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Hopeful4now
11th February 2012, 06:53 PM
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
11th February 2012, 09:14 PM
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
11th February 2012, 09:26 PM
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 (http://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
11th February 2012, 11:34 PM
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
12th February 2012, 12:00 AM
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
12th February 2012, 03:31 AM
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
12th February 2012, 09:34 AM
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
12th February 2012, 12:36 PM
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
12th February 2012, 12:37 PM
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
12th February 2012, 12:46 PM
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...

Karlin
12th February 2012, 12:48 PM
It can take 2 weeks or so for meds to help. If they are not I'd see about getting her on prednisone just to stabilise the pain til you make some decisions/talk to Clare. Your vet can likely make the decision to add another painkiller -- I'd use her pain algorithm which can be downloaded from her website.

linderbelle
12th February 2012, 01:32 PM
Thank you to all that have replied to the writer. She found me through Abbey's blog and we have e-mailed a few times. I referred her to CT especially since she lives in the UK. I knew she would get good options. Only she can decide what to do but I remember reading and reading and reading constantly. I know how much CT helped me and I'm hoping there is somebody in the UK that she can talk to on the phone. That was a lifesaver for me.

Thank you all. I read her e-mails and I can feel her pain in her words and there are so many of us that know what she's going through.

Linda

Karlin
12th February 2012, 01:50 PM
Hi Linda: she is actually in France, which makes things a bit more difficult. However that would not be too far from the UK for a day journey or at least to have a phone consult with Dr Rusbridge, which would I am sure be very helpful.

I should have added to my previous posts that the choice between meds, palliative care, surgery or euthenising is very personal and can be made for many, many reasons.

From a personal advice perspective: IF I were determined to keep this little puppy and IF I had the resources and IF the prognosis were good for the attempt, I would not hesitate to opt for surgery. Those are a lot of different IFs to consider. I do think it is important to understand the consequences of NOT opting for surgery -- the odds are massively stacked towards a briefer lifespan and palliative care, especially if initial meds are not working to relieve pain and may need supplementation.

I do know of people who have had screaming dogs that are now close to 10 following surgery. Others have had problems either within weeks to months, or within a couple of years. It is all hard to predict.

Hopeful4now
12th February 2012, 02:03 PM
Hi Karlin, thanks so much for responding. First, about why I'd go to the USA. I'm American and have the support of my parents (and a place to stay) if I were to return home. I already have a pet passport and clearing to travel is a short process I believe. For the UK, I do believe there is a mandatory quarantine not to mention I know no one there, have no place to stay and would cost me a fortune in housing us in a hotel or rented apt until she's well enough to travel. Also, how much is surgery? US$5k+???

First things first though. I must talk to Clare.

And we do not have insurance. I looked into it before we got her and things that seem to affect Cavs (hip displaysia, eye, heart, SM, etc.) were NOT covered.

Kate H
12th February 2012, 04:57 PM
Many Cavaliers with SM are sensitive to changes in air pressure, which may be why the meds don't seem to be helping yet - I don't know how France is, but in the UK the air pressure has been high for a couple of weeks and is now coming down, just the sort of change that can affect our SM dogs. And as Karlin says, sleepiness for the first week or so is normal when starting on meds.

Hang in there - your pup needs you! :hug:

Kate, Oliver and Aled

PS The UK doesn't have quarantine for dogs travelling from EU countries (in fact the whole of Europe) and from the beginning of this year has radically simplified the pet passport requirements, so there should be no problems about taking your pup to see Clare via Eurostar.

Blondiemonster
12th February 2012, 11:00 PM
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...

Karlin, i dont think you are correct about flying to US from France or Belgium, Holland etc... I have done this twice now and its actually very easy... All you need is a vet to sign healthcheck form 2 weeks before take off and all shots taken care off. Flyig from US to france is also easy , though it takes an import permit from some countries in europe and also you need to go to the airport to get certain additional paperwork taken care of. Ive done it and its not that difficult... Flying to Europe is more complicated than back. England is another story and i dont know about irish regulations either but i do know about the mainland.


Sent from my iPhone using Tapatalk

Hopeful4now
13th February 2012, 12:40 PM
Hi all, original poster here. My pup is on day four of her meds and over the past week, she seems to be getting worse. It's alarming because she's so young (4.5 months) and in just a week I've seen symptoms get worse. Before the screaming episode that made us seek out the neurologist, she would scratch for 5 seconds max here and there and that was really it (occasional yelp as if someone pinched her). But now, she rubs her face, bites her paws, scratches more, has a "leg thump/air scratch" with her hind leg that goes on its own when she's sitting sometimes, kicks her back hind legs like a dog that just took a poop, has really sad looking eyes and if she's not sleeping, just looks kind of down and doesn't want to play. Oh, and just now was walking all curved like she just couldn't walk normally. This is so devastating for us.

In a way, I hope a surgeon will tell us her case is a great case for surgery, but it would involve use leaving France, putting her through that and to what end? Maybe it'll help her. Maybe it'll leave me broke with a dog that still suffers. It would be different if she were 5 years old and had a taste of a good life and seemed to be less severely affected. But is it morally OK to give her all kinds of meds hoping she'll feel better? I can't let her suffer silently.

I'm just rambling here. I know our choice here with her is our personal decision but I feel like I need to be "validated" morally by someone reading this. To give me permission to perhaps end it for her when we still remember her as our great dog and not a dog in constant pain. This SM doesn't get better...And I keep going back to the fact that she's so young. What will her life hold?

I've emailed Dr. Rusbridge and am awaiting her reply and will be in contact with a surgeon in the US for his opinion. But every day seems to get harder. And we just love her more and more...

Also, I have a request: I see my post has over 300 views and if you're reading this (even if you don't usually comment), would you mind sending some encouraging words my way? Maybe in a PM? I really need the support and encouragement today. I'm either crying or about one thought away from tears and even though I don't know you, sending some hope my way would really mean the world to me right now.

THANK YOU

sins
13th February 2012, 01:30 PM
I'm so sorry you're going through this.
We had to let our five year old go as a result of liver cancer quite recently.She had lived with symptomatic SM for the last two years of her life and it's not been easy.
If your puppy is walking all curved,she may have spinal curvature (scoliosis) which is a symptom of a syrinx.
Taking into account your puppy's age and the severity of the symptoms,I honestly fear that even with surgical intervention,she may be beyond help.
If she were mine,I would get a second opinion from Dr Rusbridge on the Mri scan.
Once the diagnosis is confirmed,and I had answers to any outstanding questions about her prognosis,I would choose to release her from her pain.
As pet owners,we are not obliged to preserve life at all cost.
The welfare of the puppy and the psychological wellbeing of the owner must take priority.
I can imagine how traumatic all of this is for you,but no matter what your decision will be,you will have the full support and understanding of everyone here who had had to deal with Syringomyelia.
Sins

Hopeful4now
13th February 2012, 01:41 PM
I'm so sorry you're going through this.
but no matter what your decision will be,you will have the full support and understanding of everyone here who had had to deal with Syringomyelia.
Sins

Thank you, Sins. That really means a lot to me. To compound things, yesterday was my six month wedding anniversary and instead of being happy, my husband and I were crying. I'm 100% consumed with this and feel that even if we try the meds, she'll still be suffering and for how long? A few months til they don't work or we have to up the dosage? And then put her to sleep when we love her more? Every waking moment is about our poor, sweet girl and it's no way to start a marriage. I'm not overweight at all and have lost nearly 4 kg in the past week. Can barely bring myself to shower because I don't want to leave her alone. She's here next to me sleeping. I hope she stays that way...

Thank u all

Davecav
13th February 2012, 02:14 PM
I am sorry that you have a poorly puppy. I agree with everyone so far - Claire Rusbridge is the first authority on MRI scans and SM, she has been treating and researching this for many years, the UK is at the fore-front on the condition.

Have you heard back from your puppy's breeder yet. I really do think you should give her a ring and let her know what is happening, firstly because she may well be as devestated as you are, and could offer much support and help, if as you say she has done all the health testing on her stock.
It is only fair to speak with her, after all she has bred your puppy, and if she is a responsible breeder she will want to be part of your decision making.

I keep in contact with Martha's breeder - even after a couple of years, and I know she would be very upset if I didn't let hear know of something, and did something behind her back, when she might be able to help.

Hopeful4now
13th February 2012, 02:36 PM
Have you heard back from your puppy's breeder yet.

Hi Davecav, just heard back from the breeder today and she was more concerned about why I drove four hours to Paris (and not somewhere more local). Well, because the best neuro vet in the country is in Paris, that's why. Anyway, she was shocked and says she's never had a dog with this (that she knows of) and wanted to see the diagnosis (which I sent). She seems to be in disbelief and will probably want the dog back if we want our money back. But that's not happening. If she continues to worsen and we choose to put her to sleep to let her be with the other Cav angels that have passed on, it's our choice. No way will I give her back to the breeder to possible suffer further (will be one of many dogs) just to get a few bucks. My pup's well-being and quality of life are leading the way for me right now and as soon as I can talk to Clare Rusbridge, I know I'll know the right course of action.

Karlin
13th February 2012, 03:21 PM
I believe there is one neurologist at least doing the surgery in France -- Clare will know if he is back there. He did a couple of studies on French cavaliers and SM. She would also know of others in Europe -- for example, Holland.

My mistake on US travel -- I was thinking of pet passports into non-rabies countries such as the one I live in, being in place to go into the US as well. But see you just need rabies done a couple of weeks in advance.

For traveling from France to UK -- you just need to wait three weeks after a rabies vax and have the correct paperwork.

http://www.defra.gov.uk/wildlife-pets/pets/travel/pets/pet-owners/#a

It is good to look up information and make sure you have all you need to make a decision before assuming you need to do anything as complex as flying halfway around the world. :thmbsup: The surgery is pretty similar no matter where you have it, if that is what you opt to do. Maybe the neurologist you saw is the same person.

French breeders have been very much in denial BTW on SM in the breed -- the French researcher mentioned said they used to call it 'the English disease'. Then he showed them half the supposedly clear dogs he tested had SM. There's a good SM website in FRance as well run by a very nice woman.

Incidentally, 300 views is not the same as 300 people viewing the thread. Lots will have revisited several times -- and this includes non members looking at thread and they cannot post.

