Saturday, August 21, 2010

Fight For Ella Continues

Recently we got acquainted with Ella and her struggle with syringomyelia. After her surgery Ella was doing great.

Sadly, her fight is not over as her symptoms seem to be making a comeback and there is a chance that she might need a second surgery. She does need a new MRI to properly assess the situation.
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.
The most common surgery to relieve the effects of syringomyelia is cranial/cervical decompression (also described as foramen magnum or suboccipital decompression). The flow of the cerebrospinal fluid (CSF) is freed by removing both part of the skull and part of the first vertebrae. That is the surgery Ella had done.

This surgery has a good success rate in reducing pain and neurological symptoms. However 25% to 50% cases can develop scar tissue that will obstruct the CSF flow once again and lead to relapse. Ella has been put on additional medication and considering the signs she is showing there is a good chance that she is one of the dogs who relapsed.



Ella's update

There is no cure for Syringomyelia. Those words keep playing in my head. There is also no guarantee that Ella will not 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. (visit Fight for Ella for detailed surgery statistics).

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.
I have been avoiding this since Ella's neurologist told me Ella would need a follow-up MRI in August.

The  chances of a relapse are relatively high 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.

Ella needs our help!

We have lost a dog in the past because we couldn't afford expensive medical treatment. It is the worst feeling ever. With Jasmine we had been lucky to have had enough credit to give her what she needed.

Not everybody is in a situation where they can afford such an expense. They don't love their dogs any less.
Annie has already used all her resources for the first surgery and treatment and now has nowhere to turn except to us. She needs to raise $2000 in order to get Ella the MRI and treatment that she needs. She needs your donation to raise these funds. Please consider helping Ella. Even a small donation will help. Click on the "ChipIn!" button below to make a donation safely and securely or visit Annie's website to contribute.

Update on Ella
August 25th

Annie has now raised the funds needed for Ella's MRI! It is scheduled for September 1st. We will update you on the results. Thanks to all of you who helped!

Update on Ella
September 8th

Ella's MRI results are not good and without another surgery Ella might have only months. Full update here.

Related articles:
The Dark Cloud Of Syringomyelia: Fight For Ella
Fight For Ella Continues
Ella's MRI Results And Update

10 comments

  1. Woof! Woof! Sending Ella my Golden Healing Thoughts. Happy Blog HOP Weekend. Lots of Golden Woofs, Sugar

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  2. I just got a tweet from @RichellUSA that says:

    "We are willing to donate product for a fundraiser for Ella - pls contact us!"

    This is their website: http://www.richellusa.com/index.php

    Can you put the right people in touch? Thanks!!

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  3. Hi Kim. Thank you so much for helping! I am contacting @RichellUSA

    Thank you! :-)
    Jana

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  4. I was directed over to this blog from another I commented on yesterday. I feel the same things I said there need to be said again here. It is all well and good to be suppoting a cause but this one concerns me a great deal.

    I want it to be mentioned that Ella is getting her MRI for free.
    http://www.cavaliertalk.com/forums/showthread.php?35260-Ella-needing-another-MRI.-Please-Help

    The decision to do a very controversial and fairly unsuccessful surgery is choice rather than necessity. Most dogs with SM in varying degrees can be managed very successfully through very cost effective medication plans. Surgery is not the advocated treatment for most Neurologists including Clare Rusbridge. It is in its infancy and so far proven to have very low success rates and high incidents of failure.

    If you are truly interested in helping Cavaliers I’d suggest donating to ongoing research projects including “Finding the Gene – through the Genome Project in Montreal http://www.veterinary-neurologist.co.uk/research.htm or the Foetal Tissue Research Project, http://www.facebook.com/group.php?v=wall&ref=ts&gid=106376279394443#!/group.php?gid=106376279394443&v=info&ref=tsboth of which are in desperate need of funding.

    That way the many breeds who are being discovered to have syringomyelia including the ckcs, brussels griffon, maltese, yorkie, shih zu, pug, Pomeranian, papillion, bulldogs, and many others with increasing prominence can benefit from discovering more about this horrible condition. http://www.friends-of-lola.com/8.html

    I wish Ella the best and I hope that her donated MRI sheds light on what she is going through and her medications can be re-evaluated so that she can be more comfortable in her day to day life.

    Sincerely,
    a Concerned CKCS Owner and Lover

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  5. Dear Anonymous

    Yes, Annie was told then that Ella would get a free MRI. However, that is not how things turned out.

    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

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  6. I first wanted to thank Jana for what all she has done for Ella but not only brought awareness of Syringomyelia to others. I also thought I needed to explain about Ella and mention that I agree with the post about other things needing to be done. It is hard to ask for help for Ella when I have been involved with others going through this and have wanted to help bring awareness and have talked to other breeders and know the importance of research and more importantly how much needs to be done.

    I promise everyone that I will be always involved in this effort and knowing how hard this is as an owner to even get an MRI, it brings up two key issues. I am glad that Ruperts Fund is know on this blog. Seeing Ella and knowing the pain and hard decisions people go through, I would not wish this on anyone. There are some breeders that are scanning their dogs before breeding them in an effort to try to decrease the likelyhood of passing this on to others. The only way to do this is with an MRI. That is costly as I know. So I feel for those breeders who are making efforts for this breed along with others.

    Also Ruperts Fund. This has been an important part of trying to scan (have MRI's) for older Cavaliers and Friends of Lola (which is includes other breeds) to find clear lines. There is research being done and these people should be noted.

    I have mentioned these things on Ella's blog and have always had links. I know what they are also doing and I think they are very important. Being there for others is important to me. Jana has continued to help others (including Ella). I am thankful to those who have helped her to get the MRI which will better determine what her options are.

    I am also thankful this brought attention to an important issue dear to my heart. Jana said that it did bring attention and actually Ella's story starts with a book about Ollie. A Cavalier that brought attention to me about Syringomyelia. Through Ollie, I recognized symptoms that I know helped her before too much damage is done. If one other person learns about this and it helps them, then that is the greatest gift. Prays to all that have loved ones and have been angels to her. If you would like to learn more or even contact me, please feel free to visit her blog. I would love to share more about my special girl.

    Thank you so much Jana

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  7. Thank you for your story and updates about Ella. How heartbreaking this must be for you and my thoughts and prayers go out to you and especially to Ella.

    form Donna@petsgalorestore.com

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    Replies
    1. Thank you, Donna. Sadly, Ella has passed on, and as fate would have it to a totally unrelated problem. She ingested a string which wrapped around her intestines and necrotized them. When finally diagnosed, and 75% of bowel removed, Ella did not make it through that ordeal.

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