Ella was diagnosed with Syringomyelia and taught me more in her short life about how to live life to the fullest, love with all your heart, and learn from each other.

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The moment I first held Ella, my world changed. She has touched so many people giving love as a therapy dog but now it is time to give back. No matter how hard she tries to give, her eyes show sadness and pain.

Friday, December 31, 2010

Two Little Cavaliers Spreading Awareness of SM Event

When I heard that http://twolittlecavaliers.blogspot.com/2010/12/syringomyelia-awareness-event-we-need.htmlwanted to do a special week to spread awareness of Syringomyelia, I was so excited.  So I wanted to share again Ella's Story.

“Half of the Cavaliers here probably have Syringomyelia”, Ella’s neurologist said when I had him talk to a group of Cavalier owners in Charlotte. He began to show slides of what it is, SM breeding protocol, treatment, etc. which I listed some links of the information available but I am just a pet owner with a love so deep for an angel that was brought into my life 4 ½ years ago. The most important thing in my life is her and if her story and pain will help another then it gives me hope and something I can do to when I feel helpless.

Ella’s story begins with a Cavalier named Ollie. I was looking on the Internet and I saw a picture of this beautiful dog Ollie. At that moment, I wanted to learn more about him and I read about what he went through. I bought the book and cherish it everyday. I will always talk about the book For the Love of Ollie because the story gave me knowledge about this condition and helped me recognize what was going on with Ella. I will always be thankful for that. Sandy Smith did not write the book to make a profit, in fact the money goes towards SM research. This one book made a big change in my life. Ollie touched me and I reached out to Sandra when I found out about Ella and she offered her support.

It was Ollie’s story which put together pieces of a puzzle which several months later ended with results from an MRI which diagnosed her with severe CM/SM. I thought I heard him wrong. I knew the symptoms from reading “For the Love of Ollie”, that can not be. I knew about Syringomyelia (SM) and was able to notice symptoms that had been diagnosed as allergies, ear infections but deep down I knew there was something more and I demanded her vet refer me to a neurologist. What if I did waited it out longer as the vet told me? I thought I caught it early enough if anything he would say mild. Had it not been for Ollie, I don’t know where Ella would be right now. Ella did not act like some of the dogs I saw on YouTube so how could it be that bad? Thank goodness I did not wait because it saved her from more damage which I don’t know where she would be now.

Every dog has different symptoms but this is what I noticed with Ella

I started to notice something was off with Ella probably when she was about 2 years old. She was almost 4 when she was diagnosed. It was nothing major, it just seemed like she scratched more than usually. I tend to notice everything about her. Her vet said that it was probably food allergies so we changed her food and I didn't really think anything about it. .Then several months later she just looked funny walking up the stairs. I can't describe it but no one else could see what I saw. I even took her to see her vet to watch her go up the stairs. I felt like someone taking their car into the shop and it works only when you are their. People thought I was crazy. She would put one paw in front of the other and she always seemed to walk on one side. She always seemed to scratch at her ears, which was diagnosed as an ear infection. All of these things may sound like typical dog behavior and some of it could be but looking back on it, they were pieces to a puzzle.

It was probably in April 2009, I noticed the lack of energy at the Dog Bar.  would think she was just tired from day care. I would laugh and say what is wrong with you? At her birthday party she would seemed not her playful self. She would move away at times and Ella is a very social girl. Check her out on the Bar!

The other things I noticed was the restless nights. She seemed to never get comfortable. Always making a bed or rubbing her face on the covers. I heard about the "phantom scratching" and I didn't really see that. I started to look to see if she was scratching on one side. She was always scratching on one side. I paid close attention to all the things she was doing. It then went downhill real fast. In about two weeks she was hiding under the bed, under the table, laying on the floor, shaking her head constantly, hardly able to walk up the stairs, dullness in the eyes. Again I went to my vet and he said not to jump to any conclusions it's probably an ear infection and allergies and we still want to rule those out before I recommend her go to a neurologist.

I knew she had Syringomyelia. That weekend I took her to my cousins house and the thing Ella likes to do more than anything is run after the ball. I threw the ball and she was did not move. I started to sob. I called and demanded for them to let me see a neurologist. She went that following Monday. I thought I caught it before anyone. My friends did not even think she needed to see a neurologist so when it was severe I was shocked. I think it was because of the rate of her progression.