If symptoms are getting worse then you need immediately to go work with your vet/neurologist to improve the level of pain medication.

meljoy
13th February 2012, 05:14 PM
Hi,
Im one of the members that have re-visted your post for an update. My heart breaks for you. I have a 5 year old cav called Leo. When he was 2 and a half he showed alarming symptoms that caused us to MRI him. The vet hospital where we had him scanned kept him in for a weeks observation before they finally scanned him.
It was awful, myself and my kids spent the whole week in tears and fearing the worse. These little dogs really get to us dont they?
Anyway just wanted to say Im sending best wishes and good will across the channel to you.

Mel X:hug:

Sydneys Mom
13th February 2012, 05:50 PM
I also have come back for updates. I have an almost 12 yr. old cav with severe heart disease. I have asked the members many times for help, advice and prayers and good wishes. The people here never disappoint.

The best you can do is get all the information you can so you can make an informed decision on the care of your pup.

Good luck and I all continue to check back and send good wishes your way.

Hopeful4now
13th February 2012, 05:55 PM
Thanks Sydneys Mom and Mel, that means a lot. Mel, did your Leo fare better on meds or did you go the surgery route? I hope he's ok. ;-)

Karlin
13th February 2012, 06:43 PM
FYI this was a sumary I wrote up a few years back on the French research:


Laurent Cauzinille, DMV, Ecole Nationale Veterinaire de Maisons Alfort, Paris, France
Neurology and Neurosurgery Department, Centre Hospitalier Fregis, Arcueil, France

‚€œIncidence of caudal occipital malformation syndrome and ultrasound, computed tomographic, magnetic resonance imaging findings in 16 clinically normal Cavalier King Charles Spaniel genitors‚€Ě
Authors: Jerome Couturier, Delphine Rault, Laurent Cauzinille

‚€œWe had two years ago, what we called ‚€˜the French exception‚€™. There was ‚€˜no SM in France‚€™,‚€Ě Cauzinille said. The French CKCS club referred to SM as ‚€˜the British CKC disease.‚€™ Then, a couple of cases appeared and now there are more than 25 known cases.
In November 2004 he gave the first lecture and produced an article on SM in cavaliers. In June 2006, the French club accepted his proposed study, which was small but with two key French breeders, conducted at the the Vet Imaging Centre in Paris.
* 16 dogs in the study
* all were clinically and neurologically ‚€˜normal‚€™ according to their breeders (who filled in a questionnaire) and verified by neurologist‚€™s tests (but not MRI)
*all were LOF (French kennel club pedigree) and breeding dogs
* Dr Couterier performed the neurological clinical testing, which included checking for: cervicalgia, hyperesthesia, scrathcing, ataxia, paresia, abnormal head posture, scoliosis, strabismus, facial paralysis, cranial nerve deficit
A number of study tests were then done.
*Ultrasound was performed on awake dogs with the goal of trying to find a less expensive screening test. Diameter of the spinal cord was measured at C1/C2 and at the level of the foramen magnum with the head flexed 90 degrees.
* Dogs were then anaesthetised, and a spiral CT scan was performed from the tuberculum sellae to the dens of the axis. Sagittal, transverse and dorsal images were taken (which is quite extensive). Linear measurements and area of the caudal fossa were obtained in the sagittal plane; height of the foramen magnum; area of the caudal fossa. In the transverse plane at the level of the widest part of the caudal fossa, linear measurement of the maximum width of the fossa was obtained.
*Then, dogs were MRId in a dorsal recumbent position using a 0.3T MR system -- the skull to the 1st thoracic vertebrae. If there, they measured hydrocephalus, ventricles, cerebellar size and degree of herniation.
As a result of these tests, the population was divided into groups: 1) normal; 2) syrinx; 3) hydrocephalus but no syrinx.
1) normal dogs: 8, 7 males and 1 female -- but had Chiari-like malformation
2) syrinx: 7 had SM, 3 males and 4 females, ‚€œa big shock to the breeders‚€Ě
3) hydrocephalus but no syrinx: 1 male
In all the dogs, no statistically significant difference was found in the measurements taken except in the hydrocephalic dog. With this group, 43% of clinically normal champion breeding dogs (genitors) have SM ‚€œso there‚€™s no more ‚€˜French exception‚€™.‚€Ě But this is only 16 dogs so researcher cannot give a percentage affected for France, but these were were all pedigree dogs representing 6 key breed lines all with common ancestors.
Q&A:
* There was no association between the degree of herniation and SM. Doesn‚€™t know if size of caudal fossa matters.
*They were able to pick up syrinxes with ultrasound
* They will repeat MRIs on the French dogs in 1 year and 3 years. He hopes King Charles Spaniels can be included in future research.
* The doctor doing the ultrasound was impressed with how much of the cerebellum could be seen with ultrasound.
* He thinks the next step is to keep looking at CSF dynamics -- ‚€œthe thing that will really help us to progress a lot.

Karlin
13th February 2012, 06:49 PM
French website I mentioned: this owner has lost one dog to SM and pushed for greater breed health in France.

http://www.fckc.com/

Hopeful4now
13th February 2012, 07:26 PM
Thanks so much Karlin. I really appreciate that you took the time to post that. Dr. Cauzinille is actually the doctor we saw at Centre Fregis in the Paris area. We drove 4 hours and sought him out because of his experience w/the breed and knowledge of SM. ;-) Going to check the website you posted now.

Love my Cavaliers
13th February 2012, 09:08 PM
I too am one of the repeat viewers to this thread since I also have a cavalier with SM. Riley started showing symptoms when we got her at 11 months of age, but was not diagnosed until she was 5 years old. Her symptoms were not at all like your sweet baby's though. Her SM affected her vestibular system so that by the time she was diagnosed she could barely walk unsupported. Medication had no affect on her symptoms at all. She had surgery right before she turned six years old (3.5 years ago). She'll never be normal and is on prednisone daily, but she is living and loving life and I am thankful for every extra day I have with her.

I found CavalierTalk while I was waiting for her to come out of surgery and like Joyce said, the members have been so supportive of each other. We are here for you whatever your decision is. Those of us with SM dogs know how hard and painful it is for them, and sometimes it's just too much. I can understand the daily tears. These little dogs just get hold of your heart and don't let go. My heart aches for you and your husband.

Margaret C
13th February 2012, 10:42 PM
Thank you, Sins. That really means a lot to me. To compound things, yesterday was my six month wedding anniversary and instead of being happy, my husband and I were crying. I'm 100% consumed with this and feel that even if we try the meds, she'll still be suffering and for how long? A few months til they don't work or we have to up the dosage? And then put her to sleep when we love her more? Every waking moment is about our poor, sweet girl and it's no way to start a marriage. I'm not overweight at all and have lost nearly 4 kg in the past week. Can barely bring myself to shower because I don't want to leave her alone. She's here next to me sleeping. I hope she stays that way...

Thank u all

This is so hard for you. I can so understand the fear that with every day you will love her more, and that emotional investment will make it even more heartbreaking if you need to make the decision to put her to sleep a few months down the road..

Reality is that may well happen. Then again it may not. Owning a symptomatic SM dog means you are going to live with uncertainty.

Take a deep breath and make your plan. Get the best advice you can and then go from there.
I'm afraid it will be for you to make the decision and that will depend on so many things.

For my own part I firmly believe that it is kinder and more loving to make that decision a day too soon than a day too late.

Reptigirl
14th February 2012, 02:33 AM
So sorry to hear your pup is suffering. I did not get to read every post but I just wanted to say I've been in your shoes! Our pup came to us at 12 weeks old showing symptoms. By 6 months old his symptoms were getting pretty extreme. While his MRI did not show SM at the time just CM his symptoms were very sever. He had bald spots on his head, shoulders and hind legs from all the rubbing, scratching & chewing. He had unexplained yelping fits, he would chew and lick his toes constantly, he had the typical "phantom scratching" while walking, we were unable to walk him on a collar or take him out of the house his fits got so bad.

Here are a few videos of our puppies symptoms BEFORE medication:
http://youtu.be/cFGwlwg4sgA
http://youtu.be/s8TIAuOVrhc
http://youtu.be/hMqE_pJWMW4


At 6 months old he was started on Lyrica and it was a wonder drug! He is now 2 years old. We switched to Gabapentin because it was much cheaper. He takes 100mg 3X a day and leads a nearly normal life. (He just can't tolerate wearing a collar or harness for more then a trip to the vets.) He also takes omeprazole once a day. He is nearly symptom free unless I'm late on meds.
http://youtu.be/RkODVTY2rN0

To make a REALLY long story short, I ended up rescuing his parents. It turned out the "breeder" was nothing but a puppy mill. It took me several months of convincing the lady the parents had to have it too. Well eventually I guess she realized her "breeder" dogs were in less then ideal condition and gave them to us... They we in horrific conditions. Once we got there immediate issues addressed we had the male MRI scanned. He has SEVER SM. The syrinx blocked nearly 90% of his spinal cord. He was losing control of his hind legs and has had some seriously scary pain episodes.... His neurologist gave him less then a year to live.... Here we are over a year later he takes 200 mg Gabapention 3X daily and omeprazole daily. He is doing fantastic considering how advanced his condition is. A few months ago he had a month long episode and we thought we would need to put him down. We did a short course of steroids and he has bounced back! At 5 years old he still acts like a puppy. He does occasionally have bad days but they are minor compared to how they were before medications. He definitly has more good days then bad days. When we have a bad day we do the best we can to keep him comfortable and usually in a day or two he is back to his happy self.
http://youtu.be/ecWD-TwW_wY


My only point here is even if they are affected young don't give up on them! While surgery may be the best option, it's not the only option. Medications have worked wonders for us. Our meds had to be adjusted several times find the right dosage. They also may need to be increased over time. But they do work. If you are unable to do surgery, medication is still an option! I would not put a puppy down without trying medication 1st. We opted out of surgery for both of our dogs. Eventually we may consider it for our pup but at 2 years old the medications have kept him extremely comfortable and nearly symptom free. We have pet insurance on them. Thankfully! We would not be able to afford there vet care without it. Insurance has really saved there lives.

Hopeful4now
14th February 2012, 07:30 AM
Hi Reptigirl, thanks for your post. Really gave me hope ;-) Is Lyrica in place of Gabapentin or can it be used with it? I'm not giving up on her before we give the meds a chance to work, no way in hell would I do that, but I'm also not going to lie to myself. Hearing your story just brightened my morning, so thanks for that. You said your puppy is doing well now, but did you ever get him re-MRI'd? Does he show SM now in addition to the CM? My little girl clearly had SM as well from the MRI. Today's day five of the meds, so let's hope they kick in.

