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Thread: Just had SM diagnosis - help!

  1. #11
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    Hi Ruth, just to let you know I'm thinking of you and Tilly and sending hugs for you both, hope she's feeling a lot better when she gets on the stronger meds
    Elaine and Cody

  2. #12
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    Default posted by ppotterfield

    I accidentally deleted this post from Phyllis (ppotterfield) from the moderation queue (another post which shouldn't have gone there; don't know why!) but I was able to retrieve it:


    Ruth:

    So sorry to hear your news. Your neurologist is in the best position to give you advise but that said many do not have that much experience with Syringomyelia and you may want to print off some materials from these sites (which Karlin notes in a permanent thread on this Board):

    1) Numerous documents including general information and SM symptoms sheets are in the Health faqs:

    http://www.cavaliertalk.com/phpBB2/viewforum.php?f=11

    2) Clare Rusbridge's Syringomyelia Newsletters are archived here:

    http://www.cavaliertalk.com/phpBB2/viewforum.php?f=30

    3) The SM Infosite, a sister site to this one, which is dedicated solely to SM information, is: http://sm.cavaliertalk.com

    Also, I do not know where you live but if you are in the United States you may want to make your neurologist aware of that there are clinical trials beginning at University of Minnesota and University of Pennsylvania that he or she may want to consider for you. The information on the University of Pennsylvania study can be found at these two links:


    http://www.vet.upenn.edu/departments...ngomyelia.html

    http://www.vet.upenn.edu/departments...Club_flyer.pdf

    I do not have a link for the University of Minnesota study but here is what I have seen posted about it:

    "UPCOMING STUDY NEEDING CAVALIERS!
    Cavalier King Charles Spaniels
    Syringomyelia Pain Control Study
    Clinical Investigation Center
    University of Minnesota College of Veterinary Medicine

    We are looking for Cavalier King Charles Spaniels with the following signs:
    * scratching in the head/neck area
    * painful
    * sensitivity to touch

    If your pet qualifies, we offer free of charge:
    * MRI to confirm syringomyelia
    * Neurology consult
    * blood work

    For more information, please contact: Marianne Robeck, CVT 612-624-1352

    ** Please pass this on to others who could participate!

    vcic@umn.edu"

    There are others on this Board in various parts of the country who may be able to help you and your neurologist find someone reasonably near you with experience in treating this dreadful disease to help you.

    Please keep us posted.
    Karlin
    Cavaliers: Jaspar Leo Lily Tansy Libby (foster) Mindy (foster)
    In memory: Lucy
    Cavalier SM Infosite:www.smcavaliers.com

  3. #13
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    Red face Tilly's SM

    Thanks again everyone for such good advice - I have downloaded the factsheets. Great news - I am seeing the neurologist today at 1 pm! Our MRI was done as Tilly was to be a candidate for clinical trials at the Royal Vetinary College (UK) - but its now looking less likely as she is so unwell at the moment and they really want dogs to be as fit as possible to enrol on the trial - anyway they will look at her today and discuss treatment options with me. Hoping to get results from her dural tap and bloods too.

    Just to 'off-load'. I found out about the trials on this site - not through my own vet. Even though I knew my girl was in extreme pain my vet gave me NO indication that this could be SM - I did all my own research - came across SM on this site - and made all the arrangements myself! I remember one visit to my vet - Tilly had been shaking and shuddering in pain, the screaming sessions were lasting for minutes on end and I was frantic - when I got to my vets - he checked her over - said maybe she had a sore paw - when I questioned the shuddering he said - "what do you expect she's a Cavalier - should have got a proper dog" - I know he was joking - but the more I think of the suffering Tilly has been through the madder it makes me. I don't think lots of vets have much clue about this condition and this scares me. I will be taking the factsheets with me on my next appointment.
    So THANK GOODNESS for this site - and the fact that google directed me to you.
    If anyone is interested in the trials (the service I have received is brilliant!) you should contact the RVC on 01707 666 605 - tests done are MRI, CSF, Biochemistry and Haematology - you also have free consultations with the neurologist. Even though your insurance would cover these tests .. first we need vets to refer us ..

    Thank you again all for the guidance and kind words of support - Im feeling empowered to ASK for the treatment she needs (in between the tearful moments)!
    Keep posting please!

    Ruth

  4. #14
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    Quote Originally Posted by Ruth M View Post
    "what do you expect she's a Cavalier - should have got a proper dog" - I know he was joking - but the more I think of the suffering Tilly has been through the madder it makes me.

    Grrr!

    Good luck today!! Let us know how everything goes!
    Ashley, with Holly and Murphy

  5. #15
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    Fingers crossed for Tilly

  6. #16
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    That is so infuriating about your vet's reaction. I'm so glad you found this site and are getting some great advice and guidance. Good luck with your appt.
    Cathy
    Loving mom to Jake, Shelby and Micah

  7. #17
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    I am so glad you found CavalierTalk and the SM site! All of us, especially those of us who have cavaliers with suspected or confirmed SM, need to help educate our vets, so others will not suffer needlessly in the future.

