Ella’s 1 Year Anniversary and CM/SM Awareness Event

I am so blessed to have loving friends on Facebook who put together a CM/SM Awareness Event on the anniversary of Ella’s death. It has been a very hard year but somehow knowing that her death brings awareness to this condition is somewhat of a comfort. Ella’s blog will be shared with a cavalier group on Facebook. What can I say to those that did not know Ella or do not know about CM or SM? I think the first thing is that Ella was brought to me during a time when I needed strength. We were inseparable. We came as a package and it was known that if Ella could not come then neither would I. That bond only got stronger when she got sick. I would do anything for her. I could not believe that even when she was in pain, her tail would not stop wagging. She would still want to comfort me even on that last day. I knew it was her time and her body was falling apart but she had a little bit of energy to come out in the grass with the sun shining on her, tail wagging. Now what about Syringomyelia? What is it that I learned the most? Chiari Like Malformation (CM or CLM but I say CM also called COMS but that is outdated) and Syringomyelia (SM) are extremely complex. No two dogs are alike and the more I learn the more questions I have. Syringomyelia is not just a Cavalier issue. I have shared the story of Winston the pug. There are several toy breeds that can get Syringomyelia. : http://cavalierhealth.com/syringomyelia.htm#SM_in_Other_Breeds “Other breeds known to be affected by Chiari-like malformation and syringomyelia include the Affenpinscher, Bichon Frisé, Boston terrier, Brussels Griffon (Griffon Bruxellois), bull terrier, Chihuahua, French bulldog, Havanese, King Charles spaniel (the English toy spaniel), Maltese terrier, miniature dachshunds, miniature and toy poodles, Papillon, Pomeranian, Pugs, Shih Tzu, Staffordshire bull terrier, and the Yorkshire terrier.” Then again this is a cavalier issue! Yes we know a lot more because of research but it still is a problem in this breed so it must be talked about. An MRI is the only way to diagnose CM or SM. There is a lot of focus on SM but CM can also cause pain. Some cavaliers with CM only are symptomatic while others with both CM and SM are not? That is why it’s important to understand when your dog is in pain http://fightforella.blogspot.com/2011/07/dogs-in-pain-its-in-pain-know-whats.html How did I know Ella had SM. http://fightforella.blogspot.com/2010/02/news.html There are many symptoms but looking back on it Ella didn’t scratch much which is what most people think of when they think of SM. What I saw was the pain in her eyes. She also did a lot of head shaking and had some quirky behaviors. What one thinks is funny or a quirk is really a sign of something else going on. There is no cure for Syringomyelia but I do know of Cavaliers that have lived long lives with their symptoms being controlled with surgery and or medication. http://fightforella.blogspot.com/2010/04/there-is-no-cure-for-syringomyelia.html I can’t really sum up my blog in one post for this awareness event but I can say that I am glad I wrote this blog and hope that in some way it has helped at least one person who is or will be going through this also.

A Dog’s in Pain, it’s in Pain. Know What’s Going on and Treat Symptoms

Ok, my post title is not the best but I think this is a very important topic.  A couple of things have been bothering me lately. You would think that when Ella passed away, I would forget about SM but it’s on my mind everyday like the awareness bracelette a kind friend gave me.  

 Sometimes we need to look at things from what your dog is saying.

There's nothing wrong with Ella, she's not like those videos! You and your neurologist are wrong....

Look at Ella's eyes in the picture above. It's not the best picture but maybe you can see something in her eyes? You can't make it out but I could look into her eyes and know how she felt.  Just because Ella did not scream in pain, scratch so much, or some other things, did not mean that she did not have this sad look on her face. I knew something was wrong deep down and that is why no matter what people said, I knew she needed help.  She was able to get treatment and things were adjusted to have days where she was so happy.

Does the picture above look like a dog in pain? She was being treated and that treatment had to be adjusted accordingly. First and foremost she needed to be treated. So why am I telling you all of this? Well when Ella was first diagnosed, I was hung up on the words "severe SM". I looked at books, tried to figure out her syrinx location, how wide it was, what her prognosis was etc. but take all of that away and what really mattered was this SMILE.

Now I know that Severe SM are just words. This may shock some but I never thought about her true diagnosis CM/SM. I just jumped to the SM. You see the word Syringomyelia talked about a lot and now little by little people are starting to talk more about CM (Chiari Malformation). Sometimes I don't know if it was her CM or her SM that was causing her pain. Why does it matter now? Well, I have friends that have Cavaliers with CM alone that act like Ella did.

I can not describe what it is like to have a dog with CM only and still exhibit signs of severe SM? I can tell you that I DO know what it was like when people thought I must be wrong and Ella is fine. Whether it was severe SM, the CM she was not fine and that is why you need to know what's going on.  Here is the best post and a must read so you can understand that SM awareness should be CM/SM awareness or just support for those that have dogs in pain. You know even if a MRI says it's mild, if the Cavalier or dog is not doing well, then well that's not good. Next time you hear someone say the MRI should no SM or mild, but they were describing a dog with severe symptoms, think of that and not just the diagnosis.

