Others needing prayers

I have met people through this blog and would like to mention some people that just need some prayers. 

Corey- ella's friend had surgery thursday that went well & no complications but i pray for a quick and good recovery.

Isabelle- her mom recently found out she has sm and has been needing support and prayers to help her with this. It is so hard and so many questions and she is having a hard time. Isabelle is having an mri september 4th and we hope it is not severe and the best .

Panda- has been on my prayer list. Panda's mom is on the yahoo support group and is always helping others in those tough days when people just find out, have questions, etc. She actually helped me when i was one of these people reaching for support. Panda had surgery 2 years ago and we hope that medication changes and other things will help panda since she seems to have some trouble. Part of it can be due to weather changes, but as i know it is hard not to be scared that even with surgery scar tissue or they will start to need another operation or hope medication will help which it does for many.

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

Ella the Angel that Saved me and the other Angels that are Saving her

I keep wanting to start at the beginning and tell how Ella came into my life because I believe she is an angel.  She saved me and so I knew I needed to do everything to help and save her.  I will always be thankful for her but recently some other angels have come to help her and I have been overcome by the kindness I have seen by the people who have been also touched by her.  I started this blog to share Ella's story because I read about another dog Ollie who I have talked about a lot in my blog.  I knew about Syringomyelia and the symptoms and I felt that if another owner could notice some of the symptoms of SM or if her story helps another, then what she has gone through would be worth something.

Since the time I found out about Ella until now, I have met a lot of others going through the same thing.  I have talked to breeders about their struggles and also some very special people who are trying to spread awareness and help with research for Syringomyelia.  These people are always on my mind and in my prayers.  There is a lot to this condition which I have some posts about and I have always said that each dog is different.

There have been people that have supported me and when I started to get concerned because I started to see symptoms come back and it was like I was going through everything all over again.  I was scared because I have done everything possible to help her the first time.  So what do I do? When some dear angels www.dawgbusiness.blogspot.com organized a fundraiser for Ella and the response was more than I could imagine.  This spread to others http://dogandogs.com/ , http://thisonewildlife.com/, http://www.pet-health-care-gazette.com/ and even others that I am going to list who posted her story.  Then I had emails and donations, prayers and concerns for Ella.  It was truly touching and I could not do this without everyone.

This is why I want to tell everyone that I will do everything in my power to return the help.  Ella going through this changed me and helped me realize what is truly important.  I will never forget what people have done for her and will do everything in my power to thank them and also pass on this generosity to others.  That is what I always wanted and this blog started because of that reason but it turned out that others helped her.  Please continue to follow up on Ella's story but I also want to say that Ella is not alone.  I have so much to say so I will separate posts.
 

A day to be thankfull!

I am so thankful to @dawgblogger for starting a campaign today to help Ella. The people who have just learned about this condition and have showed support is so helpful.  The reason I started this blog was to bring awareness and support to others going through this.  I still plan on doing that no matter what Ella's future holds.  Recently I have been really scared because I am scared that she might be relapsing.  Even though I still feel for everyone else, I do feel for her.  Ella is needing another MRI and even though I don't know the results yet, someone said I can't be in denial. 

There are many ways you can help Ella.  If you could at least learn more about this condition and tell another person, then you are also doing something.  I have said before that knowing the symptoms early I thought would have been less damage. Unfortunately it was still severe.  You can donate money to Ella any little bit would help. If you email me and leave a comment, Ella will send you a special wish.  Learn more about it because there are still many people that don't know.  So pass it on and not to just Cavaliers. I have said that even though it is more common in Cavaliers, other breeds also can get it.  I put a post about Winston the Pug. 

Here is the blog post on http://dawgbusiness.blogspot.com/ that has been tweeted among Ella's lovers and supporters.  Please leave a comment and know that I will always be concerned for all dogs. I know this is about Ella, but I will continue to support all dogs and the people who love them.

If you love Cavaliers, then know who the people are that are really helping our breed

People go to the Internet to get information about breeds, buying a puppy, health issues etc. but the valuable information from people that are the most knowledgeable are often not recognized.  If you do a search for Cavalier King Charles Spaniels, several websites appear.  Which ones are created by people who know the most about this breed? Well I know I am no expert, but I have spent a lot of time finding out about what people are doing for Cavaliers and the real issues they are facing.  People make money from online sites, advertisements, product information, etc. but what about the ones that are spending their time doing research. They have websites they spend countless hours giving information from studies, experts, and not to make money but for the love of the breed.

