists in the UK, private and NHS, are clueless when it comes to neurological conditions. The Uk offer no treatment or surgery where as the experts in Barcelona believe they know the root cause of my symptoms and disease!
The chiari institute in Barcelona believes that fillum disease is the root cause to many conditions such as the scoliosis, a Chiari Malformation type 1 where your spinal cord is pulling on your cerrabelum causing it to herniate and put pressure on your spinal cord causing a plethora of horrible symptoms. Also neural cranial vertebral syndrome and a syringomyelia which is basically a big fluid build up that forms into a cyst damaging the inside of your spinal cord and potentially permanent damage.
I'm at my lowest point, I've even thought of taking my own my life, because living with this pain, day in day out, I'm not sure what would be better. Nobody believing me and not being able to move or live even a half normal existence, I really need help. And seeing that there is a light at the end of the tunnel, and a way of improving my life is what's keeping me going. So I'm asking all of you to dig deep, and please give what you can to help give me some quality of life.
I’m not expecting the full amount but if it happens to go over the amount needed money will go towards the chiari charity or will be used to present a case towards the NHS and uk neurologists! Which ever you guys prefer would be done!
UPDATE:
Hi guys latest update, likes, shares and donations are much appreciated the Uk health system failed me. I’ve had to come to Barcelona for a true diagnosis. Good news is I am a candidate for surgery. Bad news is I have way more wrong with me than I first thought. I will post the official report when I get it but I have multiple lesions on my brain and spine. My right cerrabellum tonsil is applying pressure to my spinal cord. I have a low lying conus. And an enlarged blood vessel that is pushing on the part of my brain that controls motor movements ie, legs and arm movements. Fillum disease, neuro cranial veterbral syndrome, possible multiple sclerosis, possible Ehlers Danlos syndrome, a scoliosis, chiari type 0 and finally the a syringomylia (cyst in my spine). Please can someone tell me how the Uk health system can miss all of this!
Please like & share to raise awareness!
Thankyou all
I’m so embarrassed to have to post this but the nhs and Uk health system has failed me and many others essentially the bottom of my spinal cord is tethered and pulling on my cerebellum in my brain causing it to herniate onto the top of my spinal cord. This is a horrendously debilitating disease that is not recognised by Uk healthcare children, elderly and mentally challenged are facing this horrendous neurodegenerative disease. The medical “professionals” even had my own family and friends think I was exaggerating and that hurt me mentally bad! Some people will even die without ever finding out what is wrong with them!
I started showing symptoms in late July, early August; these are as follows: weakness and dyspnea, i instantly lost lung function. Down to 70 percent. Insomnia, nausea, scoliosis, my right shoulders dropped by 2 inches, wide spread fasciulations (muscle twitches like bugs under my skin), ataxia, chronic severe back pain- lower and upper, muscle atrophy from head to toe, words being slurred, brain fog, enormous base of skull headaches, all my joints crack upon movement, i can’t walk properly and get shooting pains in my lower extremities, abdominal pain, digestion problems, weak bladder, weak bowel, leg & hand tremors, two small lesions on my brain, fillum disease and neuro cranial vertabral syndrome, I feel like a witch doctor has a voo doo doll of my body, it’s progressing so fast! I’ve been chasing my tail round for 6 months only to come into contact with walls and dismissive medical “experts”.
I’ve been discharged by the gastro team, rheumatology, physicians and respiratory team. After frequent ambulance calls and at least 30 gp visits, I was told it was asthma and anxiety. I was given asthma pumps, antibiotics, steroids and even anti depressants. I took their medication even though I knew it wasn’t asthma related and I was still progressing and deteriorating at a ridiculously fast rate.
I have been through a roller coaster of emotions since this all began although I have got to endure spinal surgery, I now have a little light at the end of the tunnel. All thanks to a great lady that was there to help with no other gain than selflessness; her name is Michelle Boyd and her poor daughter had to endure the same frustrations I’ve had to!
I have set up a go fund me page to help raise money towards my treatment. A vital operation that's going to cost around £20,000 not to mention travel expenses, and accommodation. This surgery is to stop the progression of my new diagnosis and hopefully relieve some of my symptoms. I’m heading to Barcelona to see if I’m a candidate for surgery as the neurologists in the UK, private and NHS, are clueless when it comes to neurological conditions. The Uk offer no treatment or surgery where as the experts in Barcelona believe they know the root cause of my symptoms and disease!
The chiari institute in Barcelona believes that fillum disease is the root cause to many conditions such as the scoliosis, a Chiari Malformation type 1 where your spinal cord is pulling on your cerrabelum causing it to herniate and put pressure on your spinal cord causing a plethora of horrible symptoms. Also neural cranial vertebral syndrome and a syringomyelia which is basically a big fluid build up that forms into a cyst damaging the inside of your spinal cord and potentially permanent damage.
I'm at my lowest point, I've even thought of taking my own my life, because living with this pain, day in day out, I'm not sure what would be better. Nobody believing me and not being able to move or live even a half normal existence, I really need help. And seeing that there is a light at the end of the tunnel, and a way of improving my life is what's keeping me going. So I'm asking all of you to dig deep, and please give what you can to help give me some quality of life.
I’m not expecting the full amount but if it happens to go over the amount needed money will go towards the chiari charity or will be used to present a case towards the NHS and uk neurologists! Which ever you guys prefer would be done!
UPDATE:
Hi guys latest update, likes, shares and donations are much appreciated the Uk health system failed me. I’ve had to come to Barcelona for a true diagnosis. Good news is I am a candidate for surgery. Bad news is I have way more wrong with me than I first thought. I will post the official report when I get it but I have multiple lesions on my brain and spine. My right cerrabellum tonsil is applying pressure to my spinal cord. I have a low lying conus. And an enlarged blood vessel that is pushing on the part of my brain that controls motor movements ie, legs and arm movements. Fillum disease, neuro cranial veterbral syndrome, possible multiple sclerosis, possible Ehlers Danlos syndrome, a scoliosis, chiari type 0 and finally the a syringomylia (cyst in my spine). Please can someone tell me how the Uk health system can miss all of this!
Please like & share to raise awareness!
Thankyou all
Organizer and beneficiary
Chris Fantetti
Organizer
Heidi Piper
Beneficiary
