That Dirty Word in the CKCS World; Chiari-like Malformation

Musing 5:
After a hectic weekend Christmas shopping, I was looking forward to sitting on my tush in my raggedy old track suit, sipping hot coffee and visiting my Internet Top 10 Haunts for news. A good chunk of that list includes seeking news on Chiari Malformations and Syringomyelia in the CKCS breed. Now, now, I hear you, don't criticize me. I know some of you follow the rule "ignorance is bliss" and if that is what works for you, seriously, I think it's great. Not so great for me though. I like control, it provides me a sort of calm.
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The SM Yahoo list was today's "ohh and ahhh" news feed. I was directed to a newletter written by Penny Knowler and Clare Rusbridge, titled "Researching Chiari-like Malformation. Story So Far.." First, I have to say, I love the title. Research today changes tomorrow - I need to remind myself of that often. This particular article tweaked my interest for a few reasons. For me it contained helpful explanations, great research news, plus some eyebrow raising stuff.

[Skip this basic primer if your up to speed on CM/SM canine disease.]

1. 93% of Cavaliers suffer from a Chiari-like Malformation (CM) "overcrowding at the back of the skull" ~ C. Rusbridge
2. CM can lead to Syringomyelia (SM), when a sryinx develops in the spinal cord.
3. Dogs with SM can be asymptomatic. Yes. You read that correctly.
4. Other SM dogs experience an increase* in pain associated with the sryinx width or location.
5. Once diagnosed many dogs are well managed on medication for either CM or/and SM pain. Sadly, some struggle to balance painful symptoms with quality of life.

Helpful Information
Read the article. It offers a great, simple, easy to understand description of CM. The article also states other breeds now being recognized as also suffering from CM and SM:
Yorkshire terrier, Pomeranian, Maltese terrier, Chihuahua, English Toy - King Charles Spaniel, Griffon Bruxellois, Affenpinscher, French Bulldog, English bulldog, Pug, Havanese, Norfolk terrier, Boston terrier, Bicon Frise, Staffordshire bull terrier and various mixed breeds.

 Great Research News

1. Griffon Bruxellois breeders and the American Kennel Club, got together and raised funds to finance studies evaluating CM using radiographs. The study revealed the possibility on how CM may develop during embryo development.
2. CKCS Foetal Tissue Project at the Royal Veterinary College has discovered that young CKCSs with early onset SM have smaller skulls.
3. Genetic Research;  of animal Chiari-like Malformation and the human condition Chiari Type 1 Malformation (CM1) is hoped to lead to better care for human and canine sufferers. At this point in the article, much of what I read went straight over my head! I am trying to understand it though. When time permits, I follow two resources on CM1 in humans to try to get a take on possibly what a dog might tell us; a young girls blog and a facebook group.
4. Worldwide DNA Database now has 235 CM affected canines, confirmed by MRI recorded.

Eyebrow Raising Stuff

A few headlines in the article caught my eye and raised a brow, ok maybe two brows. "Support is International. Working Together and Making a Difference. Fundraising is Essential for Research. YOU Can Help".

Rightfully, many people were thanked in the article for their time, financial support and expertise. I had a "duh" moment right then! We are also so lucky, that right here in Canada, we have the same type of dedicated breeders but they are CKCS breeders and health advocates. Many of these same people also helped me while I sought a diagnosis and pain management program for Kodee. Too often we forget to thank those that have helped out but I suppose better late than never would go a long way.

Moving Forward

The article makes such an important point; fundraising is imperative to continue with research. If you are a Canadian, contact your local club for more information on making donations to SM and/or the MVD fundraising programs. Two other really important research programs on CKCS is the Genome Project in Montreal and the Foetal Tissue Project. Both are fascinating programs making huge strides in CM/SM research and your donation to the International SM Fund supports research programs such as these.

Ending With a Rant

So how come THIS article provoked a "ohhh and ahhh" response when I read the title "Research into Chiari-like Malformation" and also prompted me to write such a lengthy journal entry? Kodee suffers from  Chiari-like malformation severe pain. Most CKCS owners I speak with are not aware an "A Grade" dog can acquire pain from the CM. Some go as far as to totally dimiss the possibility.  
 
Real Facts I have learned: 

1. Most people talk about SM being painful. Depending on where the sryrinx is and how wide it is, it can be extremely painful.
2. Other dogs diagnosed with CM and SM are asymptomatic (on exam no symptoms or pain). Neurologists have even noted years after a SM diagnosis, some dogs still remain asymptomatic. A wonder I know! My Neurologist is TOP! If she says it, it's so, period. It's not talked about often. It's a good thing, I think we should talk about it more.
3. Now it seems, everyone gets excited when a CKCS with CM but no SM is revealed!. This is called a "Grade A dog" chiari-like malformation but no syringomyelia. Currently, they are tooted a fantastic thing for a breeding program.
4. Now comes the *hush factor*. The one no one likes to talk about; the few Grade A dogs discovered to be suffering severe pain episodes due to CM alone. Sadly, that is Kodee.

For me, reading, writing, debating, and sometimes obsessing over CKCS health research, works to keep me sane(r). That is what journals are about - my thoughts at the moment I write them. It's possible, I may wake up tomorrow and even disagree with myself. It's been known to happen (more than I care to admit).

I am an optimist. I have to be, I just love this breed. But I am not foolish. Not when I own one dog pain managed on 100mg gabepentin, 3 times a day and currently on 2.5mg prednisone as well. No one is to blame for the past. The future is what matters. This is my "bit" contributing awareness, supporting research, and encouraging donations.

Recognizing Pain in Your Dog
Prednisone: The Good and The Bad