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Thistle had several pain episodes this weekend

I meant that if she is being kept awake by prednisone, it will keep her awake and reacting to discomfort rather than settling and sleeping (especially if she started doing this after being on preds, which would normally reduce discomfort). (y) Should have explained that better. But could be the coverage doesn't yet address the pain. It does build up over time though -- for my condition for example taking preds is actually the main diagnosis as it is the only thing the pain responds to, and very quickly but 'quickly' means over up to three days.
 
OK. now I see what you're saying. I've been giving her the 6 mg before I head to work in the morning, between 8-8:30. But then around 1-2 am she starts to be uncomfortable. Unfortunately, I'm only getting about an hour sleep before she wakes me up, and I would really like to sleep through a night. Giving her a boost of the prednisone seems to settle her back down.

I don't know why Guinness keeps waking me up at 5 am, he isn't even getting medication. But Thistle again can't settle. It'll be a relief to get her stabilized, and happy. I don't want her to be sleeping all the time (just at when I'm sleeping, it would be nice), but it'd be so nice to have her personality back.
 
Ah, I'm so sorry, even though we all knew that's what was going on with her it's still hard to have it confirmed. At least now you do have a positive diagnosis (and know that nothing happened while she was out of your care) and can move on and give her the best care you can. Will await more details.
 
Just been reading all of your posts. I am so sorry that yet another Cavalier owner has to go through this. At least it has been confirmed that it is SM. I don't know how things work in Belgium but it be great if you could get her onto Gabapentin (should be avaiable over there) and Zitac. Every dog is different. All 3 of mine have SM or symtomatic CM. One is on Lyrica & Zitac the other is on 3x100mg gabapentin & Zitac and the other one is on 4x 100 mg gabapentin & Zitac.
 
Oh no, so sorry that you have had this result -- but there is strangely always some relief at finally knowing as you can then go forward with proper information and take the steps to make her more comfortable.

In your shoes, I would push gently but firmly to relegate steroids to save for the 'nothing else is working' category and instead start to work from Clare's protocol to bring in a CSF inhibitor and probably gabapentin. You can see from so many cavaliers here over the years, that gabapentin is most likely to bring some immediate relief once the dosages are right. :flwr: Let us know when you have more information. We are all thinking of you.
 
Oh no, so sorry that you have had this result -- but there is strangely always some relief at finally knowing as you can then go forward with proper information and take the steps to make her more comfortable.

In your shoes, I would push gently but firmly to relegate steroids to save for the 'nothing else is working' category and instead start to work from Clare's protocol to bring in a CSF inhibitor and probably gabapentin. You can see from so many cavaliers here over the years, that gabapentin is most likely to bring some immediate relief once the dosages are right. :flwr: Let us know when you have more information. We are all thinking of you.

This is exactly my plan. I can't leave work for a few more minutes, and unfortunately couldn't go with her to the MRI. I texted the neurologist to ask if he was familiar with Clare Rusbridge's algorithm, he said he knew her well, but wasn't aware of the algorithm so would download that.

Given Thistle's bloating and vomiting I want to get her off the steroids unless there are no other options (and right now we have several options that haven't been tried).
 
However much we know the likely answer it is always a shock to have SM confirmed.

Thank goodness Thistle has got such a well informed owner. I do hope you can get her comfortable soon.
 
Ok, I picked Thistle up, and talked to the neurologist. She has a single large syrinx (pictures with size will be available later this week), it is on the left side (all her symptoms are on the left side so I was afraid we'd have an asymmetrical syrinx as well. She has enlarged ventricles, CM, medullary kink, and cerebellar crowding, but he did not see herniation. He said the images were very high quality. And her ears were clear, so no PSOM.

My neurologist clearly doesn't deal with cavaliers often, he is not at all convinced that Clare's recommendations will do anything, but he prescribed them and we will be using those. Thistle has omeprazole 10 mg SID, gabapentin 100 mg BID, and rimadyl 1/2 tablet SID. ANd we'll be tapering her off the prednisone starting tomorrow.