Mini update: Last night she was more herself and played with my husband, but every time we take her out she just wants to come back in. Normally she loves to walk and run. Did a little scratching and during the night had one scratch with a tiny yelp. I can't help but think she's in pain when I look at her eyes and when she sits in weird places in the apt just kind of aloof. But if I worry about that, I really will go nuts.

Let's just hope today is a good day.

Thank you all for your kind responses. I truly mean that.

meljoy
14th February 2012, 03:33 PM
Thanks Sydneys Mom and Mel, that means a lot. Mel, did your Leo fare better on meds or did you go the surgery route? I hope he's ok. ;-)

Hiya,
Ive PM'd you

susandavis1
14th February 2012, 04:47 PM
I am sorry to hear that your puppy has sm. I know there are people on the board here you will have lots of good advice for you. What is your puppy's name? Sending you postivie thoughts :flwr:

Blondiemonster
15th February 2012, 03:43 AM
I have also been reading your posts. Im so sorry about your pup. I know all too well how i felt when my girl showed symptoms out of the blue and i had her mri'd. We opted for meds since it helps my girl. Her story is similar to reptigirls 5 year old. A syrinx just as bad and she is a trooper. We take long walks, she runs of the stairs at 20 miles an hours, she jumps on the couch and plays fetch. Ocassionally we also have days that are less good and i just let her rest and do things at her pace. I appreciate and cherish every moment with her. Thr love from these creatures is unbelievable. Theu give you everything , and i owe her everything as well. She has given my life the sunshine i never even knew was possible. Even with it all; every minute with her is so worth it. Please do not give up hope yet. Surgery can be a miracle for some dogs. Its a fair chance for your pup. I am not saying you should do it at all costs but if Claire says it gives your pup a chance i would consider it for sure.. I too have heard of a vet in holland that does this surgery but obviously clare is the best. Whatever decision you make we will be herr to suppirt you. Once again; try to be strong for her! She needs you right now; she needs her mommy to be as calm and have as much sleep as possible... Love to you


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Autaven
15th February 2012, 04:57 AM
I'm one of the people who's been viewing your thread as well - and while I'm sorry I can't be of help advice wise I just wanted to send you some positive thoughts from our family. We've just went through the same ordeal with our first dog who has just turned 3 and I know how heart wrenching it is.

Hopeful4now
15th February 2012, 08:06 AM
Thank you all for your replies...just a short update:

Dr. Rusbridge emailed me back and I sent her my MRI. For anyone wondering, a phone consult is 190 pounds. Yeah, I see myself filing bankruptcy now... She'll review the MRI later this week and we are setting up the consult for next week. I also spoke with a trusted neurosurgeon in the US (did two surgeries on a friend of mine's dogs years ago and the dogs are both alive and well) and he said right now that although her symptoms seem "bad," she only has one small syrinx and can most likely be controlled with meds for now. He does not recommend surgery at this time because there are no guarantees and he isn't confident she'd fare any better at this time than with meds, but to MRI her in three months to see if the syrinx has gotten bigger or if any new ones have formed and to reevaluate then.

For anyone who asked about insurance, I don't have it and here's why. The only US carrier that covers Americans living abroad is VPI as far as I know and they do NOT cover any type of hereditary condition like SM or the care for it. Trupanion, 24 Petwatch, etc. are not available to me in France. French carriers do not cover SM and the problem now is that when I move back to the US and get insurance then (if i decide to), this SM is a preexisting condition so even if Trupanion did cover some of the care, they wouldn't in the future since it's preexisting.

Thanks again for all your well wishes. I feel a little calmer today knowing that I'll be speaking to Clare soon and am doing everything humanly possible for this little girl. I'll update this thread when I have some news.

Pipsqueak7
15th February 2012, 09:54 AM
As you will know I am new here also, but I am NOT, unfortunately new to the worry and panic we have because of our dogs. I completely understand your anxieties, and also pleased that you are feeling a little calmer now. Being and keeping calm is not always very easy!

I am also sorry to hear that you have not been able to insure your little one, as I know from past experience that has been a great help. However, they are our 'babies' and if we had not had insurance, we would still have strived somehow to finance whatever necessary to give them a good quality of life. All you can do is try to help them which is exactly what you are obviously doing.

Kind regards, and thanks for taking the time to post on my thread. These forums can be a great help as I discovered when my dog was so ill last year.

Karlin
15th February 2012, 12:24 PM
One additional thing to consider about medications–you will easily, within 2 years or so of paying for something like gabapentin and especially for Lyrica, which many more severely affected dogs need, reached the amount of money you would have paid on surgery upfront.

Setting aside all the other considerations and concerns that influence choices -- when I 1st started treating Leo, I didn't expect him to live such a long time on medications alone (I really assumed he probably would have just a couple of years of life given that he had a fairly wide syrinx, and I vowed to give him as normal a life as possible–as it turned out, he has quite a short but wide syrinx that is very centrally positioned and which has never given him any serious pain sessions even over all these years) and I also didn't expect that I would need to keep increasing the dose of some of the more expensive medications–this was 7 years ago, when the condition was less well understood. If a dog is kept on medications, this will require regular return visits to a neurologist to keep adjusting them–it is far better to be seeing a neurologist than just working with a vet who won't really understand the condition or the usage of medications that are not actually officially recognized for animal use, such as gabapentin. In retrospect, I do wonder if surgery would not have been the better choice from the start–and it certainly would have been more cost-effective, assuming that I didn't need to keep giving medications over the 6 years or so that I have. I have easily surpassed €5000– which is $7000 or so–in medication for Leo. As they get older, many of them do need to switch to the far more expensive Lyrica–Leo is about at that point, because the level of gabapentin he is currently on is actually a bit above what is generally recommended as the limit for a dog of his size. If I switch to Lyrica, that will more than double the monthly cost of his medications. It would be quite rare for dogs that have had surgery to need to go on something as strong (and as expensive) as Lyrica.

These are all elements to consider. I think often people choose not to opt for surgery primarily on a cost basis, but in reality, that's probably a false choice. Even if I had taken out a loan on the interest rate of the time, which I would easily have paid back long since, it would have been significantly less for me to opt for surgery than to have gone for the alternative of 6 years of medication, with that continuing on into the future at ever greater expense.

I suppose another consideration is that I think severely affected dogs that are treated only on medications–and often will have these up and down days when they go through extreme pain–cause a lot more distress and anxiety for owners, who can be woken many times in the middle of the night by shrieking sessions, as many here will have done, or who will have to endure daytime pain sessions that can be very disturbing, and there is just a lot more general uncertainty. I've only had to go through one such session, and that is when Leo fell off the bed and we think, probably jarred his syrinx. I don't think I could go through that on a regular basis, but that's me. If he had repeated that session, I already had plans to take him to London for surgery with Dr. Rusbridge–at the time we thought it might have been a sign of a worsening of the condition where these sessions would become more regular. However, he has never had one since. He now has a heart murmur as well, and it may be that the other scourge of this breed, MVD, becomes the greater problem. I've been thru MVD with one of my Cavaliers who passed away last summer, and to be honest, it was far worse than I have dealt with in terms of worry and distress, compared to 3 Cavaliers with SM (two very mildly symptomatic and one moderately symptomatic).

I do think that you probably will want to make a decision one way or another fairly quickly as you get a sense of options. Postponing surgery lowers the chance of success and allows the condition to worsen, especially when it seems to be worsening so rapidly. For example, there is no way I would advocate waiting months to do something–I would either be trying to arrange surgery as soon as possible, either in France or over in the UK, or I would make the decision to proceed with medications and hope for the best and as much time as possible. Getting a 2nd professional opinion will be helpful to you.

Hopeful4now
15th February 2012, 01:06 PM
Karlin, thanks for your post. I understand all sides of this SM mess and unless Dr. Rusbridge can tell me that my dog has GREAT odds (which I don't think anyone would say because they just don't know) for having a pain-free and medication-free life after surgery, I don't think I could put my pup through it. She wouldn't know why we're doing this to her, why she feels bad. I mean yes, it's a small period of time of pain for a shot at a normal life, but maybe it's just the newness of all this and my emotions are talking here. Like I said, if surgery was a slam dunk and wasn't so experimental and iffy, I'd do it in a heartbeat. But it's not definitive. But I haven't spoken to Dr. Rusbridge yet, so we'll see if my opinion changes...

As far as going somewhere else in Europe for surgery if I even go that route, I'd rather take her back to the US and live there for a bit where I have the support of my family and friends. I have no one in London nor do I have a place to stay. So the add'l costs there would extreme. Oh, and the good thing about living in France is that unlike the US, medicines and vet costs (compared to the US) are MUCH cheaper. But we do plan on moving back to the US within the next three years.

As far as moving fast, I think I need to seriously consider everything that's going on here and take a minute to think everything through. My dog got an MRI within a day of having her first episode, so I have to be proud that I got her treatment and just take a week or two to really think about all our options and after speaking to Dr. Rusbridge.

The breeder received my diagnosis, bill and letter explaining the situation in the mail yesterday, but I have a bad feeling she will not pay me a dime. Oh well, that's life and the dog is my utmost concern.

Will update this once I talk to Clare.

I was hesitant to post my dog's name because it made all of this too real, but I'm strong enough to do it today. My dog's name is Dagny.

Blondiemonster
15th February 2012, 02:00 PM
Thank you all for your replies...just a short update:

Dr. Rusbridge emailed me back and I sent her my MRI. For anyone wondering, a phone consult is 190 pounds. Yeah, I see myself filing bankruptcy now... She'll review the MRI later this week and we are setting up the consult for next week. I also spoke with a trusted neurosurgeon in the US (did two surgeries on a friend of mine's dogs years ago and the dogs are both alive and well) and he said right now that although her symptoms seem "bad," she only has one small syrinx and can most likely be controlled with meds for now. He does not recommend surgery at this time because there are no guarantees and he isn't confident she'd fare any better at this time than with meds, but to MRI her in three months to see if the syrinx has gotten bigger or if any new ones have formed and to reevaluate then.