Please read Miss Kodee's Blog Post below and this wonderful post and also check out link for "How to Tell if Your Dog is in Pain" 

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

Below is a picture of Ella and I on her last day on Earth. CM/SM did not take her life, but more on that later...I knew something was wrong but did I miss something?

Embee Cavaliers: Cavalier King Charles Spaniel breeding dogs, and M...

Did you know that Molly won Best in Show last weekend! Some say breeders are more concerned with winning than health. Well I can tell you Mary Beth done so much for Cavaliers for education and promoting health, she definately is someone who disproves this statement. Way to go Molly for winning Best in Show and thank you Mary Beth for your continued dedication to this beloved breed.



Embee Cavaliers: Cavalier King Charles Spaniel breeding dogs, and M...: "Did you know? Approximately every other month, Cavalier King Charles Spaniel breeding dogs are MRI'd in Southern Ontario, at Matheson Blvd...."

Acupuncture and SM

Ella responds extremely well to acupuncture. Even though I know it does not benefit everyone, I am glad it does help her. Her neurologist actually does this for her but being there you can tell the difference. I have actually had acupuncture so I know how beneficial it can be. Of course now I do everything for her health!  It starts out with them inserting the needles and then I stayed with her for maybe 10-20 minutes. I did not keep time but she began to slowly get more relaxed. It was funny seeing her try to hold her eyelids open and them begin to get heavy until finally she was out! When we were done she was wagging her tail and so happy. I just knew how much it helped her so it felt good to see some positive signs. Here are some pictures and a video from the visit.

AND SHE'S OUT!

Video of Acupuncture

Staying Strong and Positive- Ella Update

"A strong positive mental attitude will create more miracles than any wonder drug"
Patricia Neal

Ella is a fighter and extremely brave but she looks up to me for answers. Sometimes I just feel like I want to cave in and say I can't do anything except not doing anything is giving up. We can not give up hope because it is that hope that keeps us strong.  If I am not strong for her, then she is worse. I have to make her happy and enjoy every precious moment I have with her. I can not focus on the future except the positive.  So many people can be negative, blame others, make excuses, but what good does that do? She is looking at me for answers and even if I do not have them right now, I will do everything in my power to keep strong even though that is the toughest thing to do.

I was talking to a friend who has a Cavalier and has gone through this and she said she spent a year depressed and it almost killed her. She told me how important it is to be strong for Ella. I have known that from the beginning. Everyone says stay strong and it is very hard. I feel like dogs and especially Cavaliers can feel what we do. I was actually looking at a book of the history of the Cavalier King Charles Spaniel and the first Spaniels were actually known as "comforter spaniels". They were used in hospitals, used to help the ill, used to keep people warm, keep pests away and I know from personal experience how she has healed me in a time of illness. Now that she is sick, I can not have her be my "comforter". I have to be the comforter to her. It is time to pay back what they have done for me and others for several years.

With Ella's eye problems from the dog attack and not knowing what her prognosis will be, I had an appointment Thursday with both the optometrist and her neurologist. I wanted to see the neurologist first because I wanted him to see what our next move is and I needed to know what is best for her. If her eye is not bothering her or if she doesn't have long, do I really need to go through surgery? I don't know how long she has but I hope it is a long time. I did not want to hear him tell her optometrist her prognosis but he did talk to him. I just think there is no good to know because they can be proven wrong and I am not going to give up hope but it is important to know in order to make this decision.

Then I Hear Some Good News

The optometrist looked at her eye and said he expected so much worse! She was actually scheduled a month ago to have surgery but I waited because I just had a feeling that I needed to focus on her SM. Her eye did not seem to bother her. She was not scratching at it and if I can spend money on her other things that is where my focus would be. It was a tough decision and even though it weighed on me, I really wanted to sit down and discuss it with both before I did anything. You never know if you make the best decision but knowing that  I trusted my instincts and waited makes me feel so much better.

I asked him if it had anything to do with what her neurologist said. I could not help it but I wanted to know if maybe he said something that determined what he was saying.  He told me that it had improved and really without SM, he does not think he would suggest to have it removed anyway!!

So hope and trust and a little miracles can do wonders!

For the Love of a Cavalier: Come together to bring Awareness

The recent issue of Dogs Today Magazine said “Health Update: Can the Cavalier still be saved?” Ella is a fighter and I wish I had the strength she has but YES we can! I have been blessed to meet so many great people on Facebook who love Ella and I love their Cavaliers and we all have the same thing in common, “We a Cavalierish World”.. I am so thankful for Felissa who has put together the Syringomyelia Awareness week on her blog www.twolittlecavaliers.blogspot.com and also Miki and the Facebook group “We love a Cavalierish World” who started the Facebook event because I feel it’s important for anyone who truly loves this breed (Cavalier owners, breeders, people who show Cavaliers, clubs) it doesn’t matter except that we all come together and recognize that SM is a problem and we can do something to help the breed we love so much.




“The greater the loyalty of a group toward the group, the greater is the motivation among the members to achieve the goals of the group, and the greater the probability that the group will achieve its goals.”

Rensis Likert



Keeping quite and not telling others and raising awareness is hurting the future of the breed and also making more people go through what I have and I would not with that on anyone.



