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Thread: Rory has Syringomyelia

  1. #1
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    Default Rory has Syringomyelia

    I've been holding off posting this for a while but Jen and Karlin convinced me that people need to be aware of how widespread this disease is. Current statistics indicate that 83% of Cavaliers have SM in some degree - whether or not they show symptoms. In fact, 70% of 70 clinically unaffected dogs had syringomyelia, 17% had occipiptal dysplasia and only 13% MRId clear.

    We took Rory to NC State for the MRI study they're doing out there and he did in fact come back as affected by Syringomyelia. I had feared this for a while as he seemed to be scratching an awful lot, especially over the summer. (But besides itching at his ears and head and a few unexplained yelps, he has no other symptoms that I can tell.) My fears were further confirmed when I found out that his father and at least one littermate are affected with symptoms (no MRI, that I am aware of).

    He has the occipital dysplasia, the herniated cerebellum and one large syrinx in his spinal cord running almost the entire length of his cervical region (neck). He also has primary secretory otitis media in his right ear.

    We have seen a few neurologists and have decided to start him on Prilosec to try to decrease the CSF production and hopefully decrease the syrinx or just relieve some of the symptoms. Considering how big the syrinx is and how severely affected he seems, his symptoms are very mild. But this only supports the current research which indicates there doesn't seem to be any correlation between size of the syrinx and the symptoms. Some dogs w/o syrinxes at all are showing worse symptoms than Rory -- scratching constantly, crying, headaches, withdrawing from their owners and hiding, weakness in the limbs, etc.

    Rory is only a year and a half, which doesn't bode well for his prognosis, but honestly - we don't know what will happen. He could deteriorate rapidly. He could never get worse. We'll just have to wait and see. But I'm very glad that we got the MRI done and can begin treating to hopefully prevent or decrease further deterioration and help him live as comfortable a life as possible for as long as possible.

    I'm not sure if we'll continue to show. We were both enjoying it tremendously and I hate to give it up just because I fear what people will think. But honestly -- if the statistics are correct, 8/10 of the dogs in the ring have it! Just because people don't MRI and therefore don't have a definitive diagnosis, doesn't mean their dogs aren't affected.

    The Cavalier community MUST realize how serious and widespread this problem is. I honestly have very little hope for this wonderful breed and I fear their future is bleak at best. Given the overwhelming preponderance of diseases that afflict these precious little dogs, I do not see myself getting another Cavalier in the future, unfortunately. Even as a future vet with all the best resources available to me. And that breaks my heart. But not as much as it is breaking my heart to know my dog has this disease and to see him scratching and yelping and wondering just how bad it will get and what we will have to deal with in the future. Wondering how we will make choices about treatment, surgery, quality of life...

    Please take the time to educate yourself about SM. Karlin has set up a wonderful site ( http://sm.cavaliertalk.com/ ) with lots of info about SM, including Clare Rusbridge's current newsletter which includes their current statistics and suggested breeding protocols. Know what to look for, because the signs are vague. Even at UC Davis Vet School I had to fight to get him seen by a neurologist. They made me take him to the dermatologist first because my complaint was "scratching at the ears". This is so new and so serious, but lots of vets are just not aware because of how quickly it seems to have exploded in prevalence.

    It is up to us - the responsible, concerned Cavalier owners -- to push this issue and spread the word - to other Cav owners, to people interested in getting a Cav, to vets, and breeders. We can't hide this anymore or pretend it doesn't exist. The only hope for saving this breed is if breeders are doing MRIs and supporting research, and this won't happen unless the puppy buyers demand it.
    Dogs are not our whole life, but they make our lives whole.
    --Roger Caras

  2. #2
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    We're all here to offer support for what is a devastating diagnosis for any of us. It is really good that Rory has so few symptoms and doesn't seem to be feeling much if any pain from this at this point -- I'll be hoping things remain that way. I'll be interested to hear what you think of the Prilosec and its effectiveness -- the more we know about how different treatements work, the better for all of us with affected cavaliers. A big hug for Rory.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  3. #3
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    Thanks for this post Kendall, I'm sure your insight and experience will help others as their support will help you, too. You're on top of the situation and in a good position to do everything for Rory. We'll have to compare notes as to how Prilosec is working for him and Lasix for Abbey. Contact me whenever, you know you have all of our support!
    Give Rory a squeeze from us!!!
    Jen, Abbey (Tri Cavalier) & Gus (White Min. Schnauzer)

  4. #4
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    Kendall I'm so sorry for your news and my heart goes out to Rory.

    My Cav is only 8 months and I'd like to have the MRI done to ensure that he's ok..... he does sometimes rub his ears along the ground as if itching (he's no mites/ fleas etc) but he hasn't shown any other signs at all.....

    I live in Dublin, Ireland - Karlin, can you suggest a good place to go?