I have talked to responsible breeders who have told me their side of the story that are rarely recognized for their efforts.  They are grouped with all other breeders.  I can do a post about that but to keep politics out, I would like for you to think about who is giving the information.  Anyone can put information on the Internet and I feel sad for how many people do not know what the efforts are being done and the scary truth about the future of our breed.

I am going to write the press to tell the things I learned. It is not just about Syringomyelia, it is about knowing that we should depend on these selfless people that love our dogs.  I look at all of the things that I bought Ella to make her look good, feel good, be stylish and that was so much fun. Most people don't want to learn about the important issues.

The police have k-9 units that have been breed from selective lines that have qualities that are useful. It is a science I do not understand but one that is needed.  Are those breeders the same as others?

How does that relate to our Cavaliers. Well, people are trying to find dogs and lines to breed so that the chances of passing on Syringomyelia is less.  Each generation it seems is becoming worse. A lot of dogs do not show symptoms but can pass this on.  There are research studies, websites, and health information that talks about these things.

This is quoted from Ruperts 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.

www.cavalierhealth.org
http://www.rupertsfund.com/Ruperts_Fund.html
http://www.veterinary-neurologist.co.uk/
www.sm.cavaliertalk.com
www.cavaliermatters.org

If anything please ask spread the word and help those that deserve praise for what they have contributed

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.

Corey

I wanted to share this picture of Ella and Corey.  Corey is going to see Dr. Shores and will be getting surgery for Syringomyelia. My prayers are with our friend.

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)

Ella Needing a Second MRI

I have been avoiding this since Ella's neurologist told me Ella would need a follow-up MRI in August. My previous post told the statistics about her chances of a relapse and even though I have seen the symptoms reappear, I have been scared.  One reason is because I know I will not be able to do anything about it.  If scar tissue has developed they recommend surgery to remove it.  Surgery that I will not be able to afford.  Knowing that she is on medication and I still see some symptoms of pain and eventually she will get to a point that I don't want to imagine and there is nothing I can do, will kill me.  I will need all the support and prayers through the next few weeks. 

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.

Things and people I have learned from through this experience

Each January I have new resolutions and hopes for this year to be more fulfilled and even better than the last.  I thought this was going to be a great year. I had recently changed jobs and I was so excited about my new opportunity.  Everything changed that first week in January.  I remember sitting that first week in class and reading "For the Love of Ollie" during a break because I knew something was not right with Ella.  My excitement over my new possibilities was now filled with fear of what was going on with Ella.  Soon after she was diagnosed with a severe case of Syringomyelia.  The outlook was not good for her because she was not reacting well to medication and also due to her specific case.  It seemed like her only hope to prolong her life was to have foramen magnum decompression surgery.

I have posted a bunch about how difficult the decision of whether to have surgery or to try to manage Syringomyelia (SM) with medication is.  This post is about what I have learned from people and what I personally went through.  Surgery is very expensive which money is not something I have.  Ella is everything to me and I have told the story about how I got her when I was extremely depressed and she gave me a reason to live. I could not look at her and know there is something I could do to maybe make her life longer and stop progression.  There are some dogs that manage fine with medication alone but that did not seem to be a choice for Ella.  I did not know what I would do without her and since I was not approved for credit for the surgery, I had a family member sign for me.  I had several people tell me that they did not understand why I would spend so much money for this.  One person even said for the cost of the surgery, you could even get another Cavalier.  Are you kidding me.  They did not agree with me changing my lifestyle so that I could take care of Ella. Without Ella, then I don't know what kind of life I would have.

My life has changed.  I lost friends because I spent my nights with Ella and her recovery.  I did not have the luxury to go out with my friends to dinner or do the things I once enjoyed but that was okay because I had this beautiful blessing with me.  I have friends that understand but I have learned that the things that once mattered are not important.  Also spending my nights and times with Ella, I have developed relationships with people from all over the world.  I know how hard it is to go through this and every time someone e-mails me telling me they learned their dog has SM, my heart goes out to them.  I have developed new friendships and once someone has gone through this, there is a bond.  It is so difficult and it is something that you don't wish on anyone. 

