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Lynn Burton – talking about her daily life experiences of living with Chiari-Malformation.

Chiari is a rare and complicated condition of the brain and spinal cord which should be taken seriously, in dogs as well as humans. The charity of which I am a trustee, takes CM in dogs so seriously it gave Dr Clare Rusbridge a grant of £6.000 to collect and research DNA from affected dogs to try to find the gene responsible.

On Sunday, I tried to explain about 'Zero Chiari', which means although there is no herniation of the brain down into the spinal cord, there is overcrowding at the Foramen Magnum which means that there is still a blockage of Cerebral Spinal Fluid (CSF) which causes pressure at the back of the head base of the brain.

So yes dogs walk on all fours, do not have cerebellar tonsils, but this does not mean CM does not affect most definitely does. I myself have gently stroked the neck of a CM dog, this lovely dog didn't move his head, wasn't aggressive but gave a low growl to let me know he wasn't comfortable being touched. I didn't realise at first what this meant, but when my hand gently brushed his neck again the same happened. He had been running around, jumping excited to see me in his home, but then as in humans, this activity has a price.... pain. His owner settled him with pain medication and he had a good night.
As someone with Chiari I knew exactly why he growled on being touched at the back of his head where the pain was, there are many days when I feel the same way, although a growl may scare the doctors who examine me!   Dr Clare Rusbridge has shown in video films how dogs with CM are affected by pressure after defecating, running and even barking! How they need to sleep with their heads raised, as to lie flat causes pain in the head. If Chiari affected dogs differently why do dogs show the same symptoms as CM in humans? Balance problems dogs after defecating, barking.
Humans after laughing, straining, coughing, leaning forwards, these actions cause horrendous pain as straining etc causes the CSF to 'shoot' from the spinal cord through the Foramen Magnum into the brain, the CSF rushes past the CM or overcrowding but then as the CM or overcrowding is blocking the exit back to the Spinal cord this cause huge CSF pressure build up until the CSF eventually trickles back through. I compare the effects of shaking a bottle of Champagne with the cork in, if the wire has been removed the cork will explode at force from the bottle, however if the wire is left on the amount of pressure built up is there to see in the form of 'bubbles', the pressure cannot escape but eventually the bubbles subside and settle. But the pressure that made the cork explode from the bottle was still there trapped at the neck of the bottle. The pain this causes is horrendous, for seconds I cannot move, see, hear just  excruciating pain and thumping pressure in the back of the neck and head.   Weather changes also affect head pain, low pressure can cause low pressure pain and many fellow patients with Chiari have voiced how the changes in the weather can cause them to feel worse. Heat can also cause pain and, in my case, a lovely hot sunny day has me reaching for fans, cool drinks anything but overheating as this makes my head feel as though it will explode!
I am in pain every single day, blurred and double vision, tingling and numbness in my arms hands and legs. Loud ringing in my ears, loss of hearing, choking. I dread catching a cold as coughing and sneezing causes tremendous pressure pain. I can't walk far because of the pain in my spine and head. I also walk some days like a 'crab' as my balance is so affected I can't  walk straight, fatigue. The list goes on.   Even in humans some doctors do not know a lot about Chiari, every day I receive calls to the charity helpline from patients diagnosed with Chiari but told, " Chiari will just give you a bit of a headache, all your other symptoms are nothing to do with it". but once directed to a surgeon who specialises in Chiari they are often offered surgery to try to halt the progress, in some cases to avoid paralysis. As the surgery carries huge risk of paralysis, stroke, brain damage. Patients are offered the surgery  but is up to the patient whether to take such risks, most will opt for surgery of the severe pain and their quality of life is so limited because of Chiari.
  I  have morphine patches which release morphine into my blood stream 24 hours a day 7 days a week, I also have oral medication for breakthrough pain and while I accept that not all with CM will be as badly affected nearly all will experience some level of discomfort every single day.   I can understand why many of those with Cavaliers will not want to acknowledge that CM can cause such problems in dogs, if CM affects the dogs so adversely where do they go from here? But if warnings about Syringomyelia/CM had been listened to and acted upon years ago when concerns where first aired and breeding form affected dogs had been stopped maybe this beautiful breed would not be in the dangerous state it is in now. With registrations down by thousands, it will soon be impossible to insure these amazing dogs. This will put off prospective owners and if the demand for puppies goes down there is a real danger for the breeds survival.   Maybe instead of shying away from some kind of 'clear dog ' breeding programme, it should be embraced. There is no shame in admitting that 'your' breeding dogs have CM/SM, no shame at all. Shame is when a breeder carries on breeding knowing that their dogs will pass on these horrendously painful conditions.    A lady with Chiari Malformation put the following on our facebook page today in response to a post about breeding from CM/SM affected dogs, it really sums everything up:   "Your comments made me nearly cry. One of our main concerns is can we pass this horrid condition on to our children. The fear of inflicting this pain and torment plays on all our minds. To think that any one would breed an animal knowing they will possibly have Chiari is so sad. I would not wish this on my worst enemy, never mind a dog who can not express their pain. I hope your good work spreads the word, and people out there listen. Thanks for taking the time to work with the Trust, only positive steps can come out of it."   We know this pain we live with it daily, dogs can't tell you what they go through........we can.

Lynn has written this article at the request of Tania Ledger (Cavalier Matters) as a synopsis of her talk given at the Companion Cavalier Club Health Seminar on 18th November 2012