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Thread: My Melvin and the lingering fear SM

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  1. #1
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    Default My Melvin and the lingering fear SM

    Hello All of you Dear new Friends!
    I am very new to the forum and am very excited to have signed up. I was hoping to discuss with someone my Mel's upcoming MRI and frankly looking for some emotional support as my dear friend goes through this. Over the past year I have taken Mel to six vets as a result of a "crying spell" he has every 3-4 months and we are now going to get an MRI at a University to check for SM. I was hoping someone could chime in and tell me their experience with this disease is similar to ours? Below I will list his symptoms and what his crying spells are like. I have around 30 videos and meticulous notes on the outbreaks so if you have any questions, don't hesitate to ask.
    Also I also welcome any and all suggestions that you have tried for treatment. Does anyone use non-steroid treatments? Mel REALLY reacts poorly to steroids and I typically avoid them. I am not sure that I would medicate him at this stage, I'll discuss it with our neurologist, but I do like to plan.

    .
    SYMPTOMS: Mel cries quite literally ALL night and all day. NO ONE sleeps. He does this for approximately 2-4 days every 3-4 months. (My vet thinks the outbreaks MAY be related to changing seasons, do any of you have this?) He does, however eat, drink, play, and exercise without hesitation or qualm. He also has normal stools. In fact he frequently initiates play and asks for walks. If he is distracted he MAY cry less, but he will still cry. If he gets excited (for food or a toy) he will cry more and louder. His ears are sometimes pulled back in stress, but mostly he just walks around normally and screams. He seems to have excess energy the FIRST day of "cries." After that, we are all tired. Mel year-round has a spot we can scratch and he will ALWAYS kick, walk away, and sometimes wine a little. He does roll on his back in a strange way (I do have a video of this) while playing with toys. He ALWAYS rolls on the toy so I am not sure if it's a symptom or if he is being silly.
    HOW WE REACT: Because Mel is clearly trying to tell me something I do treat him with more care and delicacy during these fits. He cries less if he is sleeping at an upwards angle on my chest, covered in a blanket with classical music on. Sometimes I can even give him some precious hours of sleep... Boy, does my butt fall asleep though. LOL
    I feel like I am walking a fine line between helping him to "focus" on what he is feeling vs making him feel loved and listened to. My husband just sort of acts like everything is normal, and goes through our exercise, play, eating routine as normal.

    How do/would all of you react? Do your dogs cry out but not show their normal signs of pain? I know that dogs can be hard to read in terms of pain or emotion, but I work from home and Mel and I have our own language. To be sure, though, during these times Mel doesn't communicate with me as he normally does. He is DEFINITELY distracted and seems to have a harder time tuning-in to me. This might be the worst part because I can't help him as much and I feel like I've lost a part of him. I hate it so much.
    I suppose this is the first time I didn't know precisely what is best for him, and that is such a strange feeling.




    Mel LOVES chasing Leaves...

  2. #2
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    Hi Melvin's Mum

    Yes, waiting for MRI results can be scary, and many of us on this forum can empathise with you! One of the problems with SM is that almost anything can be a symptom! And symptoms of other conditions can look like SM. Both my Cavaliers have it and neither of them has ever yelped or air scratched, but both of them have eye problems from the cerebral-spinal fluid in the brain getting backed up in the ventricles behind the eyes. So it's very difficult to say what are typical symptoms. For most neurologists, prescribing steroids is the last resort, if nothing else controls pain. But there are quite a few things that can be used before that stage and they can be pretty successful in getting pain under control and enabling the dog to live a fairly normal life. But it all depends on the symptoms your particular dog has, and it usually takes several months to work out the right medications for your particular dog.

    You will find it very helpful to look at Dr Clare Rusbridge's website (www.veterinary-neurologist.co.uk). She is the leading researcher into SM and has a very good FAQ section and a clear diagram of what exactly is happening inside the skull with SM. She also has an algorithm (treatment plans) intended for vets, describing what drugs to give for what and when, which your own vet might find helpful.