“Being ignorant is not so much a shame, as being unwilling to learn”.

Benjamin Franklin



I did not know what SM was when I got Ella but know I know what it is like to have a Cavalier with severe SM so I did not know what questions to ask to make sure I choose a breeder that was following SM breeding protocols to help reduce the chance of her developing this condition. So many people do not know about SM but I am sure they do not know that there has been research going on for years to come up with a way to help our breed.


“Don't make excuses. Make things happen. Make changes. Then make history.”

Doug Hall

Now here is the good part. We have this outlet to help others. Learn from stories and hear how there are people that are making a difference and also what we can do to help!

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.



http://www.cavalierhealth.org/
http://www.rupertsfund.com/

http://www.veterinary-neurologist.co.uk/

http://www.sm.cavaliertalk.com/

http://www.cavaliermatters.org/


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,

Learn From Ella

This Thanksgiving I was with my family and I have a lot to be thankful for especially having Ella with me this year. One thing that did upset me was how my aunt and uncle had fallen in love with Ella and decided that if they ever got another dog it would be a Cavalier. They told me that because of her health condition, they are now reconsidering this.

When someone sees a person they care about go through the heartache of having a dog with SM or another health condition, it can have an impression on them too. I don’t want Ella to suffer but if she is, then it should show people how important it is to find a breeder who will breed for health. I think Cavalier King Charles Spaniels are the best breed and I will always want one and suggest the breed to others, however, it is important that if you get a puppy to make sure the breeder is doing health tests to help prevent this heartache.



I am especially thankful to have met someone on an SM forum that has shown me the side of a breeder, showing Cavaliers, health issues, training etc. and also has been a shoulder to cry on. She showed me that there are great breeders out there and that are especially concerned with this. I emailed her because I was upset and asked if she knew anyone that is following the SM breeding protocol. She said there are and gave me some names. I want my uncle and aunt to have the joy I have had of bringing a Cavalier King Charles Spaniel into my life.



I would like to point out a couple of things I think are important.



• Even great breeders will have a puppy that will develop a health condition and it is upsetting to them also. There are no guarantees but the good ones are doing everything possible to keep the number limited.

• Not all breeders are the same

• Ella did not come from a puppy mill or Back yard breeder (BYB). Her parents had several health tests done but at the time did not do any scanning for SM. This is why I feel that all tests are important.

• The CKCSC-USA and the ACKCSC are not just for shows. They have valuable information and they want to help the breed. The breeders that are members of these clubs and regional clubs are a good place to start. The clubs have ethical guidelines and recommendations but it is still important to make sure to still ask the questions to see if the breeder is following things.

• Get involved. It’s up to the pet buying public to push for breeders that do more health tests.

• The price of a Cavalier does not mean that it is better. If you want to save money and get a Cavalier from someone not doing tests, you probably will be spending more in the long run if your puppy has inherited health problems. If money is an issue, think of adopting. There are many Cavaliers that need a good home and sometimes good breeders will have older Cavaliers that they were going to show but did not end up being show quality.

• Buying a puppy is not something to do on impulse. Take the time to learn about the breed, research what questions to ask breeders and what to look for, it will be well worth it in the long run. You may have to wait if you find someone that does not have available puppies, but the wait is worth it especially if it means you may have a dog that is with you longer in the long run.



I am going to get a checklist together for my aunt and uncle because I do want them to get a Cavalier because I see how their eyes light up when they see Ella. (I gave my uncle a baby Rupert to love on). Don’t give up because now is the time to promote the people who are breeding for health. What we have gone through is painful, but it does not have to touch more and more people. Please learn from Ella and thank the breeders who are following SM breeding protocol and pushing for a healthier breed for the future.

I read somewhere that doctors would prescribe the Toy Spaniel (Cavalier King Charles Spaniel) for people with an illness. Now its time to return the favor.

A New Meaning to Man's Best Friend- Canine Genome Research not Just for the Dogs

Cavalier King Charles Spaniels are not the only ones who suffer from Syringomyelia and Chiari Malformation.  Humans also suffer from this painful condition but it is not nearly as common as it is with a Cavalier.  Bobby Jones, a famous golfer, was diagnosed with Syringomyelia which eventually restricted him to a wheelchair. 

Can Cavalier King Charles Spaniels provide the clues of this condition?

Yes, in fact recently with the Human Genome Project gave valuable information on understanding genetics. I am not a scientist but this YouTube Video explains that with we are not that much different.  Dr. Clare Rusbridge along with others started to build a DNA database and has already had some major discoveries.  They believe to have already found the genetic region for SM. This is all thanks to Rupert's Fund along with other organizations that have contributed. Here is a document that describes more in scientific terms.

The American Syringomyelia and Chiari Alliance Project

They wrote about how dogs might just be the answer to some of their pain. The genetic understanding and research would be extremely valuable information. Thanks to the worldwide campaign they were hoping to be able to pinpoint this gene. How great would that be for human kind!  It looks like Dr. Rusbridge is on the right track.

They could get a better understanding of how things develop. How it passes on through certain generations. Since there are more Cavaliers and other dogs Friends of Lola with Syringomyelia and that the generations can be traced gives scientist knowledge and humans hope. 