For anyone who asked about insurance, I don't have it and here's why. The only US carrier that covers Americans living abroad is VPI as far as I know and they do NOT cover any type of hereditary condition like SM or the care for it. Trupanion, 24 Petwatch, etc. are not available to me in France. French carriers do not cover SM and the problem now is that when I move back to the US and get insurance then (if i decide to), this SM is a preexisting condition so even if Trupanion did cover some of the care, they wouldn't in the future since it's preexisting.

Thanks again for all your well wishes. I feel a little calmer today knowing that I'll be speaking to Clare soon and am doing everything humanly possible for this little girl. I'll update this thread when I have some news.

Is this neurosurgeon dr.west by any chance? Sounds exactly like something he would recommend. U can PM me. :)


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Karlin
15th February 2012, 02:35 PM
Actually to give some context -- I would consider the few days most dogs need to be relatively back on their feet post-surgery to be a fractional level of discomfort compared to a single screaming session of a dog suffering the pain of this condition. The titanium mesh surgery is more involved (and I am in no way convinced it is better or has appreciably better results) and requires longer crate rest but I would guess in 95% of cases the dogs are surprisingly 'normal'' within 24 hours -- wagging tails, walking around, eating normally. Most immediately improve and pain disappears becaUse pressure had been fully relieved. The surgery is not that complicated although it requires skill and has had an extremely low rate of problems during or immediately following surgery as well (the issue is success longer term). The biggest problem really is trying to keep the dog relaxed and with a low level rather than normal level of activity. Clare supports allowing normal activity within 2 weeks or so of surgery (not lots of activity but just letting the dog behave as normally around the house, no long term crate rest as in needed with the titanium surgery).

Given the very young age of your pup and onset of symptoms, I don't really know if surgery will remain a viable option for very long going on past experience of recommendations by neurologists and neurosurgeons (Dr Marino at LIVS in the US for example would generally recommend moving immediately as each day/week can lower success chances, but each case is individual and also different people feel different ways -- part of what makes this all so hard). Unless the pain is very much under control with meds, I also certainly would never fly a dog a long distance with this condition and if I were going to do it, would be doing it in weeks. But you will then have to make a commitment of many months -- I'd think at least half a year top a year -- back in the US for recovery.Cabin pressure will generally not aggravate SM but the stress of travel, turbulence etc, may. I've done that journey with a dog and it is very long and stressful. Some have done US internal flights and found them difficult; others have been OK so it is hard to predict.

If your pup is continuing to yelp etc that you do need to get back in contact with Laurent about adjusting meds, maybe adding in prednisone for example. That can all be done by phone generally without cost as a follow up consultation. The one thing you CAN do right now is adjust meds so that she is not experiencing pain. If she keeps on having pain despite adjustments then of course that has to influence the speed at which some decision is made as well. There are lots and lots of options available to manage pain in the short term while you decide what to do longer term. :thmbsup: Waiting three months and re-MRIng sounds a reasonable approach if the meds can deal with her pain. But another MRI will of course be expensive.

A phone consult is generally little different than someone showing up in the office, excluding a physical exam, so the costs are going to be similar. It takes the same amount of time for the neurologist to analyse the MRI and talk to the client. That's about normal for a consult with a specialist (and I know Dr Rusbridge is swamped with requests to look at MRIs so this does affect her work schedule and has to be charged for from the practice's point of view). And there will be a need to have regular consultations either with vets or neurologists I'm afraid -- it is the nature of the disease for all of us. :( There are costs, costs and costs no matter what route is taken -- both financial and mental.

Love my Cavaliers
15th February 2012, 06:41 PM
Regarding surgery, Riley handled the recovery just fine. She was older than Dagney - I don't know if that made it easier or harder. She lives in a multi-dog house so that was definitely tough to keep her calm with three other cavaliers around, with one particularly rambunctious male under the age of a year. She had the titanium mesh implant and has had no complications from it in the 3.5 years since her surgery. As I posted before, she is still on medication (prednisone) and most dogs still are, even after surgery. What surgery did for her was to improve her quality of life immeasurably. She could barely walk unassisted before, her vestibular system was so badly damaged by her SM and her rear legs were so weakened. Her syrinx covered almost her entire spinal cord and her neurologist diagnosed her SM as advanced and severe and complicated by a cerebellar cyst. After surgery and with daily prednisone (which did not help her pre-operatively) she can walk, but still can't jump. I have stairs for her to get onto chairs, the sofa and our bed. Even the one step into the house is sometimes hard for her. But she runs in the yard, goes for walks, chases (and kills) chipmunks, and is loving life and I treasure every day with her. She still has times when she hides under a table or chair to get away from the ruckus the other dogs create. I assume she must be having some pain at those times. But she never cries out, just hides.

So, I guess this was all to say that surgery is not such a great evil and the recovery is hard, but probably psychologcially harder on you, the owner, than the dog. I know I'm the only one who's posted about surgery, but for Riley it was the right decision. Good luck with your consultation with Clare. I hope you get some clarity.

Karen and Ruby
15th February 2012, 10:40 PM
Hi there again,

Give Dagny a gentle hug from me!!

I dont have expertese in this area, regarding surgery as I havent chosen that for either of my dogs!

I agree with you through about not wanting to put them through it- I couldnt live with my self if it went wrong and I lost them when I could've had a couple of years with them on medication. Nothing to do with costs!

Ruby has been on the same medication for over 2.5 years now with no need for changing- and that is Lyrica, some days if she seems uncomfortable I add in Metacam and occasionally have given her an extra Lyrica!

She is over 5 now and diagnosed at 2.5 with moderate SM- her syrinx classed as very wide and short and not central.

I know that being so young the odds are against Dagny but she may surprise you all- from the Neurologist saying her syrinx is still fairly small Id be hopefull that it wouldnt get any bigger with the help of a diuretic and that the pain could be managed as well.

I hope you get some help from Clare- she has been great for me and my dogs!

Good Luck and Im praying for you both!! Try to get some rest as you need to be strong for your little girl- she needs you!

lovecavaliers
16th February 2012, 04:43 AM
Hello, I was just reading your posts and wanted to say I am very sorry to hear about Dagny. My boy showed signs at under one year and is currently being managed on medication (he is now 3). Take it one day at a time.
You are in great hands with Clare, as you cannot ask for a better expert on this horrible disease.
You and Dagny are in my thoughts and prayers. Hang in there:)

Hopeful4now
16th February 2012, 02:28 PM
Hi all, just a quick update from the original poster:

I had my phone consult with Clare Rusbridge this afternoon. For anyone out there wondering the cost, it was 255 pounds and surgery (I was curious and asked) is around 4,000 pounds in her office. She was very nice and thorough and spoke to me a bit about the condition and what could happen in the future and then we went over treatment and where to go from here. Bottom line is that because my pup is so young, she does NOT recommend surgery at this time and believes the Chiari malformation is what's causing the pain and most likely not the early stages of SM (although she has that as well in its beginning stages). She told me that we are going to get her comfortable on meds and she'll liaise with my French doctor who she knows well so that we're all on the same page. The youngest pup she's done surgery on was 9 months old in case anyone was wondering. The reason for not recommending surgery is because Dagny is still growing and if she were to do the decompression surgery now, it's very likely that my dog's body is still forming and the problem may reoccur. Our goal now is to get her comfortable and living a normal life and then re-MRI her in six months' time and go from there. If her condition has progressed, then we can reevaluate then. She said she's seen pups like mine have MRIs like this and then stabilize and not necessary go from painful to horribly worse, so she did give me hope, but we still have to be realistic.

She also cautioned me about doctors rushing into surgery when there's no science to say that it will help my dog. She gave me a very honest opinion and wasn't a Doomsday kind of person or someone who was looking through rose colored glasses. We discussed everything matter of factly, got our priorities in order and have a plan. So I know I just need to enjoy my dog, keep giving her the meds, and hope for the best. Let's hope her condition does NOT develop quickly and that this will all work out in the end.

I feel that Dr. Rusbridge's consult was really expensive, but for me, it was worth the peace of mind knowing she agreed with what my conservative surgeon in the US said. So if everyone is in agreement, I'm happy because I know I've done everything humanly possible for my dog. And I can rest easy knowing that. If this were my child, I would have gotten at least one other opinion, so it was money well spent.

As for the breeder? No response to my letter and bill, but I'm not expecting anything from her. Probably in denial.

I want to say thank you to everyone who has reached out to me and offered their kind words, opened up their homes to me and supported me. I probably won't have many updates for this thread (unless something horrible happens), but I will continue to check my PMs in case anyone wants to reach out. I just think emotionally, I may want to distance myself from the trauma of the past week for now. But I'll be back to support you all anyway I can because this is a great community. ;-)


And also, Blondie, I tried to PM you but your inbox is full!

Karlin
16th February 2012, 03:17 PM
Thanks for that -- very informative and will be very useful to others in future situations. She is quite conservative on surgery as well and really you need that kind of feedback from someone who really knows CM as well as SM and is as experienced in looking at syrinxes and the malformation. Interesting that she doesn't recommend surgery on younger pups as some others especially in the US pressure for surgery. It makes a significant difference to recommendations I am sure that the syrinx is very small -- I missed that on your previous posts.

Most neurologists are not very good on CM -- while for most dogs CM alone doesn't seem to cause issues (horrible if it did as over 90% of cavaliers have it :( ) for some it seems to cause really significant and painful symptoms. Part of the mystery of this condition -- probably connected to some dogs having quite different patterns of CSF flow. CM alone in cavaliers is its own area for future study and research.

She knows Laurent very well so that will be well worth your consult to have them talking to each other. Best of luck in the future and let us know how Dagny gets along.

Hopeful4now
16th February 2012, 05:15 PM
Thanks Karlin, both the conservative surgeon in the US who I know and Dr. Rusbridge believe her screaming episode was caused by the CM and not SM at this point as well as her symptoms since the syrinx is small. But the next six months will determine what happens in terms of treatment--whether the SM progresses or stays as it is. She said the surgery is actually more effective when dogs are painful from CM and that dogs with SM that are too far gone usually don't have the best results. But for right now, her SM is in the beginning stages and she's not done growing. Yes, she knows our French doctor well so they're working together in this. So so relieved for now to know there's nothing more I can do. I think that was part of what was making me so upset, not knowing what to do. But I've done everything I can for her.

Also, the stress came from this all happening so fast. The episode, the diagnosis, the consults, not knowing what to do, etc. I'm going to regroup for the next six months, enjoy the hell out of my dog and if and when the time comes in six months after she's re-MRI'd, I'll make a decision with clarity as to how to proceed.