  5. #5
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    I've PMd you as well, but head rubbing is a really common activity that is normal for dogs so I wouldn't worry too much unless it gets excessive and seems to be an activity that is distressful for your dog. My aunt's pugs did this all the time and then lots of writhing around on their backs -- and my non-SM dog Jaspar does this all the time, as does Leo -- but even in Leo'd case it is clearly something pelasureable, not a response to pain. You can however get a low cost MRI done in the UK in Chester which is an easy drive from Holyhead (I actually took the train and ferry).

    It's not a bad idea I think to do an MRI, but you may want to wait till your dog is a bit older -- maybe 2 or so? Unless he has symptoms waiting will give you a better idea if there's any sign of syrinxes as these typically develop over time. If he has syrinxes and no symptoms at 2 or 3 then you could try giving frusemide for example just to (hopefully) prevent them from developing further. Mr Skerritt will advise.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  6. #6
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    Hi guys,

    I was wondering how Rory is doing since he's been diagnosed with SM?

    Have you noticed any more advertent symptoms or is he doing better / stable on the treatment???

    He's such a beautiful little thing that it really is horrible to think that this can affect so many cavs .....

    Karlin - thanks again for the info on MRIs in Ireland (Wales!!)
    Gizmo is in great form and pratically bounces about the place (unless totally tired out when he flops on the couch near his blanket and refuses to move!!)

  7. #7
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    I just joined tonight ... just purchased my first Cavalier baby 3 days ago, and now I am a worried sick mommy!!! I thought I had done my homework on this breed, I knew about the MVP but not this horrific SM. Now I feel like I am going to live each day in fear of my baby having this, and second guessing my decision to get her. I currently have a miniature poodle who had a blown disc in her spine and is now paralyzed from the waist down and completely incontinent. She is in diapers. We spent $3,000.00 on surgery that was unsuccessful for her. Every day I watch her legs deteriorate more and more and it breaks my heart.

    I was so excited about our newest baby and the joy of watching her play and be healthy and happy, now I'm really worried. It sounds like something has been very mismanaged in the breeding of Cavaliers if nearly 80% have this dreadful disease!

  8. #8
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    It isn't that anything has been mismanaged from way back; it is that a once hidden trait has slowly worsened and is now surfacing as symptomatic cases in a greater number of dogs (cavaliers had a particularly small number of foundational dogs -- the breed was reconstructed less than 100 years ago and is based on less than a dozen dogs, some of which seem to have had genes for both MVD and SM). Only in the past decade have MRIs made clear what was causing pain and problems in the worst symptomatic cases. Only within the past year or two have breeders really begun to get enough information and advice to start to make some initial breeding decisions.

    However it is unfortunate that this quite serious problem has a high prevalence in the breed, as does MVD. The issue for breeders will be to minimise occurence of symptomatic cases and early onset cases, much as good breeders do already with MVD.

    A dog is a living thing and therefore there are never any health 'for sures' though you can maximise your chances of a healthy dog by going to the best breeders possible. Still, things happen and all dogs will carry and be affected by both good and bad genes. The incidence of symptomatic SM is very low so while every cavalier owner should be aware of symtpoms (as with MVD and congestive heart failure) there's a far higher chance that a cavalier will die from MVD complications than ever show symptoms of SM. So don't worry about things that haven't occured and may never occur.

    I have website where you can learn much more about this condition:

    www.sm.cavaliertalk.com
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  9. #9
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    [quote="Dottie"]I just joined tonight ... just purchased my first Cavalier baby 3 days ago, and now I am a worried sick mommy!!! quote]

    Don't worry about what hasn't yet happened, just enjoy your new baby.

    Personally, after the loss of my three girls with severe SM if I were EVER to buy again I would search for a pup from only scanned A parents on both sides along with a history of clears within the family and previous siblings if already born.

    Even then you cannot be 100% sure that your puppy will be unaffected, but you have done what you can to try and get that.

    I would say if in any doubt to constant un diagnosed skin conditions, limps, scootings, scratching, yelping...please get a scan and know what you have.

    You NEED to know so that your dog can get some treatment, and always inform your breeder of the results, good or bad.

    I do push information and I always inform vets in my area about SM, I havn't stopped doing this for the past few years....a little effort goes a long way. I drop leaflets into Groomers, dog clubs, vets, pet stores etc.

    The leaflets also contain information on Neuroligists familiar with SM with contact numbers etc, MRI scanners in the area and up to date info from various sources.

    I don't intend to ever scare but to gently educate.

    Alison, Wilts, U.K.

  10. #10
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    Thank you for your responses. I did look at your site and that is what really upset me the most. Watching that 2nd video of that poor baby screaming in a fitfull pain just brought me to tears! I couldn't bear to watch any animal suffer like that even once, much less a couple of times per day.

    Well, I will just love my Dottie as I do and pray that she will never be affected by SM. May God be with Rory and the others here who are struggling with this illness.


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