    I hope that many of us will get our symptomatic cavaliers into the current and upcoming studies to help improve the treatment for SM pain.
    Cathy Moon
    India(tri-F) Geordie(blen-M)Chocolate(b&t-F)Charlie(at the bridge)

  8. #18
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    Hello Ruth,

    I have four cavaliers in the house at the moment, two middle age boys and one elderly lodger ( my Mother's dog ) all with mild SM, which is controlled with rimadyl or metacam, and one ten month tricolour bitch puppy who was MRI scanned
    clear last week (She will be scanned again at 2.5 years before being bred from)

    I am so sorry to hear about your little girl. I'm afraid your's is not an uncommon story, there are still many vets that do not recognise the symptoms of SM.
    I have frequent telephone calls from owners that have spent months, sometime years, trying to find out what is wrong with their pet. Skin scrapings, medicated shampoos, special diets all prove useless, and in the meantime the dog's condition deteriorates.

    Yesterday I was told about a young cavalier that had her anal glands removed because of persistent scooting (She was also face rubbing and yelping occasionally ) There has been no improvement.
    Hopefully she is now going to be referred on to the RVC

    The RVC clinical trials have been enormously helpful to many people, especially those that did not have insurance cover. I do hope your recommendation will encourage more owners to volunteer their pets.

    I don't know whether you have informed Tilly's breeder that she has SM? This is one thing that everyone with an affected cavalier can do to help raise awareness of the condition.
    There are still some breeders who will not believe that syringomyelia is widespread in the breed or that it is so painful & distressing to dog & owner.
    People really need to be told when they have produced an affected cavalier.

    I do hope that Tilly can be made more comfortable soon.

    Best wishes,

    Margaret C

  9. #19
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    Phew - thanks again to all. Had a productive appt with neurologist - and now have gabapentin. Tilly has colitis (stress induced?) - so we have to wait until this has cleared before starting her on the stronger meds. Thank you one and all for the advice - would have been lost without it. I am also going to ask my vet to refer me to Clare Rusbridge for a consultation.
    I can't believe how common this condition appears to be - I really wanted to have another cavi - but am petrified of going through this again, does anyone know of a way of ensuring a new pup is SM free - or do you know of any breeders who's dogs are genetically tested?? - long shot I know.

    Hope all of your four legged friends are doing well. Thanks again!
    Ruth

  10. #20
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    Ruth: I am so glad your appointment was moved up and that you have what many of us consider the 'miracle' medication for pain, gabapentin. It doesn't work for all, and it may need to have the dosage upped over time, but I would bet Tilly will be feeling some relief from having this.

    As others note your experience with your vet probably wasn't too unusual (the lack of awareness) though I'd be furious about the dismissive attitude towards the breed. I regularly hear of vets calling cavaliers 'wimps' with comments like 'oh, they always scream when they get vaccines, they have a low pain threshold'.

    It is amazing to me that vets have not instead wondered just what might predispose a breed to expressing signs of serious pain in the same general area, at what should be modest treatments (vaccinations, having paws and limbs handled, etc)? Of course now we know the most sensitive area for many cavaliers is the neck, shoulders, ears and paws because of CM/SM (hence I recommend asking vets to always vaccinated in the thigh, never the neck, ever again, regardless of whether a dog is outwardly symptomatic or not).

    Fortunately the Irish Vet Journal did an article on SM in the breed a year ago and that means many irish vets now know of the condition at least vaguely -- this has really helped raise awareness. But for most of us, we with affected dogs become the main source of information for vets on this condition. They are the equivalent of GPs so should not really be expected to be able to diagnose the condition but they do need to know enough about it to refer suspect cases on to a neurologist when they have exhausted treatment options. My vets, who are the largest set of practices in Dublin, tell me that since I started going to them with my affected dog and went through MRIs etc with them, they have been able to spot many cavaliers with the strong possibility of the condition, later confirmed at the main vet school, so for anyone with a cavalier, educating your vets may help many cavalier or other small breeds, even if your own dog is unaffected. Good luck with your visit to Clare and let us know how it goes.

    There are breeders working with the recommended breeding protocol for SM so when the time comes to look for a puppy, check in here and PM me and I can refer you to the contact for finding breeders that scan. This doesn't eliminate the possibility of SM but does, on research findings so far, greatly reduce the likelihood of a symptomatic dog.

    Margaret: I am so happy to hear of your scan results!
    Karlin
    Cavaliers: Jaspar Leo Lily Tansy Libby (foster) Mindy (foster)
    In memory: Lucy
    Cavalier SM Infosite:www.smcavaliers.com

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