Oh, and I spoke to the breeder on the phone. She was really reasonable and felt horrible. No excuses, just genuine concern and our talk went really well. She's refunding half of what I paid for the dog. Better than nothing!

Will absolutely keep you all posted. Dagny is doing great today!

Blondiemonster
16th February 2012, 05:56 PM
I cleaned up my inbox!!


Sent from my iPhone using Tapatalk

lindylou
17th February 2012, 03:40 PM
hi
i'm so sorry to read about dagny and i wish you all the luck in the world
with him
please give him a kiss and cuddle from louie and his mum

ByFloSin
17th February 2012, 07:01 PM
Most neurologists are not very good on CM -- while for most dogs CM alone doesn't seem to cause issues (horrible if it did as over 90% of cavaliers have it :( ) for some it seems to cause really significant and painful symptoms. Part of the mystery of this condition -- probably connected to some dogs having quite different patterns of CSF flow. CM alone in cavaliers is its own area for future study and research.

Funny you should say that Karlin because I had to laugh when seeing my vet about Rebel today. He had checked Rebel from head to tail, discussed his problems sensibly and at length with me, then remarked that 'Cavaliers have CM because of their domed heads'. I wanted to shake my head in disbelief but circumstances demanded the diplomacy of leaving the explanations until next time I see him.

Karlin
18th February 2012, 06:46 PM
Especially as they don;t have domed heads -- they should have flat skulls across the top as you well know! It is King Charles spaniels (Charlies) that have domed heads.

I did check on the issue of surgery on puppies though :). There may have been a misunderstanding between advice for an individual case, and advice generally, as there doesn't seem to be any issues with surgery IF needed for a puppy -- however it is a lot less likely that younger pups will have extensive syrinxes as they take time to develop, and that influences the decision to do surgery as does the fact that if the issue seems to be more CM-rlated.

In the case of a small syrinx/no syrinx where pain might be from CM and a puppy is still growing it makes sense to wait, give meds, and see where the situation is in a few months' time. :thmbsup: At least, that would be a *conservative* approach, but there's no definitive right or wrong except to keep a dog as pain free as possible.

For anyone in a similar situation reading this thread, I wanted to make sure of the options. :)

BrooklynMom
20th February 2012, 09:21 AM
Wow, I am just reading this whole thread. What a crazy ride you have been on. Much has been said in terms of advice, so I just wanted to say that I will be keeping you, and Dagny in my thoughts and prayers. Keep smiling at your pup and love as hard as you can. Enjoy your everyday moments, your new husband and your sweet pup. Life will take care of the rest.
Hugs to you!

Davecav
20th February 2012, 11:23 PM
Hi all, just a quick update from the original poster:

I had my phone consult with Clare Rusbridge this afternoon. For anyone out there wondering the cost, it was 255 pounds and surgery (I was curious and asked) is around 4,000 pounds in her office. She was very nice and thorough and spoke to me a bit about the condition and what could happen in the future and then we went over treatment and where to go from here. Bottom line is that because my pup is so young, she does NOT recommend surgery at this time and believes the Chiari malformation is what's causing the pain and most likely not the early stages of SM (although she has that as well in its beginning stages). She told me that we are going to get her comfortable on meds and she'll liaise with my French doctor who she knows well so that we're all on the same page. The youngest pup she's done surgery on was 9 months old in case anyone was wondering. The reason for not recommending surgery is because Dagny is still growing and if she were to do the decompression surgery now, it's very likely that my dog's body is still forming and the problem may reoccur. Our goal now is to get her comfortable and living a normal life and then re-MRI her in six months' time and go from there. If her condition has progressed, then we can reevaluate then. She said she's seen pups like mine have MRIs like this and then stabilize and not necessary go from painful to horribly worse, so she did give me hope, but we still have to be realistic.

She also cautioned me about doctors rushing into surgery when there's no science to say that it will help my dog. She gave me a very honest opinion and wasn't a Doomsday kind of person or someone who was looking through rose colored glasses. We discussed everything matter of factly, got our priorities in order and have a plan. So I know I just need to enjoy my dog, keep giving her the meds, and hope for the best. Let's hope her condition does NOT develop quickly and that this will all work out in the end.

I feel that Dr. Rusbridge's consult was really expensive, but for me, it was worth the peace of mind knowing she agreed with what my conservative surgeon in the US said. So if everyone is in agreement, I'm happy because I know I've done everything humanly possible for my dog. And I can rest easy knowing that. If this were my child, I would have gotten at least one other opinion, so it was money well spent.

As for the breeder? No response to my letter and bill, but I'm not expecting anything from her. Probably in denial.

I want to say thank you to everyone who has reached out to me and offered their kind words, opened up their homes to me and supported me. I probably won't have many updates for this thread (unless something horrible happens), but I will continue to check my PMs in case anyone wants to reach out. I just think emotionally, I may want to distance myself from the trauma of the past week for now. But I'll be back to support you all anyway I can because this is a great community. ;-)


And also, Blondie, I tried to PM you but your inbox is full!

How long was her phone consultation? it's a load of money for a telephone call.

Hopeful4now
21st February 2012, 09:54 AM
Hi Davecav. The phone consult was about 45 minutes. She spent a little bit of time going over CM and SM in general and then what she saw on my dog's MRI. She's staying in touch with us and is working with our French neurologist as to the best course of treatment. She also prepared a written report on her findings. It wasn't just a phone call and then we'll never hear from her again.

I think part of me shelling out the cash was because she is pretty much THE source on SM and one of the most educated people in the world on this condition, so getting her opinion was part of what calmed me down (even if it was what I heard from other docs). My stress was coming from thinking there was more I could be doing, but she reassured me that what we were doing was right on point and there's nothing more to do right now except wait. So yeah, to get that relief, I paid a lot of money but I know myself, and if I hadn't talked to her, I'd probably still be unable to eat and panicking over treatment for my dog.And thanks, Brooklynmom and everyone else for your support. Dagny is doing OK but seems to be a little bothered lately (aggressive face rubbing, paw biting, funny walks/scratches and a few yelps yesterday out of nowhere), so we may up the meds. It's so hard to watch. Let's hope she settles down shortly.

Davecav
21st February 2012, 11:08 AM
Thanks for your reply.
I do hope her treatment will alleviate most of her symptoms, good luck with her.

mommytoClaire
26th February 2012, 04:07 AM
Well, I apologize, because it's only today I am finally catching up, after posting somewhere in the first couple pages.

What a trip this has been for you! First, I wanted to say, I have thought all along that you were so wonderfully proactive, and I am proud at how you've handed this, I cant imagine being in a foreign country (I'm an American), with a new marriage, and a new pup with this awful disorder! Bless your heart! When I read about you wanting to come back to the States to have the surgery, I totally, totally understood where you were coming from. I would feel the same. Just having the support of family and friends during a tough time.

But I am soooo glad that both your consults have given the same recommendations. And I'm not surprised about the comment about waiting till she is older and is fully developed, I wondered about that aspect as I was reading this thread.

Anyway, I just wanted to say that I think you are very brave, and have done a wonderful job with all this. Dont doubt yourself. I'll be saying prayers for your sweet Dagny! And most importantly, for you! Take care of yourself!!

Hopeful4now
26th February 2012, 08:15 AM
Thanks MommytoClaire, that's really sweet of you to say. We're doing the best we can and I just keep putting myself in her shoes thinking what I'd want someone to do for me.

As for how she's doing now....well, her symptoms seem OK, but she's more bothered now in terms of scratching/face rubbing/funny walk like her body is being pulled into a curve and then air scratching. It's hard to watch. And then while scratching her head, she'll do a quick kind of muffled 2 second yelp (did that 4 times yesterday). It's been really distressing. Our French doctor seems to be on vacation because he's not returning our emails so I feel a little helpless now. I'm upping the dose of her Gabapentin myself to 10mg/kg 3 times/day (she was on 25 mg three times/day and is 4.5 kg now) because she seems so bothered sometimes. Poor thing. I don't know if her small syrinx is getting worse or if her symptoms are just becoming worse. Definitely doesn't seem better. I just hope this all settles down when we get her dosage right. It's emotional torture just watching and waiting.

Thank you all again for your support.

Portia
28th February 2012, 12:41 AM
I've been away from the board for awhile and am just now checking back in. Bravo to you for being so proactive and taking such good care of little Dagny. Both of you are in my thoughts.

mommytoClaire
28th February 2012, 01:15 AM
I'm Cindy, and please no need for thanks. I know how important it is when going through something difficult to have the support of others, even if it's people you really don't know.

You know, I know it's distressing....and I would never want to lessen what you are seeing, but you are truly trying your best. I personally have found that every dog is different in how they express pain.

I had a dog before my Claire who was very vocal about his pain. He developed pancreatitis and was screaming the day we took him to the Vet. It about gave me a heart attack, I was so emotional over it! He did recover. But he was the
dog that would cry out so desperately it scared us sometimes. He was just so much more vocal than any dog I've ever had.

So I know this is hard. Please do let us know how things are going.

cavalover
28th February 2012, 01:16 AM
Thinking about you and Dagny! I hope her symptoms get better soon. You are doing a great job of looking out for her

Pamela Warrington
28th February 2012, 03:03 AM
Hi,
I know that compassion you feel for your little one. My Isabelle was digonosed in 2010 she was 6 years old. My Doctor started her off with Tramadol 1/2 tablet twice a day for the pain, until her Gabapentin 50 mg 1 capsule twice a day, and Omeprazole 4mg 0.6 mL daily when that kicked in, she no longer needed the pain meds. That took a few weeks, but now she is doing excellent, they have not changed her meds, and she has been doing well. We go for rechecks every 6 months To a wonderful Neurologist Dr. Berry from Southern California Veterinary Speciality Hospital in Orange County Ca. People come from all over to see him I really love him, seeing he specializes in this breed make it easier for me knowing Isabelle is in good care. My prayer for you, is that you will find wisdom and peace in the decisions for your precious baby. One thing that helped Isabelle during her painful times, was I would take a warm blanket wrap it up like a sausage, then she would prop her head up onto it, It really helped relieve the pain. I also would slowly move her on her back and place to rolled up blanket on the sides of her and that helped her out a lot too. And the raised water and food bowels. Colder weather can seem to trigger the pain so maybe keep her warm and comfortable. I also bought steps so it limited her from jumping up onto the coach or bed. I hope your puppy feels better soon, I strongly believe that the Lord always gives us what we need, praying all will go well!

