My puppy was just diagnosed with SM

[Hopeful4now]

Hi Everyone,

I'm new here and hoping some of you can offer some kind words, advice and give me some hope. Long story short, my new puppy was diagnosed with SM. I've had her just a matter of weeks and it's devastating to say the least. I noticed weirdness from the beginning and am very familiar with SM but just told myself I was being paranoid until she had a 20 second screaming episode that reduced me to tears. She hid from me until the next morning (scared that I inflicted the pain? or maybe still lost/in pain? Don't know). She's from a breeder that's been doing this for 20 years and does health testing. I did my research, but sometimes these things still happen. ;-(

So immediately, I got an appointment at a fantastic neurologist and sure enough, my suspicions were confirmed via MRI. I'm leaving out some important details as to not identify myself since I'll be contacting my pup's breeder and don't know if she browses these forums. I clearly want my vet bills refunded and half the price of the dog. I've had my pup barely a month and she's under six months old. I don't know if it's right to ask for the full cost of the dog plus the vet bills or what.

I'm absolutely at a loss and haven't been able to eat. This news terrifies me. For now, she's on two medicines that the neuro says can give her a "normal" life, but I'm concerned because I know SM doesn't get better. I also know surgery isn't a magic cure. She's just so young that it's heartbreaking.

I'm consulting with two surgeons to get other opinions based on her MRI as to what her treatment should be, but does anyone have experience with SM in puppies? At a total loss as to where to go from here.

Any support would be much appreciated.

THANK YOU

[Tania]

Welcome to the forum and I am sorry this happened to such a young puppy!!!

My Molly was diagnosed with sm at 18 months old, initially the results were devasting and we thought we were going to lose her. We took her to see a neurologist who confirmed the diagnosis and prescibed pain relief and medication to slow down the progression of the disease. Our little girl is now five, the disease does not appear to have progressed and she has good quality of life.


You will have seen from your research there are a number of things you can do to help, eg. harness instead of collar, raise food bowls, moderate exercise etc.


I am wondering why you are consulting two further surgeons for opinions, are they also neurologists? What medication is she on? Is she insured? What is her name?

I can't advise you as far as the breeder is concerned. There are a number of people who are part of this forum with sm dogs who I am sure will be able
to give you more advice.

Gentle hugs to you both.

[Kate H]

Sorry that you have had this diagnosis in such a young dog. You don't say where you live (UK? US? ??), but why don't you get your neurologist to send a CD of the MRI to Dr Clare Rusbridge in London for a second opinion? She is one of the best-qualified neurologists in the world to interpret a scan and make suggestions about management of SM. She has an excellent treatment guide for vets on her website (www.veterinary.neurologist.co.uk), that you might like to show to your local vet, as he/she will be involved in the day-to-day care of your Cavalier; Clare is very experienced in treating SM. If you live in the UK you might like to consider a referral to her, as the ideal of course is for her to see the dog as well as the scan! But she does look at and advise on scans from all over the world.

Kate, Oliver (almost 11-year-old with SM) and Aled

PS The hiding from you after the pain episode may simply have been that being picked up was painful and she was making sure it didn't happen again, at least until the pain had subsided! One of my previous Cavaliers who I am fairly sure had SM from a young age (but undiagnosed as this was before the days of MRI scans) really hated being picked up - perhaps because it jolted his head and spine.

[Margaret C]

Hi Everyone,

I'm new here and hoping some of you can offer some kind words, advice and give me some hope. Long story short, my new puppy was diagnosed with SM. I've had her just a matter of weeks and it's devastating to say the least. I noticed weirdness from the beginning and am very familiar with SM but just told myself I was being paranoid until she had a 20 second screaming episode that reduced me to tears. She hid from me until the next morning (scared that I inflicted the pain? or maybe still lost/in pain? Don't know). She's from a breeder that's been doing this for 20 years and does health testing.

I am so sorry this has happened. Your poor little puppy. You must feel devastated.
There is a lot of us with SM dogs but your little one is very young.

I am surprised your breeder did not pick up on the weirdness if she kept your puppy until she was nearly five months?

I'm guessing that you may be in the USA. If your breeder was one of those that heart checks and MRIs her cavaliers after the age of 2.5 years and uses stud dogs with the same stringent tests then she has done everything she can and this could not have been avoided. She deserves our admiration and our sympathy.

If that is not the case, then her twenty years of breeding counts for nothing, "doing all the health testing" is a meaningless phrase, and your puppy is paying the price because she did not care enough to do all she could to produce the healthiest puppies possible.

I know it is very expensive to MRI dogs in some countries, but nobody has to continue to breed their dogs, nor do they have a God-given right to do so.
When they breed without properly testing and sell the puppies to pet buyers, the expense is transferred to the owner and the dog suffers the pain.