What a pet owner of an SM dog can learn from a human

I always wonder what Ella goes through because she can not tell me. Sometimes it is hard to hear people talking about the terrible pain but it makes me understand more.  We need to learn from each other.

Don't Give up on a Breed

Purebreds do have hereditary conditions. It is easier to pinpoint these health issues because they have several generations and history. Understanding and being able to trace this valuable DNA, may do wonders for mankind.

http://www.youtube.com/watch?v=O6MEpJK0eN8

Please see futher information

Dog's Provide Chiari Clues http://www.conquerchiari.org/subs%20only/volume%203/issue%203(11)/spaniels%203(11).asp

  Dr. Clare Rusbridge Website detailing finding the gene (s) for Syringomyelia

And As Always Please Visit Rupert's Fund-

Meet Rupert, A Bright Flame and a Very Special Cavalier

When I looked up the meaning of the name Rupert, it said it is a German-derived name that means Bright Flame. I did not know what it would say and hoped that it would somehow come close to describe Rupert, but I was amazed at the words that came before me.  I did not have the privilege to meet and know who Rupert was but what I do know is that he has touched many lives. I asked his owner Nikki to tell me some things about Rupert so I could get a better picture of his personality. You know each Cavalier has such amazing personalities! This is what she told me that he loved and a little bit of his personality which made me laugh :) The italics is what she said and I added my own comments

Rupert loved

people, other dogs, particularly Cavaliers. He loved the beach but also running in the woods, we invented a game chasing pine cones"- Hmm a game of chasing pine cones. I wish I could have seen that one!

"He adored young people - used to lie back in my friend's daughter's arms, she was about 14 at the time and loved him dearly, she'd spend ages cuddling him and rubbing his belly!

He enjoyed obedience, also did a bit of agility for a while.

He loved visiting other people's houses - would sit in their dogs' beds LOL- Oh Rupert! Trying to be the man of the house!

A vegetable rack was a self service restaurant to him!- At least Rupert wanted to eat healthy!

He could be incredibly naughty, he would just get a certain expression on his face and take off when we were out sometimes, but he wouldn't go that far, he thought it was very funny!- I thought that Ella could be naughty and I definitely know the expressions but pictures say 1000 words.

Now that you can get an idea of his personality you can see why a Fund was started in his memory. I would wanted to know Rupert because of what the fund has already started to do! I am not scientific so visit the website to read a better description.  Basically the researchers that have been busily trying to find a way to prevent less Cavaliers go through what Ella has, the researchers believe they have been able to pinpoint the genetic region of SM which is huge. If that isn't enough, they may be a protective element. I tried to read the report but it was very technical but this is so much hope.

All of this could not have been done because of Rupert and all the donations to his fund. I wanted to point out the success but the fight is not over. We still have a way to go and Rupert's Fund is providing a means to give the valuable research so that we can move forward.

I can not lose track of the main goal. That is bringing awareness but also stress that this is not a battle to give up on. Sometimes I get frustrated with the condition but I have never blamed her breeder. I just want pet owners to be aware and pass on the importance to know what issues are going on with our breed. 

I read today from someone who has a Cavalier with SM and her first vet misdiagnosed her as having allergies. This is very common and actually what happened to Ella. What she did is something we all can learn from. Once she found out the correct diagnosis, she went back to her first vet and gave him information on Syringomyelia so that he could be more aware of what to look for. She did not blame the previous vet, but educated him so that he could help others.



Please visit Rupert's Fund website Rupert's Fund website: http://www.rupertsfund.com/




Despite everything he was such a happy boy with a real joy for life.






She continued by saying: I hope that gives you a picture of him - we miss him every day, he was our first Cavalier and was just so very special, we were honoured to have him in our lives.


I wanted to end the day on a positive note. What is being done and what you can do. Pass on the information. If you can donate to Rupert's Fund, but if not then just share his story. Pass on information about Syringomyelia and most of all love this breed.


So here is to Rupert! A Bright Flame that will live on forever. If you read his story and what he went through but continued to remain happy, that shows true courage.  The Bright Flame will show in the eyes of future Cavaliers that can be more healthy because of his Fund.

Another Surgery or Post-Surgery Soundwave Therapy?

I wish things were clear but they are not. It is so important to get as much information as possible before making any decision regarding health or in general. Actually even before buying a puppy but that is another issue.  I am a member of several forums and asked some people for information after I talked more with Ella's neurologist.  I have read about Post-Surgery Soundwave Therapy on Cavalier Health and wanted to know if anyone had experience or could give me some input. I have also asked if anyone had gone through a second surgery. What is interesting is that no one responded to the second surgery experience but I had a couple of people tell me some positive things about Alphasonic Soundwave Treatment. 

The actual machine is expensive but there is less risk. However, surgery is concrete. I know there is more risk but due to Ella's progression do I want to take the chance with Soundwave therapy? There is a local animal hospital that offers rehabilitation therapy, Steele Creek Animal Hospital. They do not have the actual Alphasonic machine but I did not get to talk to the Doctor but I did talk to the tech and it seems to do some of the same things.  Ella's neurologist said I could give it a try but I would not know if it is helping and then would I need another MRI. What if it doesn't help?