Blessings,
Pamela

Hopeful4now
28th February 2012, 09:46 AM
Thanks Pamela. I'm going to continue doing everything I can.

On another note, I didn't want to post another thread on this, so if anyone is reading this and has suggestions, I'd really appreciate hearing them. Basically, Dagny's meds are reformulated into her dosage by the pharmacist into capsules that you can split open and shake out the powder. I have to do that because she won't eat the capsule on its own even in food. So we've been shaking the powder out into all kinds of things and she seems to like it in little pieces of frozen cannelloni that we microwave. That was going great until last night when she sniffed it and walked away. We tried apple sauce, cream cheese, peanut butter, etc but no. This scares me because I don't want to force the pills in her mouth (3 times a day, not fun) but at the same time, she NEEDS to get her meds. Does anyone have any suggestions? This morning, i made a scrambled egg and she ate it w/the powder, but I'm worried her taste for the egg will wear off. HELP!
Thanks in advance

Sabby
28th February 2012, 09:56 AM
Thanks Pamela. I'm going to continue doing everything I can.

On another note, I didn't want to post another thread on this, so if anyone is reading this and has suggestions, I'd really appreciate hearing them. Basically, Dagny's meds are reformulated into her dosage by the pharmacist into capsules that you can split open and shake out the powder. I have to do that because she won't eat the capsule on its own even in food. So we've been shaking the powder out into all kinds of things and she seems to like it in little pieces of frozen cannelloni that we microwave. That was going great until last night when she sniffed it and walked away. We tried apple sauce, cream cheese, peanut butter, etc but no. This scares me because I don't want to force the pills in her mouth (3 times a day, not fun) but at the same time, she NEEDS to get her meds. Does anyone have any suggestions? This morning, i made a scrambled egg and she ate it w/the powder, but I'm worried her taste for the egg will wear off. HELP!
Thanks in advance


I am not 100 % sure if it was Gabapentin but I have seen a post by Nicki (I think) about not giving just the powder as it will affect her stomach lining.

Kate H
28th February 2012, 10:27 AM
Oliver takes his pills quite happily in pate one day and Brie cheese the next (I have a dog with elegant tastes - Aled gets in on the act as well, minus the pills!), and small chunks of sausage when we're away from home or out for the day. I imagine Dagny's dosage will go up as he grows, as it's based on weight to some extent, which will save having to split capsules - but then you have to get the capsules down him! All I can suggest is keep trying him with different foods until you find something he really adores, and even then ring the changes occasionally. Cavaliers are also notorious, of course, for using food as a way of getting attention, which may be behind Dagny's being OK with something for a bit then refusing it - one way of ensuring an interesting diet and being the focus of attention! Although ideally gabapentin should be given at regular intervals, it probably wouldn't hurt to take the spurned food up and put it down again an hour later - offering absolutely nothing else, not even a treat, in the meantime. Dagny may also be at the age that he needs to move to one less meal a day (2 instead of 3?) and simply isn't really hungry. Don't know if any of these ideas rings bells!

Pamela's advice was spot on. Another thing that some people find helpful - though I've never needed it myself - is a Lycra suit, which gives them steady warmth and support: www.k9topcoat.com (http://www.k9topcoat.com) and look for Lycra bodysuits.

Keep trying!

Kate, Oliver and Aled

Hopeful4now
28th February 2012, 11:16 AM
Thanks Kate.

Just to clarify, I'm not opening the pills to split the dosage (they're already reformulated to her dosage). I'm opening them because she won't take the capsules whole in any food. She'll lick around it and leave the pill there in the bowl. The vet and pharmacist said it was OK to give her just the powder, so I hope I'm not doing any stomach damage. Ah, I hate all this! I'll keep at it...

Sydneys Mom
28th February 2012, 05:28 PM
Thanks Kate.

Just to clarify, I'm not opening the pills to split the dosage (they're already reformulated to her dosage). I'm opening them because she won't take the capsules whole in any food. She'll lick around it and leave the pill there in the bowl. The vet and pharmacist said it was OK to give her just the powder, so I hope I'm not doing any stomach damage. Ah, I hate all this! I'll keep at it...

I don't know if you have Pill Pockets in France, but I use them for Sydney. He gets 11 pills every morning and evening and it was a chore to medicate him. Now I wrap a few pills at a time in a piece of the Pill Pocket, then put a very small piece of deli meat around that. He takes them with no problem now. The Pill Pockets come in chicken and beef flavor and I also think there is a hypo-allergenic one too.

Are the meds helping Dagny any at this time?

Hopeful4now
28th February 2012, 06:02 PM
Pill pockets aren't available in France (not that I've found), so my parents sent them to me and they should arrive tomorrow or Thursday. The thing with Dagny is that she'll take something in her mouth but then spit it out and dissect it. That's when she'll realize there's a pill and eat around it (like with Turkey or a piece of meat). She's not like my dog as a kid who would gobble everything in one bite w/o even chewing! But we'll try.

11 pills? Bless your heart! wow.

Dagny is doing OK, but has several scratching/face rubbing/weird walking, air scratching/twisted kind of bothered walking episodes each day. Not sure if the meds just help with pain (so no more screaming episodes) or are supposed to decrease the # of obvious bothered symptomatic episodes. Will have to ask the neuro that next time we speak. When she's outside, she's normally fine and not bothered. No one has a clue she has a problem at puppy school. It's when we're in the apartment, I think she realizes something is bugging her. It all just sucks to be honest, but we love her!

Thanks all for your support.

Kate H
28th February 2012, 07:43 PM
The advantage with pate is that it's soft and even a very small bit can be wrapped round the capsule so that it's not visible, but is just a tasty little something to swallow whole - and most dogs do seem to adore it. I find with even thin slices of cooked sausage that Oliver has to chew it and I have to watch that the capsule doesn't get tucked up his gums and spat out later - the pate goes down in one gulp! You could try giving it to Dagny as a reward for other things (like learning to sit) and when he's used to it, sneaking in the capsule - it's just a pity it's so messy!

As far as medication goes, it can take several weeks or even months to get the dosage and particular drug right. Gabapentin is not a pain killer, it's a pain preventive, it builds up a barrier to prevent the pain surfacing rather than letting pain happen and then dealing with it. So it should over time also deal with other symptoms like scratching - which are also symptoms of pain or irritated nerves.

Kate, Oliver and Aled

BrooklynMom
28th February 2012, 09:30 PM
People have great thoughts on pill taking...but for Brooklyn, I had to just shove hers down her throat. A vet nurse taught me how to do it so it goes right down (you can google it, it is the placement on the back of the tongue (not all the way down) so as not to induce the gag reflex so the won't swallow but just enough that it is back there and has to be swollowed. I put it on the back of her tongue, close her mouth, tilt her head back and stroke her throat. That helps and she swallows it right away! Now it is SO easy, she even sits and waits for me to do it ;) But it is just a learning curve and the key to putting it in their mouth for them is to not put it twoards the tip of the tongue so they can spit it out, but not so far back that the gag. It is like right on the hump on the back of their tongue. For training, I also put a little honey on the pill, so she loves it. I let her have a little lick, then open her mouth (easy to do with your fingers opening from the sides of her mouth, almost where the jaw joint is) and down the hatch it goes. It still tastes sweet with honey, so I think she just forgets and then she gets to lick my fingers when it is done :)

I have also heard to coat (not a lot, just the lightest bushing) the pill in butter, this helps it go straight down. A lot of capsules get sticky when wet (i.e. when they hit the mouth) and so they cannot swallow them. This will fix that problem right away. I have tried it, it's pretty cool :)

Hopeful4now
28th February 2012, 09:51 PM
Hi, that's great advice BrooklynMom. It actually made me laugh. Just imagining you doing that. Really great advice, gonna try that when she stops eating scrambled eggs...and will try to make it really pleasant. Not a shoving, but a gentle placement on the back of the tongue so she has to swallow. Love it. The issue w/the powder is that she can smell it and taste it. Would be better if she just took the capsule.

BrooklynMom
29th February 2012, 04:11 AM
Yes, and when you put it on the back of the tongue...just lightly hold her mouth shut, tilt her head back and stroke her throat. She will for sure swallow that way :)

Kate H
29th February 2012, 11:01 AM
'The issue w/the powder is that she can smell it and taste it.' I can sympathise - I take gabapentin myself and if I hold it in my mouth too long before swallowing it tastes really horrible! A capsule well wrapped up in something should be easier.

Kate, Oliver and Aled

Tania
29th February 2012, 02:54 PM
We have made pill giving time a big game! We have 3 Cavaliers on medication 6 x per day. The magic word in out house is "sweeties" in a high pitched silly voice.
We would notmally give the Gabapentin or Zitac in something taty, cheese, sausage, biscuit. It only needs to be small. Dotty is the only one who is not on medication
but she sits and waits her turn too:p. They are in a routine and often remind us when it is "sweetie" time. It also makes it easier if someone else apart from
us has to give them their "sweeties".

Tania
29th February 2012, 07:44 PM
ps. it might be worth considering a different way of medicating that does not involve touching the head and neck area which is probably very sensitive.

Hopeful4now
23rd March 2012, 04:21 PM
Hi all, just a small update from the original poster on my dog's condition.

First, the biggest news is that she was spayed yesterday and is doing great! Not in any discomfort, just started eating and drinking again, walking and playing with her toys a little and overall is doing great. Such a relief. I knew it had to be done based on several doctors' recommendations but was understandably nervous. My vet here is wonderful and did everything to minimize her discomfort so Amen for that!

In terms of meds, I don't think we've exactly found the right dose, but we're getting close. We've upped the gabapentin twice and she's at 75 mg 3x/day (5.5kg dog now at just under 6 mos of age). Her symptoms are drastically reduced and I don't feel so hopeless anymore. I don't know how long I'll have her but I do know that I've done everything possible to get her comfortable.

She takes her medicines with the pill popper, I took someone's suggestion to call it "time for sweeties" and we alternate meds with half a treat. She runs over like a big goof to get her sweeties, so I'm really glad it's not hell to administer meds.