I'm so glad I have this forum, who knows how long it would have taken to get her diagnosed and onto these meds (instead of prednisone). Thanks to everyone! I'm sure I'll be catching up on reading this section more thoroughly soon.

He also warned that the meds are very expensive, but I'm from America, and compared to American healthcare, nothing is expensive. It was €300 for the scan, €9 for one month of omeprazole, €12 for 90 tablets of 100 mg gabapentin, and €7 for a bottle of rimadyl.
 
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So glad that you now have answers. Poor Thistle being in so much pain for so long. However, now she's had the MRI scan that pain can be relieved so that she has a more comfortable life. There are several medicines available that can be prescribed and combined into treatments as the matrix shows. What suits one may not suit another, so please be guided by your neurologist, who will do everything necessary to establish a suitable regime for Thistle.

Keep in touch please and let us know how she gets on.
 
So glad that you now have answers. Poor Thistle being in so much pain for so long. However, now she's had the MRI scan that pain can be relieved so that she has a more comfortable life. There are several medicines available that can be prescribed and combined into treatments as the matrix shows. What suits one may not suit another, so please be guided by your neurologist, who will do everything necessary to establish a suitable regime for Thistle.

Keep in touch please and let us know how she gets on.

I feel terrible that she's obviously been in pain so long, but until recently you'd never have guessed. She was always the unstoppable one, running, jumping, climbing, wanted to be chased at the dog park, initiated wrestling, stealing toys/chews...

And now just after her second birthday she's in such pain, and it turns out she always has been suffering and just never let it slow her down.

Here's a picture of her enjoying her new stroller yesterday, she loved the mesh window at the front.
Lwppd.jpg
 
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Don't be too hard on yourself -- she may well actually have not had that much pain or discomfort until the syrinx reached the size it is now or you'd have likely seen symptoms on and off. Many human sufferers have very sudden onset of pain from Chiari or SM, while others would have some mild or steadily increasing discomfort then more serious pain. I am sure it is similar for dogs. The only wrong thing we as owners can do is to NOT step up and work to make our friends more comfortable once we see symptoms, and to fail to recognise when they have had enough, which hopefully will be at the end of a long and full life for each of our dogs.

You took action as soon as you saw these signs and have done just what every responsible and loving owner should do. :flwr: The next step will be to find what mix of treatment gets her to where she is happy and comfortable as can be. Fortunately for us all, thanks to many tireless, caring researchers and dedicated cavalier owners, so much more is known now about treatment options compared to years past, and many of us have dogs that have lived for years with this condition. My Leo was diagnosed at just over one, started showing outward symptoms at just after 2, has scanned first with a medium then a large but relatively short syrinx, 4 years apart. He just turned 9 a few months back and is a very active little man. It may be that his MVD becomes the larger issue eventually -- I suspect that will be the case -- but we just take each day as it comes. They are all different and individual but there are many, many dogs who with the right management, have a decent quality of life for well into a normal lifespan. Hang in there and do just as you are doing -- that's been exactly right so far.

As Margaret says the diagnosis always comes as a jarring shock no matter how much we might expect it, but I know you will keep moving forward.
 
I agree with Karlin don't feel guilty you got her in to see first a vet then the specialist so quickly...your a pretty great doggie Mommy. You acted when you knew there was a reason to....perfect example last week my husband was complaining about tummy pain. Not normal yucky tummy but just like cramps (honestly I joked and called them menstrual hahahaaaa) well by Thursday is woke up in serious pain, I was thinking UTI, bladder infection so I sent him to our GP they told him to go straight to the ER because it was neither. Turns out it was a pretty bad case of diverticulitis, but I would not have recommended he go to the ER for the "menstrual" cramps...........sometimes you cannot act until you know. Gosh only if I have a crystal ball or something!!!!

