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View Full Version : Thistle had several pain episodes this weekend



Soushiruiuma
7th January 2013, 10:20 AM
Since getting Thistle back in November she has not been her usual self, although she hasn't been suffering (outwardly). She would run and play with Guinness but not nearly as much as she used to play, and she has been more distant with me. I was hoping it was just part of readjusting to being back with us after 5 months apart.

Saturday afternoon she sat bolt upright in the middle of napping and just started screaming. That only lasted a few seconds. Then again on Sunday during a nap. She is completely naked while in the house, so no collar or harness to bother her. Last night she had another attack around 1:30 am, this one lasted about 10 minutes, and then she was clearly distraught but not screaming for several hours afterwards. I barely slept at all (she slept about 2-3 hours, and otherwise was so uncomfortable that she was pacing around and barking at things.

I thought to get a video, so I've uploaded it to YouTube. http://www.youtube.com/watch?v=OdV1bjzDCfE
This was the 1:30 fit, the video is only of part of her panicking.

I have contacted a vet here about getting immediate attention for her, but otherwise is there anything I can do to make her more comfortable?

From the vet I asked for a cortisone shot to get her comfortable immediately while starting cimitidine or omeprazole.

The other thing I'm thinking it could be is a disc/spinal injury if someone dropped her or she had a fall while she was out of my care for the last 5 months. So we'll probably start with an X-ray, and a work up before going for an MRI.

Even though I always knew this could happen, it's so upsetting to see my little girl so distressed, and it just came up so quickly. She's been reserved, but not showing pain. I feel so terrible for her.

MomObvious
7th January 2013, 12:17 PM
I'm so sorry for her and you too. I know you were without her for a longtime and I'm sure missed her very much. I hope you get this figured out and get Thistle out of pain quickly. Let us know.

Love my Cavaliers
7th January 2013, 01:36 PM
The video is heartbreaking to watch. My guess would be CM/SM related only because that's not how my Oliver related whenever he's had disc related problems. He just wouldn't move at all. But then again every dog is different. I'm so sorry. I hope you have a good vet. It's so distressing to think that something happened while she was out of your care also. Please let us know what the vet says.

Soushiruiuma
7th January 2013, 01:53 PM
We were able to get an appointment, and I'm really happy with the vet I found online.

After getting kissed hello by Thistle (the appropriate way to greet everyone), and watching her walk around happily, she said Thistle seemed perfectly normal. Fortunately I had the video. She gave her a thorough once over for skin irritations etc. Proprioception test (Thistle failed to fix her left side- right side was normal). She felt around, watched Thistle walk some more. She gave her a cortisone shot, which sent Thistle screaming in pain (it's for the best though), and referred us to a neurologist.

The vet has seen syringomyelia before, but said Thistle seems very mild compared to the ones she's seen. She definitely agreed Thistle was in a lot of pain and that should be addressed immediately, and that the pain seems to be neurological.

No pills for now, the shot should keep her comfortable for a while, and hopefully we will be meeting with the neurologist later this week.

We're home now and Thistle's resting, This is the calmest her breathing has been since I started noticing her symptoms.

Soushiruiuma
7th January 2013, 01:58 PM
And LoveMyCavs, thanks for the advice. I don't know how disc pain would present differently from syringomyelia, so it's nice to hear from someone with experience.

I am suspecting SM/CM as well, the scratching, trying to run away from the pain...she's really a classic presentation of symptoms.

I'm hoping we're catching this early. Although I don't know how anyone could ignore something so obviously distressing until the disease is more advanced.

Karlin
7th January 2013, 02:37 PM
Oh no; I am so sorry to hear this. You are doing all the right things -- look for some immediate relief (I'd probably ask for low dose steroids and/or some other actual painkiller like tramadol, but your vet may well make that suggestions for the level of pain -- the pain, whatever the cause, is what needs to be addressed); then try to figure out the source by starting with an xray. That might reveal disk problems, but often an MRI is stil needed for a definite disk diagnosis.

I really hope you can quickly get the pain under control, and then you will be able to move forward with far less of the immediate stress of having a painful dog. :( The distress of that definitely makes the situation so much more stressful.

Sydneys Mom
7th January 2013, 03:57 PM
Sorry to hear that Thistle is having pain. It does sound like you are taking all the right steps to figure this out. Hopefully, you can get this under control quickly.