We're also looking into phytotherapy (science of using plants medicinally) and have a consult with a vet who practices that here next week and also do Reiki once a week and I do feel it has calmed her inside. Just had a session last night after the spay and today and she's less restless and more relaxed. Could be a coincidence but I doubt it. Basically, I'm pursuing every avenue possible as long as it doesn't harm her. We have to try, right?

As for me, I sleep easier now and am not as emotional. I know I have a fantastic girl here who would bend over backwards for me. All and all this situation is far from ideal, but I'm getting through. I know she knows I love her and I'm doing everything I can so I try not to beat myself up too much. Just trying to keep on moving forward...
Thank you again for all your posts and concern. Means a lot.

Sydneys Mom
23rd March 2012, 04:58 PM
Thanks for the update. Glad to hear that she is doing well after her spay. It is always so stressful when our little ones need to have any kind of procedure done and a big relief when it is all over.

It's nice to know that the meds are making a difference and giving her some relief. In time I'm sure the right dosage will be found. You really are doing a good job getting her all the help she needs.

puppysmummy
23rd March 2012, 11:29 PM
What drug is she on?

mommytoClaire
24th March 2012, 04:26 AM
Great news on how well the spay went. Every dog is different, but I'm delighted yours has adjusted and is already on the mend.

Now to just get momma on the mend too....but it does sound like you are on your way. Hopefully the med change will last a long time, and put you in a better place for her next exam at closer to 1 year old.

Take care of yourself and. R sure to update us again.

mommytoClaire
24th March 2012, 04:27 AM
Great news on how well the spay went. Every dog is different, but I'm delighted yours has adjusted and is already on the mend.

Now to just get momma on the mend too....but it does sound like you are on your way. Hopefully the med change will last a long time, and put you in a better place for her next exam at closer to 1 year old.

Take care of yourself and be sure to update us again soon.

BrooklynMom
24th March 2012, 09:32 AM
This is such a good update :)

Hopeful4now
24th March 2012, 01:16 PM
Neurontin and Diamox for now but trying to get her off the Diamox for something that doesn't have the chance of causing stomach issues in the long-term.

meljoy
24th March 2012, 04:12 PM
Hi,
Thats great to hear....glad you are feeling better too.

mommytoClaire
29th March 2012, 10:24 PM
Any new update on Dagny?

tracey30
15th April 2012, 11:58 AM
Hows dagny doing now??

Hopeful4now
15th April 2012, 06:47 PM
Hi Everyone, I posted an update last month but just for anyone who may still be following this:

Dagny seems to have adjusted well to her meds and while she still has a handful of scratches per day, they're no longer frantic and mornings don't start with crab walks that bring me to tears and excessive face rubbing. If her meds are late or the weather is bad, symptoms are worse, but instead of 20+ instances a day of symptoms, now it's probably more like 5 or so and they're short. Not 10 minutes of symptoms that just make me feel helpless.

She has fun at puppy school, loves running at the park and just tries to be a normal dog. I'm hopeful that the meds will continue to bring her relief. We're also speaking to a phytotherapist vet to see if there are some safe natural remedies to add to her treatment for her overall well-being, etc. The next hurdle will be when she's re-MRI'd in August (6 months from first one) to see if her condition has progressed. Hoping no, because I really, really don't want to go the surgery route. But we'll cross that bridge when we get to it.

Hope all your dogs are well!

tracey30
15th April 2012, 08:50 PM
That's great news, so glad she's doing well :)

mommytoClaire
15th April 2012, 10:17 PM
Thank you SO much for the update. Many of us have continued to be worried for Dagny, and are thankful for the improvements she has experienced.

Please do keep us up on how she is doing.....

ladybug11
16th April 2012, 07:05 AM
I just joined the site but I read through this thread...what a heart wrenching story. I am snuggling my own puppy now and I actually got a tear in my eye imagining what it must be like. It's crazy how much you fall in love with your dog, and how quickly it happens..

SO glad to hear Dagny is doing better. She is very lucky to have such a good mama. How long are you in France for? And what did the breeder say?

Hopeful4now
16th April 2012, 07:59 AM
Ladybug, I live in France, not here on vacation or a temp assignment or anything. We will prob move back to the US though sometime in the next 3 years...

The breeder was horrified and said no dog in her line had ever had symptoms (that she knows of, and i believe her. but symptoms are easy to miss if they're mild and you don't know too much about the condition, or if they happen when you're at work and your dog is home). She was nice about it and we keep in touch, I'm not one to make enemies, but I don't trust her 100%. She refunded me half of what I paid for Dagny, so that was something, but I wanted a full refund. Oh well. The breeder had been breeding her dad for a few years, I think he's had 15+ litters in the past 4 years and never had an issue so she was convinced it was the mother (first litter, 2.5 years old). So she had her spayed the week after I gave her the news and placed her in a pet home. So I guess that was responsible but I would have stopped breeding the dad too as a precaution or at least MRI (not a guarantee, could be a carrier even if he's clear), but that costs a lot of money.

Oh well, we are where we are now, so just one day at a time....

Kate H
16th April 2012, 11:09 AM
Dagny's mum wrote:If her meds are late or the weather is bad...

It seems to be changes in air pressure that cause the problem, so I find it's worth keeping an eye on the weather forecast (the BBC weather site is very good and gives you air pressure for 5 days ahead, so you can see patterns). In the UK for example, the pressure plummetted last week and Oliver was having more trouble with his eyes (presumably because the pressure was affecting his dilated ventricles). If you're allowed to make adjustments to Dagny's medication (ask your neurologist), this is a situation where you can to some extent foresee problems and an extra bit of gabapentin or whatever Dagny's on might help.

So glad Dagny's doing well.


Kate, Oliver and Aled

PS Just checked the UK weather for my area (West Midlands) and over the next 3 days the air pressure is forecast to drop a huge 45 millibars, so I'll be taking precautions to keep Oliver out of bright light.

Hopeful4now
14th May 2012, 07:58 AM
Posting this update in my original thread here too:

Hi Kate and everyone else who has been so kind with your advice and overall interest in my girl Dagny....hope all your dogs are well!

Dagny is doing alright actually! The weather is warming up here so it makes trips to the park even better. ;-) We've had to switch to a raw diet due to some diarrhea issues from kibble and she's loving that. The only problem is that there are no commercially made frozen or freeze dried raw diets here (like Nature's Variety or Primal or Stella & Chewy's), so I do it myself.

As for her CM/SM, I'd say she's stable, but we had a bad period of nonstop rain for about three weeks, so as you can imagine, it wasn't great for her symptoms. When it's time for her next gabapentin dose, she has more symptoms, but they go away quickly. She'll have a few scratches and face rubs throughout the day, but not 20+ like it was in the beginning. And the ones she does have are 10 seconds or less and are NOT vocal. She hasn't had a vocalisation of her pain (not even a small one) in well over a month.
The tricky part now is knowing where that "sweet spot" is in terms of meds. I think when she was on 75 mg 3x/day of gabapentin, for about a two week period, she was nearly symptom-free, but she's growing (just over 6kg and 7.5 mos old now) and her dose was upped to 100 mg 3x/day as her weight increased. We just upped her Diamox (CSF inhibitor) to 30 mg instead of 25 since that dosage was never increased. Her neuro doesn't want to dose her to the max for her weight, so that way we have room to add in more if she needs it down the road, so I"m OK with that. I don't know if we're aiming for 0 symptoms or just no vocalisation.
I can't help but be paranoid sometimes when she seems to be scratching more over whether or not she's getting worse. I just have to keep focusing on the positive and live every day with her to fullest. I don't think she's worse.

The plan was to re-MRI her in August (6 month mark from the diagnosis) to see if there's been progression, but I was thinking about this and may opt against it. What will it change? Except have me be out a bit of money. If she's the same, great. If she's worse, what will that mean? That I'll rush off with her to the US for surgery? I don't know. I want the best for her, but not sure surgery would be the best route for us. I just don't know. If my surgeon in the US said it has a 70%+ chance of helping her live a full life, great, I'd probably do it, but those odds aren't the norm. I think if her symptoms worsen, we'll of course MRI her to see if the SM has progressed, but if she's the same in August? Not sure I'll MRI her. It's just all up in the air.

I love my dog with all my heart and I can't imagine our lives without her. So so so happy that we made it through the tough spots (thanks to all of your support here on the board). I was so scared we'd have to put her to sleep. She's like a whole new dog now (with the occasional symptom) and I just hope it stays stable for the rest of her life. We can hope, right?

Thanks again.

Hopeful4now
22nd May 2012, 07:01 PM
Hi Everyone,

No big update here. I was just writing to let all of the Cav Talk family know I've started a blog that I'd love for all of you to subscribe to. It's about my life in France and of course my pup although there is no mention of SM. I want people to see my pup for everything she is and not her neurological condition. I'm not posting the link here for two reasons 1) Not sure if it violates the terms of service here and 2) I don't want my posts here on SM to be associated with my blog.

I write on all kinds of things (nothing much yet because it just started) but the focus will be on my dog (minus the CM/SM) and life in France. We recently switched to a raw diet so that'll be an upcoming post.

I'd be happy to send you the link via PM. I hope you'll all take a look!

Thanks again for all the support. It's been quite a journey...

tracey30
22nd May 2012, 07:47 PM
Hi, I'd love to read your blog if you can pm me the link please, will look forward to reading it!

Tracey

Nicki
22nd May 2012, 08:32 PM
There is no problem with putting a link to your blog [we only object to breeder adverts, spam, unsuitable material, that sort of thing]

However if you do not wish to link to here, you can put the link to your blog in your profile,
[I'm somewhat technically disadvantaged and even I managed it, so it must be easy!]

Go to SETTINGS [top right, 2nd one in]
EDIT PROFILE
scroll down to MY SETTINGS, click on EDIT PROFILE
scroll down to HOME PAGE URL and insert your blog link there.
then SAVE CHANGES [bottom left]


People who want to see the link to your blog click on your name, a box comes up and they click on VISIT HOMEPAGE


Hope that works, it's just worked for me to put a link to our photo site :cool:

Hopeful4now
22nd May 2012, 08:47 PM
Thank you Nicki, I'd rather just ask those interested to PM me. I don't want anything I post here about my dog or SM to be associated with the blog. ;-) Thank you, though! Just not ready for that.

mommytoClaire
27th May 2012, 06:38 AM
Thanks for the update. So glad to hear that Dagny is doing better, and pray that she continue's to do so.