Yikes!!! I know one thing for sure! I am not going to do nothing. I am not going to give up and I am going to get as much information as I can so I can make sure I feel comfortable that I am making the best decision.

Just look at her! Would you give up on her either?

Ella Update. New Decisions

I met with Ella's neurologist today to go over her recent MRI results and to talk about what to do for her future. Before meeting with him, i wanted to get as much information as possible. I posted on forums and asked if they could offer me any insite. When people first learn their dog has SM, they want to know what to do. Surgery/medical management. I have people contact me about Ella and ask what they should do. I have always said that the decision is really only something they can make. You can not compare each dog because it is so different with each dog.

I wanted information and i know that the decision will ultimately be up to me.  I would like to say that even with Ella's surgery not giving the results that i had hoped for, i would not change it. The reason i decided to have surgery was because i felt her SM was progressing fast and she was medication seemed to not help. Today i know i was right. Even with surgery which initially released the pressure and allowed for the csf fluid to flow and with several medications, Ella did not improve. In fact she is worse than she was before. If i did not have the surgery would she even be with me now? I dont think so.

Ella having the MRI proved what i had been fearing and even though it was not good, i have the information that many people do not. I needed this because of Ella's progression. There are many things i learned today and one thing is how i have said many times the variations with each dog. One thing i wanted to ask about was the size of her syrinx which i had learned had increased in size. There is hope that surgery will reduce the size but in Ella's case it grew from .35 to .53. That is a pretty big difference in such a short period of time.

My question to Dr. Brofman was that i have read studies with dogs with larger syrinx size and even Ella has a friend with a syrinx .9 (who just had surgery) but Ella seemed much different. He told me they have determined that it is not the size that is as much a factor but the location. Ella's is located at the top and at the worse place. He said this is why she can show different symptoms.

I knew progression was bad, location bad, medication not doing what it should so i asked about alternative therapy. I actually learned a lot about this from a couple of people but he said that this is not a solution. I would like to point out that it was not because he does not believe in it because he actiually will give Ella accupuncture, but Ella really needs something more.

He talked about another surgery that would be done to remove the scar tissue that is blocking the CSF flow. He said the risk would be if the the scar tissue has attached which he will not know until surgery. If that is the case he would have to carefully scrape or remove each tissue. This is where risk comes in. it could cause complications that result in perminant neurological damage. It is not a given and i asked what the odds were and he said that there could be swelling, hemeraging, but he could say it was not as much as i feared.

He would put in a bone cement to cover the space that was removed to help prevent scar tissue to develop again.

We briefly mentioned shunting which he said he would not consider.

So this is where my story is different. Many people dont know at first how their dog will react to medication. They dont know if it will even progress. I could say i am unlucky and wish Ella was like a lot of the others, but i am actually very lucky that i got the MRI because i know a lot of things that make it clear how fast this is for her and even with the subtle signs, i fear where she would be a month or months later.

Ella's neurologist is going to work with me and if i do decide on surgery, he will keep the cost as low as possible since he knows my financial situation. 

I just found out all this information today and i would tell anyone who is going to make a serious decision to really think about it.  I know i can not do nothing and watch her get worse and suffer more pain. Putting her through the risk of surgery is scary and i have to figure out is it the best thing for her.

Someone in my family said no one would blame you if you let her go. I know how much it put you through and how hard it was. It was shocking because the only thing that concerned me was not what it would put me through, but what it would put Ella through. Am i going to do this for her or for me? If she was old and not have the life i see in her would be one thing. It would be selfish to keep a dog barely alive just because i could not let her go.

Ella has a lot of life, love and so much to give. How in the world could i watch that slip away. I did put my life on hold and it has been tough on me, but looking at her and seeing her smile makes everything worth it. She saved my life.  I am not going to give up. I am going to do everything i can (no matter if it is hard) for her. She is the most important thing and i care about her more than anything else

Why knowledge is important even if it is not easy to accept

Throughout my blog i have been thankful for knowing what syringomyelia was so i was able to see the symptoms in Ella.  If you are reading this blog then you already know about syringomyelia (SM). Either from Ella's story or they are going through it with their own loved one. I have several points and realized a lot of things recently when I saw signs that Ella's surgery was not as successful as I hoped and was scared to get the results from her MRI.

Let me start off by saying how thankful I am for people supporting me and also shared Ella's story on their blogs because a lot of people have never heard of this condition.  I have always wanted to spread the awareness of SM because I know how it gave Ella more time and less suffering. This also gave me the opportunity to get the information I need to see what damage has been done and what needs to be done in order to cause less damage.

How could I who has stressed how important it is to see the signs not be the first one to get this done. Well besides the issue of finances, I have to also admit I was scared to face the truth. 

People want to read about happy stories. It is even an issue about how some feel that talking about the health problems with cavaliers is something that to hide.  Even trying to talk to friends with cavaliers, I found they did not want to know the truth. I feel that most people feel that unless that they experience it, then they dont care as much. That is true with a lot of things. 

