Tuesday, January 18, 2011

A Continuation of Mylee's Story - A struggle with Chiari Malformation

This week I was very fortunate to be approached by Norma Inglis of Craigowl Cavaliers who writes for Cavalier Chatterbox. Most people who are involved in Cavaliers have heard of Chatterbox. We all wait eagerly as each week a new "Chatterbox is open". Anyone who has read this week's Chatterbox would have seen Mylee's story posted. It was the same version I first chose to share with the SM list originally. If you haven't, go check it out. Thank you to Norma and Chatterbox for sharing Mylee's story with the Cavalier world. It is one that I hope people will revisit, and learn from.

Mylee's story will also be posted in the upcoming Chiari Malformation and Syringomyelia Awareness event that is being hosted by Two Little Cavaliers. I look forward to the awareness, and attention being brought to such important health issues. I also look forward to celebrating the accomplishments made so far, a re-commitment to research initiatives, and recognizing those wonderful breeders out there who are working to breed healthy cavaliers.

I used to be very apprehensive about sharing Mylee's story. Whenever I tried to with Cavalier friends, it was incredibly hard. Her story always resulted in questions and criticisms that caught me off guard. They often put me on the defensive, and upset me. Comments and criticisms from people who weren't trying to be mean, they just plain didn't understand how a dog could be clear of syringomyelia yet be so symptomatic and in pain. Almost all awareness and research was dedicated to SM. My little red monster did not fit with any of it.

"Are you sure you haven't missed something?"

Yes I'm sure, everything has been ruled out. She is a healthy little dog aside from her CM.

"What about her teeth? Her ears? Allergies? Autoimmune? She did have a mild amount of PSOM in one ear."

All have been ruled out. Mylee has beautiful little white teeth. 100% better than her sister who lives here and receives the same dental care. She did have a yeast issue in her ears that cleared up easily with a diet change and treatment. From her elimination diets it was easily determined that she has sensitivities to chicken, corn, wheat, and soy. Her coat, skin, and ears look incredible after making changes to her diet and moving to primarily a home cooked holistic approach. Although she was looking better after the changes she was still vocalizing and scratching in pain. Her ears and head still felt like they were on fire with the amount of heat coming through them.

PSOM was also addressed and ruled out. Her Neurologist said several times when I inquired that she sees several cavaliers and other breeds with large amounts of PSOM in *both* ears and that they were definitely not screaming out and vocalize in pain like Mylee does. In her experience they often have no symptoms at all from their PSOM.

"Do you know what the long term effects are of prednisone?!"

Yes. I am well aware of the long term effects of prednisone. I make the choice for her quality of life now versus possible *long term* (several years down the road) side effects. If the use of prednisone allows Mylee to be comfortable and happy 95% of the time for 9 years, instead of her suffering in severe amounts of pain her every waking moment, but her living to be 12 years old; my choice would be the same every time. I will take however long I can have with my girl, and not take a single day for granted. I do that regardless with my dogs as you never know what tomorrow will bring.. healthy dog or not.


"I would never have my dog on prednisone for that long!"

Never say never until you have a dog like Mylee. You have never lived with a dog in severe amounts of pain.

A video of Mylee's symptoms
. It does have sound but if you are sensitive I wouldn't watch it or I would turn your sound off. After watching it. Imagine experiencing that level of pain 10-15x a day. Imagine for the rest of the day your dog laying flat out on the floor with her paws under her and her chin flat against the floor and her head and ears radiating with heat. That is what Mylee goes through without being on prednisone.

The combination (yes they have to be in combination) of Lyrica (pregabalin) and prednisone have been wonder drugs for Mylee. They allow her to experience everyday like a dog should. She runs, she plays, and is completely devoted to me.

I DO NOT blame her breeder in the slightest for what has happened to Mylee. I hold the utmost of respect for her and what she has accomplished in the breed. She is an incredible, and highly respected woman in Cavaliers. It was NOT her fault that Mylee turned out this way.

I THANK HER for entrusting Mylee to me and for producing her. She has made made my life incredibly special in ways that I have trouble putting into words. She is a very special "little red dog" to me and I am thankful for everyday I spend with her.

She was so little when I brought her home
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First Bath
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My Mom's Favourite Picture. She loves to steal Zoey's balls. Zo LOVES her balls but will not take them from Mylee, so Mylee hoards them.
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Assisting Dr. Druor with an echocardiogram
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The princess in her spot - On the back of the couch. Anyone who has visited here has seen her jump up there to survey her world.
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If you must
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With her girl - me
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6 comments:

  1. Great post as always. Prednisone and lyrica are wonderful. Such a difference both made some. Thanks for sharing this story

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  2. Thanks for posting Mylee's story MB. I've looked forward to reading it for a while. I've never seen her video before now - I am so glad the pred/lyrica are working for her! That's awesome!! Thanks for being such a good breed representative.

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  3. You are to be thanked for sharing publically your experiences with an undiagnosed CM pained dog. Your expereinces help other recognize the pain their dogs might be suffering. Like you helped me with Kodee.

    Once I got to a Neurologist that was VERY familar to treating pain in CM only dogs, Kodee's quality of life is perfect!

    As is Mylee's now. That video was shot a long time ago, its not the same dog I see running wiht mine now, hiking or chasing unsuspecting rabbits. My only wish now, is she'd stop CATCHING the baby rabbits!

    Let's not forget the important thing here. To spread awareness CM pain exists so owners can seek out knowledgeable Neurologists who have been treating it accordingly. :)

    The new Mylee smiles all day, plays with my dogs and well, catches poor bunnies and make quick work out of them.

    Lets not forget the important thing here. Diagnosing dogs with CM pain and getting them to Neurologists that recognize this as ours did and successfully manages their pain so they once again are happy dogs with quality lives.

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  4. Such a story! But such beautiful ones!!!

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  5. Thanks so much for visiting my blog and leaving such a kind message. I look forward to reading yours too and being friends. I read with interest the CM pain and the predisone use. I'm not familiar with CM pain but well aware of predisone. For myself and my dogs in the past and now Holly. For myself, years ago, I told my doctor that I would rather have quanity rather than quality when it comes to years of life and Predisone is the drug that did it for me. Other doctors want me off of it and I just shake my head no...as long as my primary doctor wants to keep me on a low dosage that helps, I'm all for it. Holly has been on predisone a couple of times in her four years and my last dog, Alex lived on it his last 4 or 5 years of his 13 year life. Your blog is very interesting reading...thanks! Lots of love, Debbie and Holly

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  6. Thanks so much for sharing Mylee's story, she is such a pretty little thing and so glad she has some quality of life now. I too have a cavalier with painful CM (no SM)so I understand well the need to educate others that this condition with pain exists. Kookie will be 1 year old next week, I first noticed his symptoms when he was just 4 months old. It was a struggle to get the pain/scratching symptoms recognised as his scan at 8 months showed moderate CM. Why do some people think this is a good result I asked myself when his suffering was so blatantly obvious. I bless every day now for Gabapentin, tramadol and cimetidine as the meds are helping so much. Love from Catherine & Kookie

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