So immediately, I got an appointment at a fantastic neurologist and sure enough, my suspicions were confirmed via MRI. I'm leaving out some important details as to not identify myself since I'll be contacting my pup's breeder and don't know if she browses these forums. I clearly want my vet bills refunded and half the price of the dog. I've had my pup barely a month and she's under six months old. I don't know if it's right to ask for the full cost of the dog plus the vet bills or what.

Under the circumstances I would have thought that the whole price would be refunded.
As for vet bills I think this must be a matter of negotiation between you, although I would imagine she would offer something towards the cost of getting the problem diagnosed.
Did you have time to get your puppy insured?

I'm absolutely at a loss and haven't been able to eat. This news terrifies me. For now, she's on two medicines that the neuro says can give her a "normal" life, but I'm concerned because I know SM doesn't get better. I also know surgery isn't a magic cure. She's just so young that it's heartbreaking.

I'm consulting with two surgeons to get other opinions based on her MRI as to what her treatment should be, but does anyone have experience with SM in puppies? At a total loss as to where to go from here.

Any support would be much appreciated.

THANK YOU

You will get a lot of support here.

At the moment you sound overwhelmed and panicking and I would love to tell you that all will be fine, but in all honesty I cannot do that.
What I can tell you is that under the circumstances she is a lucky little girl to end up with with a loving owner like you, one who will make every effort to keep her comfortable and give her a happy life, however long that may be.

Tania's Molly has shown these little dogs can sometimes beat the odds. There is a lot of research going on and treatment and pain relief is improving.

Having a dog with SM means that you worry nearly every day but there is also a special bond that forms between owner and these very special dogs.

Stay with us and let us help you through this.

[Karlin]

Welcome; I am so sorry you have had this diagnosis.

Many of us have dogs with SM and it is difficult to make predictions or a prognosis. However a pup that young, already having screaming sessions, is by any measure, showing severe symptoms and in such a case, surgery is generally the only real option to try and give ideally a normal lifespan, otherwise you are looking at palliative care. The neurologist is wrong to say medications will provide a normal life and I'm surprised that was said;they only mask the pain of a progressive disease and in a severe case are really mostly providing palliative care for as long as possible. Most of us find as time passes, we need to keep adding in meds or increasing the dosage as well. They definitely can work for some dogs-- but generally not severe cases in young dogs. There is some evidence that in some dogs CSF inhibitors like cimetidine might slow the disease but this is not documented and is only anecdotal evidence.

You are in a terribly difficult situation. I think your options are -- to be blunt-- 1) depending on the MRI and how well meds work, you may find the kindest option for this pup is to agree with the breeder that you will provide palliative care until the pain is too great, when euthanising is then kindest and asking the breeder to replace the puppy; 2) treating with meds for as long as possible on your own; 3) opting for surgery.

All of these are very personal choices and some are extremely costly and may not be insured. And surgery may not work -- or could give a normal life, or a decent life managed on pain meds, or a shorter life but at least a period with some quality of life.

I don't think theres much point in getting several different opinions- I'd just talk to one other vet neurologist or vet neurosurgeon familiar with the condition and if you opt for surgery, go with someone who has done many of them. Be cautious of places advertising better results. There are a couple of approaches to surgery. But the generally aren't a lot of options and you will probably hear the same recommendations from all.

The worst cases are generally those where a puppy under one shows symptoms ( the younger the puppy, the more serious) and severe symptoms such as you describe generally really mean little quality of life over time, if managed only on meds.

In your shoes I'd be debating either opting for surgery or agreeing with the breeder to give palliative care for as long as possible and then a new puppy eventually at no cost.

I have three cavaliers with SM so know to some extent how difficult such decisions are. None of mine have ever had symptoms that severe. I think any neurologist who is really familiar with SM will advise surgery as the best option but with no guarantees.

[mommytoClaire]

Keeping you in my thoughts and prayers. And Margaret is right, this sweet puppy is so fortunate to have found you. You are a saint for taking care so quickly.

[Hopeful4now]

Hi again....first of all, thank you SO much for your thoughtful and kind replies. You have no idea how much your support means to me. I was going to reply to each comment but decided that I'd just reply to the thread and provide as much information as I can. I'm not mentioning the breeder, but at this point, I'm here for support so I don't care if she reads it.

First, here are the facts (and after I'll go into my thoughts about everything and how I'm coping. not well.) Will try to provide as much info as I can. Sorry if this is long!