I want to explain why it is especially important for people to know about this condition especially if they are an owner of a breed that can have this condition.  The hard thing about this condition is that seem like normal behavior.  I will prove this in my next post about Ella's recent visit to my mom's house who said she could see nothing wrong with her. 

I said in another post that if you know about this condition what are you going to do with this knowledge? The best thing anyone can do is to spread the word. Help another dog. Tell your vet. I know that many people just want to see a cute smiling face and pretty eyes of our Cavaliers, but read on about what is being done to help less have the eyes of pain that I have looked into when I look at Ella. It may not be easy and it may not be what you want to learn about what is going on with the breed but it is important. It is important to know what is being done for the future of others with research. It is important to help another know what to look for.  Please if you read this post, continue to read the next ones. They will tell the story of how SM is hard to see. I will also tell the good news about what is currently being done and has already had progress in helping our breed that is already known for health issues, have more without these problems.

Ella's results were not what I wanted to hear but I am glad because it might have caught the scar tissue before it attached.  Think about it. Spreading the word might help another before it progresses. Helping with research could save the breed.  Is it easier to turn a blind eye and not learn the hard truth, yes. But the truth will be what will help many others.

The Results- How much worse without support & the future

I have had several people prayer for a good report from Ella's MRI and I know that I did not want the results that she had.  It was worse than before and I am going to meet with her neurologist on Tuesday to look at our options.  Options that I would not have been possible without meeting (online) Jana Rade and telling her about Ella through some weeks, I would not be able to know this and be able to have a plan to fight it.  She took interest in Ella and kept asking her how she was doing. I know I was seeing signs and I did not want to face the truth because an MRI would cost money and then if the results were bad, I would just feel helpless.  She did not want to accept this. Going through Ella's first MRI and Surgery, I was searching for anything I can do to give her the best I can.  So Jana spread her story and it kept going.  This blog even talks about it http://www.dancingdogblog.com/2010/08/be-the-change-for-pets-4-ez-ways-to-take-action/

Jana said knowledge is key and you can't be in denial.  She pushed me and thank goodness because I really need that time. 

I am thankful to the people who helped Ella but also thankful that her face told the story.  A story about a lot more issues than just her.  She is an extremely special dog and I know there are so many others but I want to say that it was hard for me to get and pay for her MRI and treatment.  I am a pet owner but if we can help the others that are trying to help it not continue, then there will be many others that will benefit.

This post from Kim Cline really tells a story also and what she said about blame and what we do going forward is inspiring http://thisonewildlife.com/dog-health/breeding-dogs-vs-inbreeding/

"By the way, I have to thank Jana Rade from Dawg Business for introducing me to this film. Interestingly, Jana wrote a post back in January about our ability (or lack thereof) to detect a dog’s pain and how much they stoically hide.







http://dawgbusiness.blogspot.com/2010/01/word-on-pain.html






I came across it while writing this post and realized how much our dogs chronically bear before giving us a sign. It makes me hurt for those who suffer in silence from faulty bone structure due to breeding for extremes. Again, how could we know without being educated on why animals hide their pain?






At the end of the day, it doesn’t matter what we may have known on some subconscious level – although I think you’re right because it’s less than shocking when all the pieces click. What matters is that we certainly know in this moment. When we know, we are held accountable – without excuse. What matters next is what we do with that knowledge"

I can not tell you how special the people are that have given others help and care that is so important.  So how do I pass this on?  What am I going to do with this knowledge? I started this to tell her story and really wanted to help others going through this.  I have met some wonderful people and learned a lot of information. 

So I will not give up hope.  I do not want Ella's story to make other people who also have dogs with Syringomyelia to get discouraged. I have said many times, each dog is different and I would not change any decision I made.  I will be there for others as much as I can. 

Most importantly, I want to pass on and help support the people who are doing things to help this and other breeds so that less people will have to go through this. 

It is a matter of knowledge.

• The knowledge of what is being done.
• Knowledge to potential pet owners at how important to make sure breeders are doing what they should for the health of the dogs.
• Knowledge that there are many people that are really concerned about these things.
• Knowledge that there are people that are selfless and have so much love for others and give. 
• Knowledge that what can we do to make sure less dogs are in pain.

I have heard a lot of people say things and if Ella's story makes someone realize that there is more and there are good people, breeders, scientists, and we should acknowledge them. 

So I will continue to post and thank you for all the positive thoughts, words of encouragement, prayers, and so much more that have helped me beyond words.

Spreading Awareness of SM and Ella's Story

Ella's story and the comments I read about her touching other people were amazing.  This blog has many posts (which I hope people read) about some of the issues that is faced with Syringomyelia. Each dog is different and Ella is just one of many.  There are dogs with Syringomyelia that never show any signs, ones that do well several years on medication alone, some that even with medication still progress.  I wanted to give support for others and also spread awareness.  There are so many people that don't even know about this and do not see what people are doing to try to make sure breed healthy puppies.

I was so lucky to get support and donations to help her get an MRI. Ella had an MRI which I thought was going to be covered by her insurance. That does not matter because she needed it and when I found out that it was severe, I knew I had to have surgery even though I could not afford this. I have a post about surgery vs. medical management. It is important to know that each dog is different and reacts differently to medication. Ella was not having any improvements. Even with her surgery, I am starting to see her get worse. Yes, I could keep trying different medications, but I need to know how bad or even pray good she is. 

