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