Soushiruiuma
7th January 2013, 04:01 PM
I have sent the vet a link to Clare Rusbridge's website, and a second link specifically to the the treatment algorithm. Being from the US, I have been conditioned to never ask for pain killers (seriously, I shattered my arm a few years ago, and wouldn't ask for them from the ER doctor for fear of "looking like a druggie"- my brother is a drug addict and will break his hand just to get the painkillers. This was a monthly occurrence for a while).

Europeans don't seem to have that stigma, especially not the low doses a small dog like Thistle would be prescribed, but vets in the US are still only now transitioning to treating pain. I'm to call tomorrow with an update, and at that point I can ask for Tramadol (or something else, not all the drugs are the same here- no Benadryl, for one thing).

It will be essential to keep something in the house for when she's having a hard day though.

Margaret C
7th January 2013, 04:36 PM
That video is very distressing to watch. Thistle was in a lot of pain.

I have a Japanese Chin with disk problems and I have also had few SM cavaliers. It looked very like SM pain to me.

Soushiruiuma
7th January 2013, 05:35 PM
That video is very distressing to watch. Thistle was in a lot of pain.

I have a Japanese Chin with disk problems and I have also had few SM cavaliers. It looked very like SM pain to me.

This was the first time (this weekend, the 3 rd and worst episode was filmed) she's never done this at all, and for her to be so painful was really unexpected. I was afraid to touch her for fear of making it worse.

She tried to play it off at the vet giving kisses and prancing around, so it was very important that I had the video.

Another question, her proprioception was off on the left side (she also is scratching the left side in the video), her front limb was much worse than the hind. But her pupil dilation is normal in both eyes. Is that typical?

At first blush it seemed odd, but if you think about a syrinx (or even CM) would only affect structures lower than the level of the lesion (similar to paraplegic/quadriplegic injuries). Since the optic and oculomotor nerves arise from the mid-brain they would not be affected. So theoretically only structures from brainstem/cerebellum and back should be affected by CM/SM.

sunshinekisses
7th January 2013, 05:52 PM
Oh gosh, that is heart breaking. I actually had to go to the Vet after hours last week with my old boy due to him crying in pain, so I know how terrible it is to hear them cry. The vet thought my dog was having back pain and so far the meds have worked but I am going to follow up with a neuro. Listening to my old dog for only 30 minutes, I can't imagine having to listen to a dog longer than that. I just don't have the heart. I hope they can find some relief for your girl.

Just curious but why didn't the vet give you pain medication?

Soushiruiuma
7th January 2013, 06:36 PM
Oh gosh, that is heart breaking. I actually had to go to the Vet after hours last week with my old boy due to him crying in pain, so I know how terrible it is to hear them cry. The vet thought my dog was having back pain and so far the meds have worked but I am going to follow up with a neuro. Listening to my old dog for only 30 minutes, I can't imagine having to listen to a dog longer than that. I just don't have the heart. I hope they can find some relief for your girl.

Just curious but why didn't the vet give you pain medication?

She didn't give a reason. I should be able to get an appointment with the neurologist tomorrow or Wednesday. She was very clear that she wasn't going to spend any time trying to manage Thistle, when it was obvious she should be handled by a specialist.

The neurologist she usually recommends is on vacation until Feb., so she sent me to another one, rather than wait.

Thistle was only screaming for about 10 minutes, not several hours. She was restless, panting, and obviously uncomfortable all night though.

I only have a bike as transportation here, so an emergency vet visit is quite a hardship. I should know where one is though, I can always call a taxi if need be.

The vet today is 2 communes away, it took me 1.5 hours to bike home from work, get to the metro and get to the right commune, and walk to the clinic. If Thistle was in a state to walk herself it would have been faster, but I carried her in her carrier the whole way.

I have already purchased a stroller, so future trips should be less taxing on me. I'm very petite, so carrying the extra 20 lbs that is dog + carrier makes a significant difference in my speed.

ByFloSin
7th January 2013, 07:06 PM
I have just watched this video three times through and I am sorry to say that it does look to me as though Thistle is showing symptoms of SM. I only have experience of Rebel suffering from this disease, but the scratching is identical to his, as is the restlessness and trying to find a pain free position. The noises aren't quite the same as Rebel has made when in extreme pain but of course every dog is different and every dog's collection of symptoms is too. Rebel too lost the ability to walk until he had been started on medication for a few days, then it was a very different story.