I am so thankful for donations towards her but also thankful that it brought awareness to others. Not only because of her story, but because I read comments that people have never heard of this.  There are many people and organizations that have always been on this website, that I feel are important for the future of this condition.  Just knowing how much it can cost me to have an MRI, think about the breeders. If a potential Cavalier or other breed did not know about this, would they know to look for breeders who are scanning their dogs to try to prevent the puppies from developing this? Those breeders should be supported. 

Rupert's Fund was set up to scan older Cavalier's to find clear lines and the Canadian genome research (according to the Rupert's Fund website) has "already has pinpointed the likely areas of cavalier genes where SM is carried"

I would like to add that when it is your dog, it is hard to think of anything else but helping her. I have mentioned to others that I want to spread and help with Rupert's Fund. Things do not stop with Ella. I will always know and strive for the health of not only Cavaliers but others. I will be there for others because I know how it feels to think you may lose your beloved.  Ella is everything to me. I don't know how I would handle not having her. When she is in pain, it kills me. I hope you read her blog and others understand that their are more than her.

Her story has touched others and brought awareness and I will always be thankful.  Jana wrote this on her website www.dawgbusiness.blogspot.com which is the best thing and explains in words that is so important. Bringing awareness and maybe one other owner can benefit from her story. Read more about the symptoms and also the concerns. Maybe see things, like I did, that helped prevent more damage. I will tell the story about Corey next.

A response and comment Jana wrote on her blog.

"It is my understanding that it is the severity of the case that either does or does not warrant the need for surgery. Ella's situation was such that it did call for surgery.




We had been through a lot with our Jasmine in last two and there were times when we were asking ourselves whether we would be able to actually help her and provide good quality of life.



We did take some chances and they did work out for Jasmine who is now doing great!



I chose to help Ella because situation like this feels very close to home to me. I believe that whatever the decision it should not be based on financial situation. We do lose a dog in the past because we couldn't afford the veterinary expense at that time. It is a horrible feeling.



I believe that even though this is an individual cause it does a lot of global good. Having a face to go with the situation does speak to people's hearts. Many people heard about syringomyelia for the first time because of Ella. That is Ella's contribution to the other dogs suffering from this condition.



Personally I was moved by Ella's situation not only to try to help her, but I also plan on pursuing this issue further in terms the importance of responsible breeding practices and awareness of these issues.



There is much to be done, but one has to start somewhere and this is where I started.



Jana

Dr. Shore's Swine Tissue Surgery Hope for Corey

I have been reading about success stories and have heard a lot of good things about Dr. Shores at the Auburn.  You can read about Abby who went to Dr. Shores and from her story my friend is also going to Auburn for Corey's Surgery.  This is a blog about Abby  She also has some videos on YouTube.  I will let her owner tell how she is doing now but this procedure is supposed to reduce the chance of scar tissue to form.  I got the following information from www.cavalierhealth.org

duraplasty using swine tissue



The alternative of a tent graft of swine tissue and body fat is called duraplasty. Dr. Andy Shores, veterinary neurologist at Auburn University in Alabama, Dr. Jill Narak, veterinary surgeon at the University of Tennessee in Knoxville, and others have performed this procedure on at least 21 dogs, most all of them Cavaliers. Swine intestinal submucosa was sutured over the cerebellum and brain stem in a tented fashion (see photo). Fat tissue from the dog's gluteal region was then placed over the site prior to routine closure.






In a report published in October 2009 at the American College of Veterinary Surgeons' annual symposium, the researchers stated: "Overall, recovery was considered to be good to excellent by owners. To date, none of the patients that have undergone this surgical procedure have required further surgical intervention due to postoperative compressive scar formation that has been reported in the previous literature. Follow-up time ranges from 1 week to 1 year. ... The use of the titanium mesh, placement of the screws, and the exothermic reaction of the overlying methyl methacrylate may contribute to tissue trauma. The authors conclude that with the results of this study, this procedure is clinically effective and the use of a titanium mesh, additional hardware and methyl methacrylate offers no advantage in canine COMS patients."

Corey's Surgery is next Wednesday so please keep him in your thoughts.

Staring into the eyes of a cavalier king charles spaniel & now seeing pain

One of my cavalier books from barrons said: "if the eyes are the window to the soul, the cavalier king charles spaniel has the kindest soul in dog-dom.  To peer into the eyes of a cavalier is to enjoy a vision of utter devotion and to fall completely under their spell." Staring to ella's eyes when she is in pain deeply hurts me. I wrote about Ella needing a 2nd MRI and that is because surgery may not have been successful.  The reason I know this is because I see the pain I once did before her surgery.  I read stories of people and Cavaliers with Chiari and Syringomyelia needing multiple surgeries and I knew this was a chance, but I had hoped it would not be Ella.