Things did not stop with Ella's surgery.  I started to join groups and heard stories from other owners and breeders.  I developed a passion for the health of dogs and for spreading awareness of Syringomyelia and also the importance of dog's health.  I especially feel for the Cavalier breeders that are trying to prevent passing this on to future generations.  The responsible breeders are paying to have their dogs scanned to follow SM breeding protocol because they do not want to pass this on to future generations.

Rupert's Fund was established for SM. The following was from the website:

 Rupert's Fund is a rolling fund to MRI scan older cavaliers, age 6+, for critical research into syringomyelia   (SM), a neurological disease that is alarmingly prevalent in the breed. International studies have shown at least 35% of cavaliers under 5 worldwide have this often painful condition. Researchers now estimate 70%-plus of all cavaliers will eventually develop SM, and evidence indicates it is taking more severe forms over time.

Why scan? Finding the genetic cause of this terrible disease is critical to the survival of the breed and will give breeders tools to breed away from the problem. Scans are a crucial part of this research, because they are the only way to accurately diagnose SM.

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.

I have learned to sorrow and loss from other owners.  Just watch this video clip of Lucy and you will see how painful this can be for someone who lost their Cavalier to Syringomyelia.  YouTube clip of Lucy in the Sky.

Even though this has been an extremely tough year, I have learned what is important in life. I have met some very generous people who have contributed to Ella and have let her touch their lives as she has touched mine. I know that I can not do the things I once did but my values are now on things more important. Keeping Ella healthy and happy as long as possible, being there for other people going through the same things, being active in Cavalier groups and involved in their meetings, understanding how important it is for people to know about responsible breeding because I cry already too much each time I hear from a Cavalier suffering. 

I know there are many people and dogs that need help and people may not understand why I went and did everything I did for Ella.  I have always been involved in charity and volunteer work and I never thought I would be needing help myself.  I have started fundraisers for the Humane Society of Charlotte and raised over $2000 last year but it is different when it is your dog.  I thought I could do the same and I will.  I had a silent auction for them last year so I gave everything to that.  Ella used to be a therapy dog but she can't anymore. I met some people on Twitter that have shared her story and even people that read this blog and ask how she is doing.  Those things make each day easier.  I enjoy each day I have with her and cherish the moment and don't regret the fact that I can't get my hair done or buy the cute new shirt I want.  I know that those things don't matter a year from now.  I look at the tubs of outfits and collars I have bought Ella through the years.  Those things were not to make her happy. She does not need a Louis Vuitton coller but what she does need is for me to be by her side and massage her and kiss her when she is feeling down.

You can only take so much

I started twitter, which i thought was stupid, but it really introduced me to very special people. I feel like there is nothing worse than sm but that is because that was all i could handle. I believe God only gives you as much as you can take.  I am not the strongest person and can only take so much so when ella was diagnosed with SM, i was broken. I went into a hole and i did not know if i could handle losing her. I still dont know if i can.

I have met people who have gone through so much more with their little ones. There was a cavalier that was attacked by another dog and it is a miracle that she is still alive. Her owner said she left her after hours at the hospital covered in her blood. There is another person taking care of a parapaligic cavalier (audrey hepburn) and i just think how little ella's problems are.

However, it is all i can handle. I recovered with her and try to remain strong for her. I am so thankful she is doing great but my heart still is with all of the others facing the loss or dealing with the health of a loved one



anniemac proud owner of ella

Ella's New Friend

Sometimes i feel that i am continuing to write about the same things and i forget the point. Its not fun for me to relive the days of worry about ella. Those countless nights i spent on the internet searching for some answers. Then i realize that is exactly why i do this. Some people have reached out to me and shared their stories.

Recently i got an email from someone just starting the process when she found out her dog had severe sm. She seemed scared and was looking for guidence or at least someone to talk to. That was the way i felt. Even though i could not tell her whether or not to have surgery, i hope that maybe it helped just to talk about it. I feel for her and her journey ahead. I can not predict the future but she has a great neurologist so she is in good hands.

I also have received help from others. Ella only had surgery 6 months ago and sometimes i get scared that it was not successful. I talked to someone who had a cavalier that had surgery 2 1/2 years ago and she said she felt the same way. I did not feel alone and i knew that 2 1/2 years is a lot longer than i thought. The problem with the internet is that it is hard to find the stories of what happens after surgery. You go through the recovery but then what.  Let me say that i  have talked to people that have cavaliers that had surgery over 5 years ago. There are success stories but i cant help to see things in ella that make me worry that it is all beginning again



anniemac proud owner of ella