Also you know the science stuff, this is not a death sentence and is treatable. Awful as it is I'm sure you will see to it her condition is managed and well controlled.
 
this is not a death sentence and is treatable

To be honest, neither of these are completely true, according to the science. Sometimes SM is a death sentence. It often will take years off a dog's life. It also is not always effectively treatable. Sometimes treatment only gives weeks, months or a few extra years, and either option (surgery of medications) is completely uncertain in result and effectiveness, for the entire lifespan of the dog.

This is why a diagnosis is always a shock, and knowing your dog has this condition is a serious blow to any cavalier owner. An owner always lives with that uncertainty and the challenge of managing a condition that almost always progresses if using medications alone, and there are only a limited number of similar medications to choose from (hence the 'cocktail' approach as usually there are combinations that work better for a given dog). Even making the choice of treatment is difficult and most of us regularly weigh up if we have made the right choice. There are no clear choices.

At the same time, many dogs live many years, even a full lifespan, with SM. Dogs can be mildly or seriously affected. Occasionally it doesn't really seem to progress or does so slowly. I can say to anyone with a diagnosis that often predictions on a given dog are wrong, for better or for worse.

I do not think it right for people to start to consider SM as a manageable condition with lots of treatment options and that is why I do not want to falsely airbrush the condition as it isn't fair to the reality for owners. In some dogs, SM can indeed be managed well. In others, there are regular and frustrating ups and downs. For an unfortunate some, it's a difficult, hard to witness battle.

I know Soushiruiuma is aware of all of this and know she also is aware of the many dogs here with SM and how they and their owners have managed. There are good stories and bad. We'll all be hoping this is a case that can be managed, and medications can give very quick relief, but do not halt progression.

On syrinx size -- Soushiruiuma, there are several studies that suggest length isn't as much an issue as width and position. Neurologists sometimes see dogs with mild symptoms and syrinxes running the length of the spinal cord. Of course you are seeing several symptoms at the moment but don't lose heart at length alone. :flwr:
 
To be honest, neither of these are completely true, according to the science. Sometimes SM is a death sentence. It often will take years off a dog's life. It also is not always effectively treatable. Sometimes treatment only gives weeks, months or a few extra years, and either option (surgery of medications) is completely uncertain in result and effectiveness, for the entire lifespan of the dog.

This is why a diagnosis is always a shock, and knowing your dog has this condition is a serious blow to any cavalier owner. An owner always lives with that uncertainty and the challenge of managing a condition that almost always progresses if using medications alone, and there are only a limited number of similar medications to choose from (hence the 'cocktail' approach as usually there are combinations that work better for a given dog). Even making the choice of treatment is difficult and most of us regularly weigh up if we have made the right choice. There are no clear choices.

At the same time, many dogs live many years, even a full lifespan, with SM. Dogs can be mildly or seriously affected. Occasionally it doesn't really seem to progress or does so slowly. I can say to anyone with a diagnosis that often predictions on a given dog are wrong, for better or for worse.

I do not think it right for people to start to consider SM as a manageable condition with lots of treatment options and that is why I do not want to falsely airbrush the condition as it isn't fair to the reality for owners. In some dogs, SM can indeed be managed well. In others, there are regular and frustrating ups and downs. For an unfortunate some, it's a difficult, hard to witness battle.

I know Soushiruiuma is aware of all of this and know she also is aware of the many dogs here with SM and how they and their owners have managed. There are good stories and bad. We'll all be hoping this is a case that can be managed, and medications can give very quick relief, but do not halt progression.

On syrinx size -- Soushiruiuma, there are several studies that suggest length isn't as much an issue as width and position. Neurologists sometimes see dogs with mild symptoms and syrinxes running the length of the spinal cord. Of course you are seeing several symptoms at the moment but don't lose heart at length alone. :flwr:

The width and position are a little vague to me. The transverse image is here, it's T1, so the syrinx is in black rather than white. You can see that it is indeed very asymmetric, extending towards around 4 or 5 o'clock ish (yes, I navigate every round object as though it is a clock face). I don't have any measurement on the width. But it does seem to extend pretty far.

