Tuesday, January 18, 2011

Mylee's Story - A little red dog and Chiari Malformation

Mylee means the world to me. She has taught me so much and is my constant companion and shadow. She is extremely loving to those she knows and is completely devoted to me.

What is most obvious about Mylee when you meet her is that she does not have the typical outgoing, friendly to all Cavalier personality. In fact she can be incredibly reserved to those she doesn't know. She often shies away from a strangers touch, giving the impression she is not friendly or that she is apprehensive. To strangers who know Cavaliers this always comes across as very strange. Is her temperament off? Was she not properly socialized? Why doesn't she want to say hi to me? Cavaliers should love everyone!

The truth is; Mylee is afraid that a strangers touch will hurt. She is afraid that you will touch her in the wrong spots. She doesn't trust that you know how to scratch her on her chest and back and leave her head and ears alone. She is afraid that you will hurt her.

Mylee suffers from Chiari Malformation. Yes Chiari Malformation without Syringomyelia present. She has been MRI'd twice a year a part from each other with no changes on her MRI. In fact it was the opposite. Her second MRI was slightly BETTER than the first. She has no hydrocephalus and no central canal dilatation. As an update Mylee had her third and final MRI at almost 5 years old, it was also clear of SM.

Mylee having a very symnptomatic episode. Warning: Do not watch with sound or at all if you are incredibly sensitive. It is hard to watch.


Prior to arriving at CM as her only cause of discomfort, my partner and I spent a ton of money in diagnostics starting with my own personal vet and moving on through different specialists. Allergies, yeast, eyes, teeth, mites, fleas etc were all ruled out long before her referral to Neurology.

Both of her MRI's were full diagnostic scans, not limited studies. Dr. Rusbridge was consulted with  and was a wonderful resource, taking time to look at her CD and her video of symptoms. Ultimately everyone ended up at the same spot. CM has to be her only source of discomfort and pain because *everything* else was ruled out.

She is now three years old and is only kept comfortable through the use of pregabalin and prednisone. Her symptoms started at 6 months of age with occasional crying out of pain. She quickly progressed to screaming severe pain episodes by a year of age and had her first MRI at one year old.

Her second was performed at just over two years of age. Before I go on in her story, the use of these two drugs does keep her very comfortable and happy the majority of the time. As much as I hate to use prednisone, it is working for us when nothing else has.

The amount of pain and discomfort my girl suffers from her Chiari Malformation is incredibly heartbreaking. She scratches bilaterally on her neck, ears, head, and face. She is a constant head rubber and will throw herself down on the carpet and roll all over. She vocalizes in pain through very high pitched screaming fits. She often retreats away from touch and is very withdrawn when she is not having a good day. 

One of the first things I notice is that on days that will be potentially "bad" her head, neck, and ears will radiate with heat. If there is snow outside she wastes no time throwing herself in it and rolling all over. 

The actual shape of her CM is not different from any other Cavalier. She is not herniated , nor does the flow of CSF seem to be extremely obstructed.  In comparison to other MRI scans I've viewed, I'd put her about middle of the road.  Not the best but certainly not the worst. 

I used to think that my dog was an anomaly. The normal 'just my luck' type of deal. How disturbingly funny was it that my girl with the beautiful clear scan was extremely symptomatic and my other girl who was and remains very non symptomatic was MRI'd as having SM. How does that happen?  Was I the only one in the entire world to have my clear scan girl be symptomatic and my "SM" dog not showing any sign of it whatsoever?

As time goes on and more people share their stories,  I now know that is no longer the case. My dog is not some random once in a lifetime occurrence. There are several of them who have clear scans but are very symptomatic with more and more popping up on public forums each day.

The first responses to our dogs diagnosis is always,  "we're SO sorry but how WONDERFUL it is that your dog doesn't have SM." Well no, its not wonderful.  So much focus has been put on Cavaliers who are symptomatic with syringomyelia, the fact that they can be symptomatic from chiari malformation alone is not anywhere on the radar.  It doesn't change the fact though that they are just as symptomatic and just as hard to mange.

The best you can say is that you are sorry. Most will automatically ask questions regarding diagnostics and care, assuming that there has to be an error and some obscure condition is lurking that has not been diagnosed properly.   I spent many months doing the same and finally came to terms with the fact that a label does not matter.  It doesn't change our day to day life and whatever will be will be.  Comfort plus quality of life IS and always will be the focus for my girl.  I don't care what her "diagnosis" is. 

SM is a very debilitating a serious condition, however for me physical presentation of symptoms and overall soundness will forever be of utmost importance. I'm one of the biggest advocates for scanning breeding dogs, yet it will forever be hard for me to put full trust in a piece of paper saying a dog is clear of SM.  They may be clear, but they may not be fully sound.

Given the choice,  I would pick having all my dogs be MRI'd with SM and live their lives pain free and not symptomatic like our Zoey, instead of having "clear of SM" MRI scans yet be in so much pain and discomfort.

What do I hope to accomplish by sharing our story? Awareness more than anything.

Maybe some thought that non symptomatic "D" dogs who remain that way for years deserve some thought and credit, and that "A" to "A" breeding's may not hold all the answers. 

After all isn't it the same goal we aim for in regards to MVD? Late onset or extremely slow progression? Clear and symptom free is what we are to aim for, however people need to be more understanding that an A grade on a breeding certificate, does not mean that a dog is symptom free.