I am so glad that you have got yourself a stroller to make transporting a sick dog easier. I am petite too, also without transport, so I bless the day somebody at a dog show suggested I purchase the stroller for my epileptic dog. My CC/DE girl also uses it to avoid walking on hard ground, which has eliminated all the infected pads and nail beds she had to cope with before.

I do hope you get definite answers from the neurologist tomorrow, although you may have to wait a while for the MRI scan to be interpreted. The neurologist is likely to prescribe suitable pain relief whatever the diagnosis.

Sending gentle hugs for you and Thistle while I spin the Tibetan Prayer Wheel as I write.

sunshinekisses
7th January 2013, 09:02 PM
Good luck with your neurologist visit! I hope everything works out okay.

Emkaybee
7th January 2013, 10:28 PM
I'm so sorry to hear your.ittle one is having pain. I don't think I could personally bear that. :(

You might want to start tracking the barometric pressure for your area. I gather that can have a big effect on dogs with syrinxes, and people on here have been able to predict somewhat when their dog might have a pain episode.

Kate H
7th January 2013, 10:29 PM
Soushiruiuma wrote: 'Since the optic and oculomotor nerves arise from the mid-brain they would not be affected.' Unfortunately it doesn't work like that, because the CM on its own blocks the flow of CSF round the brain and causes it to back up in the ventricles at the front of the skull. This can cause painful headaches and eye problems such as light phobia (which so far Thistle doesn't seem to have - one thing to be thankful for!), entirely independent of the damage lower down being done by the syrinx. Hope your visit to the neurologist sheds a lot of light and gets the pain under control.

Kate, Oliver and Aled

MomObvious
8th January 2013, 02:24 AM
Alright step one she is out of pain for now. Thank goodness, I always think getting the issue on video is helpful. I am also glad you like the vet and it seams both you and the vet is doing everything possible for Thistle. I must admit tho I did not watch the video, I just would cry and I have only seen a few pain episodes and I can't be of any help so tho you were so smart to take the video I just can't watch it.

Soushiruiuma
8th January 2013, 10:04 AM
UPDATE: We made it through the night, and everyone got to sleep. Thistle was still uncomfortable, and would get up and move around periodically, but only scratched a teeny bit (one or two kicks, occurring about 6 times night). She came over an snuggled quite a bit which was really nice.

She liked to be petted on the right side (the normal side), but would tense up if I touched her left side. She still has a long way to go before she's comfortable. It would have been nice to be able to give a her a dose of tramadol or something to get her pain-free. But it was an improvement nonetheless.

Our neurologist appointment is at 4 pm today.

She's also kind of smelly, but I won't bathe her till she's comfortable.

MomObvious
8th January 2013, 11:13 AM
I don't think the neurologist is going to mind that she is smelly, cute out weights smelly every time. I'm so glad you can get her in the see a neurologist so quickly, it still may be after a few tests and the dreaded MRI before you know exactly what is going on but I'm sure getting her out if pain as soon as possible will be a top priority. She is so lucky to have a Mommy whose so on top of her care.

Karlin
8th January 2013, 01:38 PM
I'm so glad there was an improvement last night -- you both needed the rest I am sure! We'll all be thinking of you at 4pm -- you're probably en route right now. No matter the result, I think it is always a relief to know what is going on. You'll also be able to get her on to a pain management programme and then consider what steps will be next -- but she'll be so much more comfortable.

Let us know how the appointment goes. :flwr: Fingers crossed for you.

Love my Cavaliers
8th January 2013, 02:24 PM
Anxiously awaiting word of Thistle. I keep thinking of her heartbreaking screams in the video and hoping that the neurologist will give her some pain relief. Within 30 seconds of Riley's appt, her neuro had diagnosed her with SM, but still confirmed it with an MRI so he could see the extent of the damage. Like Karlin said, it's better to know what you're up against.

Soushiruiuma
8th January 2013, 05:24 PM
UPDATE: saw the neurologist today. So before he saw her (she was in the carrier), we sat and talked. He basically said cavaliers have this disease, and it sounds like that. And I was like, yep.

So he did a work up on her. He said several of her motions were abnormal (not normal for a regular dog, or an SM dog). He said disk disease is almost certainly out of the question, those dogs are exactly as LoveMyCavs described, and Thistle is moving, and importantly not restricting movement in her neck. And basically, he suspects SM, but the MRI will reveal the answer.

The person who runs their MRI is out of town until tomorrow, so he'll book an appointment once they are back, aiming for January 17.