--Got my pup at 13 weeks and had mild symptoms from the start. No one would say that's SM (mild scratching, biting, all "normal" if the dog didn't have SM. so i dismissed it as me being paranoid. But every so often she'd bit her hind quarters or let out a split second yelp as if someone had shocked her. That's what really made me worry. And then the big screaming episode which got me to the neuro)
--She is now just over 4 months old.-
--I'm American but live in France (and got the dog from a breeder in France). Send t the breeder a letter, as nice as possible, with copies of diagnosis and bills. Can't bear to talk to her on the phone. Too emotional. She does not know about this yet (mailed letter yesterday).
--As far as I understand it, pet insurance does NOT cover things like SM and the treatment. We do not have insurance.
--She is on 25mg of both Neurontic and Diamox (think that's the name) twice a day (remember she's only 4 months old). Strangely her symptoms seem to be worse after starting meds 3 days ago (how long do meds start to work?). It's been cold here so maybe that's why. Just more scratching and biting paws. She's had one 2-second episode of pain while scratching head for the past three days.

How I'm dealing/my thoughts:

This is going to sound horrible, but in a way, I'd almost rather she be put to sleep now. Not because we don't love her (I just got married over the summer, husband's first dog, this went so terribly wrong), but because we can't bear seeing her suffer and living with the threat of not knowing when she'll have an episode, if she's in pain, what we can do. Every day we love her more and it'll be that much harder to let her go. Does anyone understand what I mean? If she did not have painful symptoms, fine, I'd play around with the meds and try to put her at ease. But there is pain (apparently major) and I have no idea if her condition will worsen. Standing by waiting and wondering is the hardest thing. I hope I'm strong enough.

I don't think any vet would recommend putting her to sleep now, but I can't let her suffer. And as far as surgery goes, it would entail bringing her back to the USA (does altitude make her condition worse? Scared to fly with her), and putting her through surgery. Not saying it's easier for an older dog, but I guess I need to talk to Clare Rusbridge about what she sees as our best options. I'm trying to be her best advocate and have to be proud of myself for RUSHING her in the car 4 hours to Paris for an emergency neuro visit and getting her on meds within a day of her first painful episode, but at the same time, I'm so NOT proud with how this turned out and her possible fate.

Someone asked why I'm seeking out opinions of two neurosurgeons in the US. I think that in most cases, second and third opinions are important. If this were me, I'd go to a few doctors to get opinions on my condition, so I owe that to my little puppy. But I think I should start with Clare.

Looking forward to your replies. Also, if anyone PM's me (new to board, assuming that function exists?), I'd love to talk more via email. I'm just at a total loss. Trying to stay happy around her and will cry in the bathroom. ;'((

Thanks again for everything.

[Karlin]

I'm so sorry. I'd try to get a second opinion from Clare -- she does this for a modest charge. Why would you need to fly to the US (And this would take months to set up on a pet passport -- at least 7 months before a puppy could travel)? You could go to Clare by train in a few hours, and she is easily the world's leading authority on this condition. She's right in Wimbledon.

I would talk to Clare about her thoughts and ideas on prognosis with surgery. If they are poor, or if she is just likely to really suffer without surgery, I'd probably let her go, as difficult as that is. On the 2nd opinions -- again, as someone who has worked with a lot of the researchers over the past 8 years, and follows the research papers and been to all the international seminars, there really are not many options -- surgery or no surgery. Clare for example can give you very quickly, a sense of whether she is a good candidate for surgery by seeing her existing MRI. Beyond that there is no way to know how things will turn out but younger dogs respond best, and the sooner the better with a severely affected dog. It may be that she isn't a good surgery candidate which will help you make a decision. I think there is no point in even thinking of waiting 7-8 months for a pet passport to do this in the US -- I don;t think you have that much time and she will almost certainly continue to decline.

I'd also talk to your insurer. I think you need to take the time to get the whole picture of options before you make any decisions as it is all too emotional right now. Believe me, you do feel more able once you start to see clearly the options and possibilities. Not ever easy but you WILL feel more able.

[Hopeful4now]

Hi all, I'm kind of going crazy today and am posting again. My pup seems to be really lethargic today: wants to come in after going out for 2 minutes (normally loves the snow and cold), just stays on the couch with a little paw biting scratching (can't bear watching) and just kind of looks at me with a blank face. I have no clue if she's in pain or if the meds are making her sleepy and act like this. Could it be the meds or is she suffering? Not knowing is really killing me. And if it is the meds, why are they making her sleepy but not relieving the symptoms? Really going crazy. Like I said, she's barely 4 and a half months old and I'd hate for her to think this is what life is all about. Not sure what her future holds if she seems to be this affected at this age...

[Karlin]

Meds will sometimes make them sleepy initially. Sleepy is better than in pain. NB I added some further info to my previous post as well...