Syringomyelia Awareness: Mylee’s Story

Mylee’s Story

Guest Post by:
Mary Beth Squirrell (Embee Cavaliers) http://embeecav.blogspot.com

Mylee means the world to me. She has taught me so much, and is my constant companion and shadow. Mylee is a very loving little dog to those she knows, and is completely devoted to me. She does not have the typical outgoing, friendly to all Cavalier personality. In fact she is incredibly reserved to those she doesn’t know. She often shies away from a strangers touch, giving the impression she is not friendly or that she apprehensive. To strangers who know Cavaliers this always comes across as very strange. Is her temperament off? Was she not properly socialized? Why doesn’t she want to say hi to me? Cavaliers should love everyone!

The truth is; Mylee is afraid that a strangers touch will hurt. She is afraid that you will touch her in the wrong spots. She doesn’t trust that you know how to scratch her on her chest and back and leave her head and ears alone. She is afraid that you will hurt her.

Mylee suffers from Chiari Malformation. Yes Chiari Malformation without Syringomyelia present. She has been MRI’d twice a year a part from each other with no changes on her MRI. In fact it was the opposite. Her second MRI was slightly BETTER then the first. She has no hydrocephalus, and no central canal dilatation. She has a very minor amount of PSOM in one ear that has been ruled out as the cause of her severe pain.

Prior to arriving at CM as her only cause of discomfort, my partner and I spent a ton of money in diagnostics starting with my own personal Vet and moving on through different Specialists. Allergies, yeast, eyes, teeth, mites, fleas etc were all ruled out long before her referral to Neurology. Both of her MRI’s were full diagnostic scans, not limited studies. A CSF analysis was also performed. Dr. Rusbridge also was consulted with my girl and was a wonderful resource and support, taking time to look at her CD and her video of symptoms. Ultimately everyone ended up at the same spot. CM has to be her only source of discomfort and pain because *everything* else was ruled out.

She is now three years old and is only kept comfortable through the use of pregabalin and prednisone. Her symptoms started at 6 months of age with occasional crying out of pain. She quickly progressed to screaming severe pain episodes by a year of age and had her first MRI at one year old. Her second was performed at just over two years of age. Before I go on in her story the use of these two drugs does keep her very comfortable and happy the majority of the time. As much as I hate to use prednisone it is working for us when nothing else has.

The amount of pain and discomfort my girl suffers from her Chiari Malformation is incredibly heartbreaking and concerning. She is scratches bilaterally on her neck, ears, head, and face. She is a constant head rubber and will throw herself down on the carpet and roll all over. She vocalizes in pain through very high pitched screaming fits. She will lay on the floor with her head flat down to the ground. She often retreats away from touch, and is very withdrawn when she is not having a good day.

One of the first things I notice is that on days that will be potentially “bad” her head, neck, and ears will radiate with heat. If there is snow outside she likes nothing more than jumping head first in the cold snow drift when she is symptomatic.

The actual shape of her CM is not different or severe in any way. She is not herniated nor does the flow of CSF seem to be extremely obstructed. I’d put her about middle of the road in terms of her CM from all of the scans that others have chosen to share with me. Which is now quite a few due to my involvement here with the CKCSC of Canada low cost scanning program.

I used to think my dog was an anomaly. The normal ‘just my luck’ type of deal. How disturbingly funny was it that my girl with the beautiful clear scan who should be my wonderful introduction to breeding healthy, sound cavaliers was extremely symptomatic and painful, and my other girl who was and remains very non symptomatic was MRI’d as having SM. How does that happen?

As time goes on and more people share their stories, and more cavaliers are scanned here I now know that is no longer the case. My dog is not some random once in a lifetime occurrence. There are several of them with more and more popping up on public forums each day. The first responses always being posted that “we’re so sorry but how WONDERFUL it is that your dog doesn’t have SM.” Well no its not wonderful. It is probably the worst thing you can say. So much focus has been put on Cavaliers who are symptomatic with syringomyelia. Most people have no idea at all that Cavaliers like Mylee exist.

The best you can say is that you are sorry. Most will automatically ask questions regarding diagnostics and care assuming that there has to be error within it. I spent many months doing the same myself and finally came to terms with whatever will be will be, and that comfort plus quality of life was the main focus for my girl.

SM is a very debilitating serious condition. However for me physical presentation of symptoms and overall soundness will forever be of utmost importance to me. I’m one of the biggest advocates for scanning breeding dogs. Yet it will forever be hard for me to put full trust in a piece of paper saying a dog is clear. Given the choice I would pick having all my dogs be MRI’d with SM and be non symptomatic their entire lives or the majority of it, then have another one with a beautiful MRI’s yet be in so much pain and discomfort.

What do I hope to accomplish by sharing our story? Awareness more than anything. Maybe some thought that non symptomatic “D” dogs who remain that way for years and most their entire lives, deserve some thought and credit. After all isn’t it the same goal we aim for in regards to MVD? Late onset or extremely slow progression? Clear and symptom free is definitely the ideal. However people need to do some more research and be more understanding of the fact that a clear scan, or an A grade on a breeding certificate does not mean that a dog is symptom free.

In the future I hope to breed healthy and sound Cavaliers under the Canadian Kennel Club registered affix “Embee”. Although Mylee has passed all required health clearances and was to be my foundation breeding girl, she will never be bred. When people are looking for A grade Cavaliers, somehow I do not think that this is what they are looking for.

Do your research before purchasing a Cavalier puppy. There are many great responsible breeders out there, doing everything they can to breed healthy and sound dogs. Seek them out and support them by buying a puppy from them. It does not guarantee that something will not go wrong with your puppy, but it does ensure the best chance of having a healthy companion. Make sure you trust them and that you can go to them for advice and expertise. Spend some time with their dogs at their home. It certainly wouldn’t take anyone visiting my home long to figure out that I have on symptomatic Cavalier and two who aren’t. A piece of paper is just that.. paper. Then when you do end up taking that beautiful healthy puppy home, and they grow into a beautiful sound, and healthy Cavalier, keep your breeder up to date. That is information that they want to have for making future breeding decisions. Help breeders by keeping in contact with them. We all are keepers of this wonderful breed and all hold responsibility to do the best we can for it and the Cavaliers future. Make sure you are doing your part.

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Comments

  1. Your article just provided a miracle answer for me. I rescued a Cavalier 5 years ago when he was three years old. The fool breeder no longer wanted this gentle boy because he wasn’t making good puppies. Within 24 hours of us saving “Walter” (not his true name) we knew something wasn’t quite right. Within a week we had spent hundreds of dollars only to learn it was SM. I was so upset I contacted the breeder to let her know that she’d been using Walter to pass along the gene of SM. Her answer to me was “Put him down”. That wasn’t the issue stupid lady. We weren’t breeding him. In fact he’d already been neutered. We weren’t complaining about the issues we were faced with, we’d already fallen in love with him. However, Walter his progressed in this disease and it’s heart wrenching. It’s so bad now that I’ve known that it’s time to help him move on and be free of the pain. My husband can’t quite say the words to agree and make the last move. Your article above just hit every point so exactly that I know once my husband reads it, he’ll recognize every single action of Walter’s that exhibits extreme pain and by tomorrow evening Walter will be free, crossing the Rainbow Bridge and romping in meadows with his brothers and sisters before him who suffered through it. The tears streaming down my face are not only for knowing what’s coming in the next 24 hours but for having a fuller insight as to Walter’s actions which we always suspected but never read in writing. Thank you for having the courage to share.

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