    Do let us know the results of the MRI - you will find a lot of help and support on this forum - many of us have 'been there and done that' - though we haven't yet designed a t-shirt!

    Kate, Oliver (aged 11) and Aled (aged 5), both with SM
    Last edited by Kate H; 5th February 2013 at 12:44 PM.

  3. #3
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    PS You mentioned that your vet thinks Melvin's episodes may be linked to seasons. Many of us find that our SM dogs have bad days when the air pressure changes rapidly, either up or down. This past winter has been particularly bad for this in the UK and even dogs whose symptoms are normally well-controlled with meds can become uncomfortable when the pressure jumps 20 milllibars in a day. So it might be worth checking with an online weather site for your area when Melvin has a bad pain episode, to see if there is a relationship.

    Kate, Oliver and Aled

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    Welcome and I'm sorry you joined this way, while waiting for Mel's MRI. I too joined CavTalk, but while waiting for surgery for SM for Riley who was almost 6 years old at the time. She had been misdiagnosed for years until I took her to a neurologist. He diagnosed her by looking at her for 30 seconds and confirmed it with an MRI. Kate is right though that every dog with SM reacts diffferently. Riley has never had a screaming fit, has never scratched. Her problem was in her vestibular system. Now she is on steroids - even after surgery, but her neurologist tried every other regimen of medication first, but prednisone was the only medication that helped her. She is one happy dog now.

    Be sure you bring Mel's videos when you go to the neurologist. They can be helpful if he's not in a pain/screaming cycle during his visit. If you live near Chicago, I'd be happy to give you Riley's neurologist's info. It's so hard waiting. Please do come back and let us know the results. Many of us have been through it - both the positive and the negative. We're here to help you any way we can.
    Bev
    Oliver (blenheim, born 3/2001), Riley (black & tan, born 8/2002,), Madison (ruby, born 9/2003), and Oz (tri-color, born 7/2007)

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    I live only a few hours from Chicago, and would love your neurologists information! THANK YOU!! I am trying to be selective and choose the best doctor for my sweet boy. There are no neurologists in my area- I'm in the Quad Cities. My life wouldn't be the same without him, so I'd do anything to help him. I am excited that it doesn't take long to determine the diagnosis once we get our MRI. I wasn't sure if they made you wait 24 hours or something torturous.
    How wonderful that your Riley is doing well now! If you don't mind me asking, how did vets misdiagnose your girl? We waited this long for the MRI because the vets kept telling me that Mel was pulling muscles because we hike and canoe a lot. As if I would ever push him that hard... He's carried for a good half of the hike. LOL

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    Thank you for your insights! I greatly appreciate them and for Dr Rusbride's website! I'll be pouring over it all morning.
    I will keep everyone up to date on Mel's diagnosis, and I do really appreciate the support. I must admit I was desperately hoping that Mel and Lanie would be these marvelous exceptions and not get the disease. Naive? Certainly Unrealistic? Sure... But a Cavie Mama has to hope. Lanie (at age 3) still shows no signs so I'm hoping she keeps that up. She will be getting tested as well, though, just to be safe.
    Again, Thank you for your input!

    Mel & Lanie

    Once we get through this we should really get T-shirts

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    Yes to everything. The steroids, the seasons changing, all the behaviours.

    My little girl just went through this, you can find a post of my video, and what happened from there if you search for "thistle had several pain episodes this weekend".

  8. #8
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    Good thing Thistle has such a wonderful Cavie-Mama! I read for awhile, and am so glad you were able to get her diagnosed and on a medical regime. Is she still doing well on her meds?
    My videos were key at the vet as well. Mel's episode had stopped before he went into the vet so I was able to show him what was really going on.

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    Hi and welcome. It's great that you have been so proactive and kept detailed records, taken videos etc.