I know that this has been a tough journey for you both, but I think you have handled it brilliantly. And I think if she is doing well, I would feel th same as you and wait on another MRI.

Thanks again! And hugs to you both!

Joanie Davison
29th May 2012, 03:22 AM
What a moving and lovely testament to Dagny, what a special girl she is. I would like to commend you for your honesty in all of these posts...what great lengths we go through for our beautiful babies and well, well worth it. Best of luck to you, your husband and mostly Dagny.

Hopeful4now
29th May 2012, 11:16 AM
Hi Joanie, thanks so much for your post. I'm just trying to do the best I can and it's been a crazy journey. I won't dare go back through what I wrote on here because I know I was in a really bad place mentally, but I think now, I can see SM for what it is. NOT a death sentence but something that has to be managed and if we need to pursue the surgery route in the future, we will. I hope others who were/are in my same shoes can learn from something I've written here -- even if it's just how NOT to flip out on an online forum. ;-)

My girl is so special -- you all know how these dogs capture your heart. I have a stomach bug and she sat with me while I was puking and is here with me on the couch. These dogs love like no other and what kind of person would I be if I didn't do the same?

Gosh, what a road this has been. Again, thank you all for your support.

emmaK11
3rd June 2012, 10:38 PM
It breaks my heart to hear your story. Especially because it is somewhat similar to mine. I have a 16 month old tricolor that I got from a breeder at 8 weeks old. Around 6 months, she stopped eating and was painful when I would pick her up. She would also scratch at the air very slowly. My regular vet immediately suspected CM/SM and referred me to a specialist. I saw the specialist immediately and had an MRI, spinal tap (to rule out possible meningitis) and blood tests done(to check for Lyme's). The only thing that came back was the Chiari Malformation on the MRI. Right now, she does not have SM but she does have the malformation which could (as we all know) lead to the progressive disease. The neurologist put her on prednisone, tramadol, omeprazole, and gabapentin. She improved over a few months and I haven't seen any progression in any of her symptoms since then (its been about 8 months). She is now only on the gabapentin for neurological symptoms and the omeprazole to decrease the fluid. Now, I know that your case with your puppy is more severe but I just wanted to write to you because I want you to know that you're in all of our thoughts and that you aren't alone. This has been the hardest thing I have ever had to deal with thus far in my life. To watch an animal suffer doesn't seem right. And I too feel helpless as an owner. I immediately contacted the breeder within a week of her diagnosis. At the time, the breeder sent her condolences and said that we would definitely work something out. After many emails were exchanged and i had been sufficiently strung along, my breeder did not take any responsibility (despite the fact that she never even did SM testing in her dogs) and she decided to blame it on me and write it off as me being irresponsible. So not only am I dealing with the heart breaking condition of my dog, but my breeder is unwilling to help me in any way. Im a young adult and I am in school studying to be a vet. My dog has inspired me in so many ways and she really has saved me. I cannot imagine my life without her but I truly trusted my breeder and now I feel a bit jaded. I understand what you're going through and how you feel. And I hope that this is of some consolation for you to know that you are not alone. I really hope the best for you and your family.

Hopeful4now
4th June 2012, 06:51 PM
Thanks for your post Emma. It was great to read another story like mine. I'm so sorry what you've been through as well...

Hopeful4now
30th August 2012, 07:51 AM
Hi All,

Karlin asked about how my Dagny was doing in another thread, so I thought I'd update my post here.

News is mostly good. She's now 11 months old and is well-managed on gabapentin and diamox. She's not symptom free (worse in the morning upon waking) and still will have maybe 5 scratch sessions but not nearly as bad or as long as they were in the beginning. She'll do some face rubbing and maybe 2-3 times/month, one of those scratch sessions will result in a small yelp but not a SCREAM or anything close. But on most days, if you were here with us, you wouldn't see anything out of the ordinary. She loves going to the park, playing and being spoiled to death. She's stable now and has been for a few months, thank goodness.

BUT I can't help myself sometimes and I worry about if she's getting worse/when/how. If I should rush her back to the US, stay for 3 months to get the surgery and let her heal and then come back to France. I don't know what the right answer is and neither does anyone else. It's just too unknown. The plan was to move back to the US in the next year or so but who knows what will happen.

I think if we start to see a decline (hoping that day doesn't come for many, many years), I will probably take her to England via car (no air pressure to deal with like there is on a plane) and have Dr. Rusbridge do the surgery instead of the US (if we're still living here in France when that time comes). I struggle with knowing what path to take with her. Do we do surgery preemptively to attempt to "fix" the issue before it gets worse or do we just treat with meds as long as we can? She's still young. I don't know the best answer. I just don't know. I do know I love her to death and only want the best for her. I really wish surgery was a given like a knee surgery or something. I'd blow my savings and do it tomorrow if a doctor could tell me there would be a 90% good outcome. But we just don't know!

I thank you all again for your support through this. I truly mean that. It hasn't been easy at all.

I actually feel comfortable now posting my blog. Here's a recent post about Dagny doing what she loves best, running in the park. There are some pics of her and you can see her smiling:
http://ouiinfrance.com/2012/08/24/pics-of-the-month-august-paris-photographer-lindsey-kent-of-pictours-paris/

Diane

duseskiz
18th January 2013, 02:33 PM
Hello Diane,

I am very new to the forum from Turkey. I have 3 years old girl with no signs of Sm and I hope she won't have! However, i am trying to know more about this awfull illness. The more i am learning the more i get scared. even though my girl has not signs she is under risk like the other cavaliers, so, it is good to know about itin last month my 4 friends' babies had Sm surgery by the same neurologist, he is said to be best one in Turkey. SM is not well known in here, most of the cavalier owners dont know about it. So,I keep asking myself if my baby has it later on(hope not) is the surgery only option for us? Also, i question myself that is the neurologist doing the right thing without considering medication, just going trough the surgery? owners sees the signs, get the MRI s and the surgery. I looked lots of MRI scans to understand where i need to look at and what i should see if there is SM. İn fact, i asked my friend to show me her girl's MRI. I hope i express myself very clearly, if we need to deal with this in future i need to know what i am gonna face.

So, i read you journey and i felt very sad at the beginning! and then i relieved your baby is doiıng ok and you dont loose your hope! please keep going like this cos i am less scared by your unware help :)


Ebru&Duses

Istanbul,Turkey

Karlin
18th January 2013, 02:58 PM
Hi Ebru: You are definitely a responsible cavalier owner and lover to make sure you know about this condition. :) Even though the number of cavaliers that are affected over their lifetime is high -- probably around 70% according to studies -- most of those will not have serious symptoms and some will not have any symptoms. But almost all cavaliers have a skull too small for the brain and that is obviously not normal -- so the goal must be to reduce the risk of this widespread breed problem, which breeders can do by working with researchers, using the MRI databases, and testing and following breeding protocols. :)

Unfortunately no one can know what to expect with their dog over its life which makes owning and loving this breed difficult, as there are always some worries in the background. The best anyone can do is be very careful in selecting a breeder and choose one who properly MRIs and follows the recommended breeding protocols. But often we already have our cavalier or have a rescue dog and do not know the parents' SM status as the breeder didn't MRI or the breeder isn't even known. In that case, the best we can do is be smart and be aware and informed about SM. :thmbsup:

Surgery is not the only option and many cavaliers live many years and even a full lifespan on medications, but there are no clear answers as to which works best and neurologists each have their own opinion as to what option -- surgery or medications -- is best. Some do push strongly for surgery. Surgery generally halts progression. Medications won't stop progression. But dogs progress at different rates. I have a 9 year old who had symptoms from around 2, who has always been treated with medications. He has a quite good quality of life but even at his age I always wonder if I made the right decision. For now I feel that I did. But these questions sit in the minds of all owners of SM cavaliers I think.

The best resource for information on the condition is Dr Clare Rusbridge's web materials: http://www.veterinary-neurologist.co.uk/Syringomyelia/

She is easily the leading researcher into this condition and has been treating cavaliers with it for over a decade now. She leans towards using medications until they are no longer adequate to manage pain, before considering surgery, but I know there are some dogs where she would suggest surgery as the best approach depending on its symptoms, age and MRI result. I like her more conservative approach but other people might be more comfortable with a more aggressive approach towards going right away to surgery.

Unfortunately there are no definitive answers. But there is research, including by Dr Rusbridge, that suggests surgery gives a bit better longer term outcome for more dogs than medications, but the study sample was small and also relied on owner opinions which can be very subjective. That could work either way -- it could be that people using medications report that they see less pain than the dog would actually be experiencing -- meaning even more dogs really did better with surgery compared to medications -- or vice versa for people whose dogs had surgery, meaning owners thought their dogs with surgery were doing better than they really were. More dogs were put to sleep that had medications alone, though.

duseskiz
21st January 2013, 11:22 AM
Hello Karlin;

[so the goal must be to reduce the risk of this widespread breed problem, which breeders can do by working with researchers, using the MRI databases, and testing and following breeding protocols. :)]

I definitely agree with that! Unfortunately, here in Turkey there is no breeding protocols to follow. I suppose you know what it means :( I am afraid number of SM surgeries will raise very soon here. I'd like to do something more but only i can do is telling cavalier owners about SM. this is good but i feel like i made many paranoid people. :(

[The best resource for information on the condition is Dr Clare Rusbridge's web materials: http://www.veterinary-neurologist.co.uk/Syringomyelia/]

Thank you for the link, it is really helpful. I've seen Dr. Clare's videos on youtube several times and it is good to know that i have a contact of her even though i dont know if i could reach her or not :confused: As i said SM is very very new known here and i would not want to rely on just one neurologist.

[Unfortunately there are no definitive answers. But there is research, including by Dr Rusbridge, that suggests surgery gives a bit better longer term outcome for more dogs than medications, but the study sample was small and also relied on owner opinions which can be very subjective. That could work either way -- it could be that people using medications report that they see less pain than the dog would actually be experiencing -- meaning even more dogs really did better with surgery compared to medications -- or vice versa for people whose dogs had surgery, meaning owners thought their dogs with surgery were doing better than they really were. More dogs were put to sleep that had medications alone, though.]

So, individually treatment is necessary as far as i understand but the treatment will be up to the owner. Being aware of making decision whether it is right or wrong is annoying as it could be uncorroborated treatment. God, i wish our little babies could talk to us telling how they feel and i wish if i had to make a desicion i'd do the best i could!

Thank you

Ebru&Duses