Now that I knew she had it, the hardest part of Syringomyelia is deciding what treatment option to take.

I can not recommend which is the best option because it is different for each dog. I wish I could because you don’t know how many times I read questions asking what should they do. Her neurologist said he could not tell me she would be around in 3 months and I couldn't live with that. She had a severe case and it was progressing fast and medication did not seem to do anything. Different medications work for different dogs and I did not feel I had time to experiment and I did not want any more damage done. She had surgery a couple of weeks later. It was a tough decision but I do not regret it. She continued to be on several different medications however I started to notice some symptoms again and my heart sank. I learned in September she developed scar tissue and she was actually worse than before even continuing on medication management. Now I am faced with another decision which I still don’t know what I am going to do. I don’t regret making the choice to have Surgery because I don’t think she would be here now but I don’t know. Actually in September, her neurologist said again that since with surgery, medication, and having the results show that it actually was worse than before in just 6 months, I did not think we would make it to the end of the year and look at us now. I am constantly reminded of how lucky I was to know about this condition because if I didn't I do not know how much damage to her spinal cord would have been done.

I have written several posts about this past year and to sum it up in one post is hard. Each dog is different in regards to symptoms, severity, reactions to different medication, and progression. I have listed some helpful links because I can only tell you about her.

Ollie and Ella are not alone. Ella was diagnosed last January and this past year I have met several wonderful people, heard other stories, read research (which I still am trying to understand), heard stories from breeders, saw Pedigree Dogs Exposed, learned there is a lot of politics, tried to figure out what I could do, and I am still searching for answers. One thing I know is that it started for me with an owner and a love for her Cavalier and has led to a fight to help others not go through nights of tears and heartache and a passion to help save a breed I love so much. Any Cavalier owner who loves this breed needs to know that there are many people trying to save the breed which is in now their future is in their hands. So please take her story to heart because if you have a Cavalier you may not know it but they too could have SM and you don’t even know it or ever will. If you are not going to bred your Cavalier and they have no symptoms, then it is not something to go run and get an MRI.

I am not a researcher, breeder, expert, but I have a love for Ella which now I have a new understanding of what is really important to me. Because SM is asymptomatic for a lot of Cavaliers, it can be passed on with each new generation. That is why knowing about SM breeding protocols is so important.

For the Love of Ollie, is not only a great book and is something I am so thankful I got but the proceeds were used to help fund research for SM that should be recognized. In fact there are several research projects. Ollie helped Ella in the beginning, but it is a special Cavalier Rupert that is giving me hope for the future.

Rupert is very special to me and I hope someone else will talk about him and Rupert’s fund but you can find my post here.

So to go back to the beginning of Ella’s story, I will quote Sandy Smith.

Think Big Start Small- "to the world you are but one... to me You are the world"

I have been thinking of so many big issues and even though I think they are important, I need to be reminded of the one thing that makes the biggest change. That is knowledge, support, and spreading awareness. I have been contacted by people who have read my blog and her story has touched others. I met a very special person Tania who has the website Cavalier Matters who told me about Cavalier Talk. Through that I have met many others and have been given information, support, and will always be thankful for that.

The day I got the e-mail from Tania, I was so happy. I felt that someone cared and I know there have been many others along the way, it was that realization that helped me. I also have met Jana who writes Dawgbusiness, who wrote about Ella’s story and helped her get another MRI. She does not have a Cavalier but does know what it is like to go through loving a dog that has major health issues.

This is quoted from Rupert's Fund.

"Because SM is a progressive condition -- meaning it tends to develop slowly over time and may not be apparent when affected dogs are younger -- finding older cavaliers with little or no SM is especially valuable to determine how it is inherited and help breeders identify promising lines. But time is running out. With every new generation of dogs, lines are further mixed. Some old, probably healthier lines have disappeared already. The chance diminishes of finding the fully clear dogs that could provide a genetic rescue plan."

Please look at these websites from people active in keeping this breed around and healthy.





In memory of Ollie and Rupert, please share their stories and read about this condition and learn about the importance of knowing health issues.

Thank you,

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