    The things you describe sound very possible for SM --scratching in a certain area, shifts depending on weather, crying out, sensitivity to touch, sleeplessness, scratching worse if excited (this is because the cerebro-spinal fluid circulates faster in accordance with increased heartbeat which increases pressure and therefore, pain).

    If so, there are medications that may help; there is also a surgery that can halt progression and help. There is generally no across the board, best approach and much depends on what the owner is comfortable with, the MRI shows, the neurologist thinks, etc. Medications unfortunately do not address the underlying problem (nor does surgery) or halt progression. Meds can give a much better quality of life and should definitely be used in any dog showing any SM pain of any sort, IMHO. It isn't possible to know whether a dog will progress quickly or slowly; almost every dog with the condition will progress to some degree. It is known that pain correlates to the size and shape of the syrinx(es). Lopsided wide syrinxes cause more pain than narrow long ones, for example. For younger dogs showing symptoms, surgery is often the best option as those cases tend to progress the most quickly and have the worst symptoms.

    I would not bother to go to the very great expense of MRIing a dog showing no symptoms unless you really have money to spare and feel you must know her status at this moment. A three year old without a syrinx can still develop one at any time, any age, so all you get is a snapshot at that moment. A three year old with a syrinx and no symptoms would not generally be treated for anything, so again, there's no clear advantage in knowing if she has a syrinx (except personal information). A large proportion of dogs with SM have few to no symptoms. That said: it is clear that owners, including breeder owners, miss symptoms or think they are due to something else.

    The single biggest symptom of this condition is pain, expressed in varying ways. Crying out is a sign of pain. This condition has various types of neurological pain associated with it which can make it hard to see obvious signs of pain in a certain body area, for example -- the kind of thing most of us might look for as meaning pain. Even scratching is related to pain. With this condition, humans have severe headaches and horrible skin-crawling and other body sensations that are neurological in origin. That means we probably fail to see certain types of suffering -- how do we recognise a headache in a dog? Many humans with severe neurological pain appear 'normal' to friends and family -- indeed that is one of their chief complaints, that people dismiss their pain as they seem 'normal'. What human sufferers go through gives a lot of material for thought for those of us with SM dogs.

    Hopefully the MRi is scheduled soon as it sounds like Mel needs some help with his levels of pain. If it is far in the future you might discuss Clare Rusbridge's treatment algorithm with your vet as it lists many things to try. Do not use steroids -- those can influence the result of an MRI and also, should usually only be the last resort when other meds do not work as they have so many potential side effects (but can give back real quality of life when truly needed). I'd be talking to your vet about possibly starting Mel on cimetidine and gabapentin if you have to wait a long while.

    One thing that truly frustrates me just as a general point-- no, to be honest, increasingly makes me really angry -- is that so many vets continue to be so ignorant of SM, over a decade now beyond when information began to become available (I set up my www.smcavaliers.com site over 8 years ago!). Yes, it is a specialist condition, but if they are baffled by a condition, surely they can take a brief moment to try and investigate further? The fact that so many cavalier owners only learn about their dog's possible condition, and this disease, through googling and reading online makes me wonder how the heck a vet cannot take 2 minutes to simply google the symptoms and the breed, if they cannot figure out what is going on. Put in cavalier and any range of signs -- 'scratching' or 'pain' or 'yelping', such basic terms! -- and information on SM comes back within the first few results and sometimes IS the first result. Yes there may be other reasons for these symptoms of course and a good vet will check for other likelihoods too, but the association with SM has to be considered too.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  10. #10
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    Quote Originally Posted by MelsCavieMum View Post
    Good thing Thistle has such a wonderful Cavie-Mama! I read for awhile, and am so glad you were able to get her diagnosed and on a medical regime. Is she still doing well on her meds?
    My videos were key at the vet as well. Mel's episode had stopped before he went into the vet so I was able to show him what was really going on.
    She is doing quite well on the gabapentin, she's up to her old mischievous ways and even when she's being bad, I'm happy that she's able to be herself again.

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