This is a copy of the letter that I sent to my MP Andy Burnham who just also happens to be the Health Secretary at the moment!

Please give it a try yourself, and remember to copy Andy in. The more letters he gets then the more memorable it will be and stick in his mind.

? «Andy Burnham MP»

10 Market Street
Leigh
Lancashire
WN7 1DS»

Christopher Downing
25 XXXXXXX
XXXXXXX
XXXXXXX
XXXXXXX
XXXXXXX
Phone: 07969 XXXXXXXX

Dear Mr. Burnham
I am writing to seek your support to encourage our PCT (Primary Care Trust) to do more to raise awareness of Chiari Malformation and Syringomyelia and to help improve the experiences of those diagnosed with this condition. It is my hope that this could also be eventually spread across the whole of the UK linked with GP information sheets and better education generally.
Chari Malformation type 1 is a serious neurological condition characterised by a downward displacement of the brain’s Cerebellar Tonsils into the spinal canal. This arrests the normal flow of Cerebral Spinal Fluid throughout the skull causing intense pressure around the brain and brainstem. The disturbed CSF flow and the resulting buildup of pressure can also lead to the development of Syringomyelia. A Syrinx is basically a cyst like sack of Cerebral Spinal Fluid that has been forced into the spinal canal placing intense pressure on the surrounding nerve tissues where it is located. The Syrinx vary in size and position within the spinal column.
If left untreated or indeed mis-diagnosed the general prognosis is deterioration in symptoms at various rates, and can lead to paralysis, stroke or even death in extreme circumstances.
The sooner the condition is diagnosed and treated, the better the prognosis is. Surgery is not a cure; it is however a best effort attempt to halt the progression and deterioration of the symptoms.
Chiari itself is generally regarded as a congenital condition. Syringomyelia however can become evident as a result of Chiari Malformation type 1 or can develop as a result of direct trauma. There are other types of Chiari linked with other conditions such as Hydrocephalus and Spina Bifida.
Common symptoms of Chiari Malformation type 1would include (but are definitely not limited to) intense headaches, muscle and joint pain, muscle atrophy and weakness, chronic fatigue, pins and needles and numbness throughout the body, but generally as a “cloaking effect” across the neck, back and shoulders. Manual dexterity issues with buttons or coins for instance, impairment of sensory feeling in the hands with heat or minor injuries, vertigo and balance problems, insomnia and impotency. The range of symptoms experienced by a person with this condition can vary immensely in appearance and intensity.
Unfortunately due to the wide range of symptoms caused by Chiari and generally very little or no knowledge of the condition throughout GP Practices and beyond, many sufferers do currently go for years without an accurate diagnosis. Common mis-diagnosis includes Multiple Sclerosis, M.E, Fibromyalgia, Chronic Fatigue, Depression, Stress and Migraines.

In was diagnosed in early 2009 after trying to find an answer for the symptoms that I was experiencing. I had been told that I had a pulled muscle, trapped nerves in my neck, was suffering from depression and anxiety, protruding spinal discs and even told that I was making it all up. I pressed on and fought my corner and was eventually referred for an orthopedic appointment.
Several months later following an MRI scan at Warrington Hospital, it was found that I had a brain herniation of 17mm below the Foramen Magnum (base of the skull) and a Syrinx in my spine covering vertebrae C1 to C3. I was officially diagnosed two and a half months after my MRI scan and had to wait a further two and a half months until surgery. In the mean time, my symptoms worsened greatly, meaning that my prognosis post surgery had now deteriorated.
I underwent Foramen Magnum Decompression in April 2009. This involved removing a section of the base of my skull, shaving the backs off my top 2 vertebrae and applying a “dura patch”. I am now left with a 15cm scar at the back of my head following the procedure; however it has thankfully served to arrest the progression of the conditions.
MY CSF flow has now resumed, and I have been told that my Syrinx has shrunk. I am however, left with a terrible range of symptoms including residual damage to the nerve tissue within my spine and all that this type of injury brings with it. I suffer with chronic fatigue daily, I am in continual pain, my muscles suffer from general weakness and atrophy, I find it difficult to sleep without help, concentration and memory issues exist and my coping skills and confidence levels have taken a battering. All because I was not diagnosed early enough, and could not receive the treatment quick enough to avoid the residual damage left behind.
The current level of publically available information in this country is virtually none existent. None of the GP’s in my local surgery at Braithwaite Road has the first clue about either condition. I can assure you that this is echoed throughout many GP surgeries within the UK. However the main GP, Dr Kadiyala is very supportive with regards to my residual symptoms.
The NHS choices website makes no reference at all to Syringomyelia and only makes one small reference to Chiari Type 2 in relation to Spina Bifida. As a result of this many sufferers turn to websites from the USA, where we find lots of very disturbing images, information and prognosis. There are however, lots of sites that do offer practical advice when you dig a little deeper and self educate.
It is my understanding that there is work under way to raise the profile of Chiari and Syringomyelia being undertaken by The Walton Centre for Neurosurgery, I have been informed that they are currently trying to have the conditions classified as “long term conditions” and that this will mean that there may be improved patient information pre and post surgery.
In hindsight, there is probably more information available in the USA because sufferers actually seek out and pay for Surgeons and Doctors to treat them for the conditions. Here we do have the benefit of the NHS, however how useful is it when there is not enough information out there to affect proper diagnosis and early diagnosis with a condition that relies upon speedy diagnosis and treatment? There are very few “experts” around, and many more ill-informed professionals who do not know enough to correctly diagnose and treat the conditions.
There have been studies done where it is suggested that less than 1% of the population are affected; however with more and easier access to MRI scanners, more and more people are being diagnosed. Patients can be asymptomatic for many years, or even for their whole lives, until an event when it becomes more apparent. There may be hundreds or even thousands of people out there right now being wrongly diagnosed or wrongly treated who will find treatment too late down the line to allow them a positive prognosis. It has also been suggested that the condition is hereditary, although not enough evidence has yet been evaluated.
Not only does the front line NHS suffer with a lack of correct information, unfortunately the DWP also. This in itself brings with it even more pressure and a complete lack of understanding putting sufferers at a distinct disadvantage within the current system. I can put you in contact with many people who are currently being put through horrendous ordeals when dealing with ESA and IB.
This situation has inspired me to start my own campaign to raise awareness of Chiari Malformation. I am asking for your support, not only as my local MP but also as the UK’s Health Secretary to help raise awareness, carry out an investigation and support those that are willing to make a difference for a growing issue.
I do hope I can count on your support with this matter, any advice you could offer me would be greatly appreciated. I do understand that there are a great many conditions out there affecting a great amount of people, most of which have a much lower quality of life than I do. However, I am sure that this is a rapidly growing problem within the UK and that there are just not enough resources available now to treat the current level appropriately and fairly.
I can offer many links to the best websites in the world, and put you in contact with experts from The Walton Centre of Neurosurgery who have recently given me a lot of motivation and who have promised lots of support.
Thank you for taking the time to read through my ramblings. As you can see, this is something that I feel very passionate about.
I hope to hear from you soon.

Kind Regards

Chris Downing

Other links that you may find interesting:

How to contact me? Why should you join us?
Want to Help Chiari Blog?
My Pathway to Work Interview
Is Chiari Hereditory? Congenital?