Ella used to cuddle with me on the couch but now she lays on the floor. She looks at me with those eyes of pain and I can hear faint sounds of pain.  I miss here and have to call her to come out from her hiding.  They sometimes do this because it can be painful to be touched.  How much I miss those days of her laying with me.  She has good days but recently her behavior has changed.  No one can tell you how hard it is to see this.  I posted a video of a person who can talk about how it feels, since she can't.  I will post video's of dogs that have Syringomyelia and some have lost their battle.  I am so afraid that is going to be Ella.  A lot of dogs don't even do surgery and manage fine on medications but some are not so lucky. I read articles about studies and they will say state dogs as cases and they will say was euthanized after 1 year or another case that has showed no new symptoms and improvement. 

I know I will do anything for her but I am scared.  Please pray for her.  The surgery is scheduled for September 1st. I will have my paycheck then and will need to figure out next month how to manage.  I am trying to come up with fundraiser events. I will be posting some items for sell to cover her treatment.  Please think of all these dogs that go through pain that is tough to watch.

Here is a picture of Lucy who lost her battle of Syringomyelia

my chiari story (a life of suffering)

Statistics and Surgery Success and Recurrence

There is no cure for Syringomyelia. Those words keep playing in my head. There is also no guarantee that Ella will no relapse after she has had an expensive surgery where they removed part of her skull and she spent months recovering from this procedure.  I knew that when I decided to take that chance.  It was the only chance I felt she had and if she was one of the ones that was not successful at least I did something.  I thought that would make me feel okay and I would worry about that later and figure something out then.  I just prayed that she would be one of the lucky ones.  I knew that surgery gave her time.  That was a given. It would at least relieve the pain but there is a possibility that when part of the skull is removed, scar tissue can form.  This will then cause relapse and dogs will require to have another operation.

Why has this been on my mind recently? There was a post on www.cavaliertalk.com with notes from Dr. Dewey who is a neurologist that pioneered foramen magnum decompression (FMD) surgery and spoke recently at the AVMA.  Someone took notes on what he said and his presentation was targeted to vets so most of it was not new information but reading again some of these statistics made me realize just how realistic relapse could be for Ella.  Dr. Dewey created a procedure using Titanium Mesh with the hope to reduce the rate of recurrence.  I knew about this procedure when deciding on Ella's surgery but it was more expensive, more dangerous, and at the time I did not know what the long term benefit would be.  I am going to copy from Dr. Clare Rusbridge's website who is the expert of SM and Cavaliers says in general about some surgery questions.

CM/SM – surgery





What surgical options are there?


The most common surgical management is cranial/cervical decompression (also described as foramen magnum or suboccipital decompression). The principle of this surgery is to allow CSF flow by removing the bone at the back of the skull (supraoccipital bone) and part of top of the first vertebrae. This may be combined with a durotomy (cutting the meninges) with or without patching with a suitable graft material.


A cranioplasty procedure used in human cranial/cervical decompression surgery has also been adapted for use in dogs. The procedure entails placement of a plate constructed of titanium mesh and polymethylmethacrylate (PMMA) on pre-placed titanium screws bordering the occipital bone defect (Dewey et al 2007).


An alternative method of managing syringomyelia is direct shunting of the cavity. In humans this is not a preferred technique as long term outcome is poor due to shunt obstruction and/or spinal cord tethering.




How successful is surgery?


Cranial/cervical decompression surgery is successful in reducing pain and improving neurological deficits in approximately 80% of cases and approximately 45% of cases may still have a satisfactory quality of life 2 years postoperatively (Rusbridge 2007). However surgery may not adequately address the factors leading to syringomyelia and the syrinx appears persistent in many cases (Rusbridge 2007). Much of the clinical improvement is probably attributable to improvement in CSF flow through the foramen magnum.


What is the recurrence rate after surgery?


In some cases scaring and fibrous tissue adhesions over the foramen magnum seem to result in re-obstruction and 25% to as many as 50% of cases can eventually deteriorate (Dewey et al 2005, Rusbridge 2007). This can be as early as 2 months postoperatively.


Dr. Dewey stated again about the 50% of "cases" and I hate to think of Ella as a case of relapse.  He stated that his procedure had a 7% relapse rate.  This is a big difference. 

I am constantly worrying about Ella getting worse.  I have days when she is better than ever but then there are the bad days and I see the signs that she had before she had surgery.  I am reliving everything over again.  I know it has only been 6 months and we still have a long way to go.  Every head shake, every stumble up the stairs, every time she hides under the bed, every time she flinches when I try to touch her head my stomach drops. I have these statistics in my mind. I will not be able to handle this again and she is just too young with too much to offer.  I know she has so many good days that to harp on the bad ones is not fair.

When I explained to her neurologist some of the things she had been doing, he seemed concerned and put her on some more medication. He mentioned doing another MRI and that was extremely scary for me. I know the more knowledge is better but if the MRI results are not good, then I am faced with the same thing as before. I worry but I have reason to worry because she has a 50% chance. One person told me to face the facts and that she is getting worse. To just adjust her medications and that is the answer. There are several articles you can read about statistics and dogs that are euthanized and success rates but it just makes me too sad. I am posting this to share my worries but I also know there are people that need hope. I also long for hope too and there is hope for many of them.  Ella is her own case. She is a special case and a special angel.