My vet recommended against surgery (because it's not tremendously successful), is there any value in me paying for a second opinion from a UK vet, or the netherlands I believe has made some major SM vets (?)? Given how young she is I am wondering about the prognosis, with vs. without surgery. It looks to me like her cerebellum is just smashed into her brain (even compared to the MRI images I've seen of SM dogs), and I just don't know what's right for Thistle.

My vet isn't very experienced with SM, but he was willing to follow Clare Rusbridge's treatment algorithm.

And, an off-topic share: Guinness is having some interesting dream at the moment he is just snoring and waving his legs like crazy.

GMRZj.jpg
 
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To be honest, neither of these are completely true, according to the science. Sometimes SM is a death sentence. It often will take years off a dog's life. It also is not always effectively treatable. Sometimes treatment only gives weeks, months or a few extra years, and either option (surgery of medications) is completely uncertain in result and effectiveness, for the entire lifespan of the dog.

This is why a diagnosis is always a shock, and knowing your dog has this condition is a serious blow to any cavalier owner. An owner always lives with that uncertainty and the challenge of managing a condition that almost always progresses if using medications alone, and there are only a limited number of similar medications to choose from (hence the 'cocktail' approach as usually there are combinations that work better for a given dog). Even making the choice of treatment is difficult and most of us regularly weigh up if we have made the right choice. There are no clear choices.

At the same time, many dogs live many years, even a full lifespan, with SM. Dogs can be mildly or seriously affected. Occasionally it doesn't really seem to progress or does so slowly. I can say to anyone with a diagnosis that often predictions on a given dog are wrong, for better or for worse.

I do not think it right for people to start to consider SM as a manageable condition with lots of treatment options and that is why I do not want to falsely airbrush the condition as it isn't fair to the reality for owners. In some dogs, SM can indeed be managed well. In others, there are regular and frustrating ups and downs. For an unfortunate some, it's a difficult, hard to witness battle.

I know Soushiruiuma is aware of all of this and know she also is aware of the many dogs here with SM and how they and their owners have managed. There are good stories and bad. We'll all be hoping this is a case that can be managed, and medications can give very quick relief, but do not halt progression.

On syrinx size -- Soushiruiuma, there are several studies that suggest length isn't as much an issue as width and position. Neurologists sometimes see dogs with mild symptoms and syrinxes running the length of the spinal cord. Of course you are seeing several symptoms at the moment but don't lose heart at length alone. :flwr:

I agree with a lot of what you said. You want to stay positive for people (and there are many that do ok) but I sometimes forget how painful it was when I found out Ella had severe SM.

My first question was "how long" and I remember vividly the neurologist saying he couldn't say it could be 3 months or much longer. I forget the ups and downs because i try to remember the good days now that she is gone. It was very tough for me and I want to give you positive encouragement but I have to say that going through what I personally did with Ella changed me but it also brought us closer together.

Soushiruiuma, I think second opinions may not hurt but I live where there are other neurologists close by. I opted for Ella to have surgery. I can't tell you what to do but I decided because I felt she was progressing fast and I didn't feel I had the time to try and come up with the right medicine combination. Knowing what I do now, I don't know if I would have made the same choice again or not.

What you said, Karlin, about it could take years off a dogs life hit home. Soushiruiuma, I lost Ella due to something other than SM. I can't say Ella would have lived a long life if it had not been for her obstruction which caused her death but I can say I tried as much as I could to make her life as full as possible.

You are a scientist so the advice I give you is no matter what the future holds, try to cherish the good days. I hope that with medicine and treatment you will see a great deal of improvement. I will be thinking of you.
 
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