In the future I hope to breed healthy and sound Cavaliers under the Canadian Kennel Club registered affix "Embee". Although Mylee has passed all required health clearances and was to be my foundation breeding girl, she will never be bred. When people are looking for "A" grade Cavaliers, somehow I do not think that this is what they are looking for.

Do your research before purchasing a Cavalier puppy. There are many great responsible breeders out there, doing everything they can to breed healthy and sound dogs. Seek them out and support them by buying a puppy from them. It does not guarantee that something will not go wrong with your puppy, but it does ensure the best chance of having a healthy companion.

Make sure you trust them and that you can go to them for advice and expertise. Spend some time with their dogs at their home. It certainly wouldn't take anyone visiting my home long to figure out that I have one symptomatic Cavalier and two who aren't.

Then, when you do end up taking that beautiful healthy puppy home and they grow into a beautiful sound, and healthy Cavalier, keep your breeder up to date. That is information that they want to have for making future breeding decisions.  We are all the keepers of this wonderful breed and owe it to them to do the best we can for the future of the Cavalier.

Make sure you are doing your part.

7 comments:

  1. Thanks so much for getting Mylee story out there.

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  2. Thanks u for this blog and your story.

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  3. very interesting. I have an ill dog of a different breed (rat terrier) but displays some of this behavior

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  4. It is very possible that your little rat terrier has CM/SM if he is displaying some of the same behaviour. Chiari malformation and syringomyelia are the most common in Cavalier King Charles Spaniels but both are being increasingly found in other breeds. http://www.friends-of-lola.com/8.html

    Unfortunately the only sure way to make a diagnosis is with MRI although you can try drugs such as gabapentin and pregabalin to see if they help with some of his symptoms.

    I hope that your little rat terrier is feeling better soon.

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  5. Thank you for your story. We just lost our beloved Daisy to CM - she was one day shy of 11 weeks old. She had a weird episode at 9 weeks when she lost the use of her back legs for around 12 hours - they thought it was a tick but it wasn't. She was 100% recovered the next day with no tick serum or intervention except an expensive day of observation at the vet. From then on she returned to perfect health until last week when I woke to find her paralysed and she couldn't lift her head (she had vomited spit down her chest. Again after a full day seeing 4 vets - including a neurologist, she was diagnosed with CM - she died of her own accord at 9.30pm. She was clearly a severe case - her heart and breathing were going all day until the end but her brain seemed to be cut off from her body - she lost her eye reflex and gag reflex. After researching it on the net post diagnosis we were amazed at the number of symptoms she had in her short life - ear scratching, squealing at odd times; would simply not allow us to put a collar on her and would freak out if we tried to use a lead to walk her; squealed if we checked her neck for ticks - especially if we lifted her chin; wouldn't drink out of one particular water bowl because it was too high; fussy eater - taking breaks between mouthfuls; ate with one back leg in the air to adjust her spine; had some very quiet days and looked really sad sometimes; was exceptionally small (runt of the litter) and weighed less than 2 kgs and we tried really hard to make her eat and put on weight; had days of amazing manic energy with no symptoms; insomnia; slightly eratic breathing at night; would always rest her head on something when she lay down - can't believe the number of photos we have of her like this. We are so sad because she was simply the prettiest puppy you could imagine - everyone was in awe of how beautiful and symmetrical her markings were (tri-colour but nearly all black on top and white underneath with perfect facial markings of all three colours). It cost us $2700 in vet bills and we did everything to save her. We feel truly guilty that we had no idea and for all the times we tried to insist she wear a collar and thought she was being a wimp. She just wasn't meant to live - at least she only really suffered two main episodes. In the time she was here she was so loved - I spent so much time with her - hated leaving her. The breeder has put aside another puppy for us - we are so afraid! Wendy

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  6. What an extremely heartbreaking story. I'm so very sorry for the loss of your puppy. She was very lucky to have the care and compassion you gave her.

    Your girl is definitely the most severe case I have ever heard of. I'd even wonder if something else was going along with her CM. Maybe severe hydrocephalus along with chiari? Either way its completely devastating and I can't imagine going through that with such a young puppy. :(

    Mylee is definitely a more rare case and we have thankfully come a lonnng way from where we started. Aside from having meds in the morning and being a bit head shy when people she doesn't know very well try to touch her, she leads a completely normal life. From just looking at her in day to day life you would never know that she has a problem she is on meds for. I'm very thankful that she responded so well to medications. She owes her life to them.

    I'm also very glad to hear that you have a breeder willing to work with you for a new puppy.

    This breed is *so* worth it and is the entire reason why I will never give up on owning cavaliers, creating education initiatives, and breeding responsibility.

    Please let me know how you make out and if you need support in anyway don't hesitate to email or give me a phone call.

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  7. Hi I feel for you and Mylee. I have a toy poodle that has suffered for 4 years seeing 7 different vets and specialists. His MRI came back normal but after being reviewed by a new team a chiari malformation was reported. His symptoms are a once daily episode of scratching his jaw and head for about 30 sec while screaming. He also shuts from being touched on the head or ears. His neurologist says she suspects a syring too but I don't know what makes her think that. Piper sounds just like your dog. His fits usually come after he goes nuts because I have returned home. It's so heartbreaking. He is on furosimide and gabapentin. It's so hard to get any help here in Canada as its so rare here. Any advice would be greatly appreciated.

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