Soushiruiuma
8th January 2013, 05:31 PM
In the mean time, Thistle is really doing well, she's happy and cuddly, stealing and hiding Guinness' toys, and begging for cookies.

She does seem to be pretty sleepy, but that's not so bad.

I wonder if I dare to bathe her tomorrow. She likes to sleep by my head, so she usually is the one who gets noticed for being dirty and smelly.

Sydneys Mom
8th January 2013, 05:40 PM
Glad you were able to see the neuro so quickly. It's scary how her symptoms must came on suddenly. Lucky Thistle who has a Mom who is on top of the problems cavaliers are burdened with. Did you get any pain medications to help until the MRI can confirm diagnosis?

ByFloSin
8th January 2013, 10:37 PM
Glad you were able to see the neuro so quickly. It's scary how her symptoms must came on suddenly. Lucky Thistle who has a Mom who is on top of the problems cavaliers are burdened with. Did you get any pain medications to help until the MRI can confirm diagnosis?

Jut what I was going to ask. Her pain levels may be quite low at the moment but who's to say when they will go back up again. I will be thinking of you, and Thistle too of course, on the 17th. Let us know when you know please.

Karlin
9th January 2013, 12:07 AM
Don't worry about short term steroids -- it's what will help her most swiftly and a treatment regime can be sorted out after. It takes months to years of prednisone use for it to become a possible risk, though there can be some frustrating side effects like appetite increase right away. But it should give her very fast relief, faster than anything else.

Soushiruiuma
9th January 2013, 12:16 AM
Until the MRI she being managed with prednisone (we have pills now). I asked for painkillers, but the neurologist said tramadol would knock her out (better sleeping than screaming is my feeling, but apparently I'm alone in that sentiment), but after the MRI I will be insisting on something else, steroids are not something I will put her on long-term when other options are available.

I'm still learning to navigate the differences between the US and Belgium. I don't take any drugs regularly and I'm pretty healthy so this trip for Thistle was my first pharmacist interaction. It seems the vets don't stock their own pills, so I'm not sure the human pharmacy would have something appropriate for Thistle's size as part of a normal stock. I asked for tramadol (I thought that's what I remembered Karlin recommending).

I actually work in the pharmacology and drug delivery department at my university so I will get the inside scoop on pharmacies in Belgium and what doses of what painkillers I can expect a pharmacy to stock, so I can try to find something I can ask for by name that would be appropriate for her.

My work recently banned all printing for personal reasons, so I'll have to print the treatment algorithm over a weekend.

I really do need at least a few pills of something on hand to give her in an emergency. Or Guinness.

My neurologist is not known for his bedside manner (the vet described him as unpredictable, and not very friendly- the neurologist she usually refers to is out of town till February). But we talked about parvovirus and HIV (and SM), so I think he and I will get along. He's an academic, which is basically the only kind of person I know how to interact with anymore.

MomObvious
9th January 2013, 11:14 AM
My son sees a specialist regularly who people generally do not like. His bedside manner is not so friendly and he's just a "different" type of person. However, he is amazing at knowing his profession and I trust him 100% in treating my son.


I'm glad she is feeling better and you are on track to get her squared away so quickly. Hopefully, you can get her on a medication system and have her as pain free as possible soon.

Emkaybee
9th January 2013, 07:11 PM
Very glad to hear that she's got some medication and can wait till the MRI is done. I also have a vet whose bedside manner isn't swell--and she has a very loud voice. My daughter dislikes her, but I keep taking Tess to her because she is very knowledgable about Cavaliers, and about heart disease in dogs. I figure I don't have to have dinner with her! But I do trust her when she educates me about Tess and what is going on with her heart.

Soushiruiuma
9th January 2013, 09:10 PM
Soushiruiuma wrote: 'Since the optic and oculomotor nerves arise from the mid-brain they would not be affected.' Unfortunately it doesn't work like that, because the CM on its own blocks the flow of CSF round the brain and causes it to back up in the ventricles at the front of the skull. This can cause painful headaches and eye problems such as light phobia (which so far Thistle doesn't seem to have - one thing to be thankful for!), entirely independent of the damage lower down being done by the syrinx. Hope your visit to the neurologist sheds a lot of light and gets the pain under control.

Kate, Oliver and Aled

That's a very good point, thank you. Although the brain and spinal cords structures are static, the CSF is dynamic, and problems anywhere will cause problems throughout.

Soushiruiuma
9th January 2013, 09:13 PM
Very glad to hear that she's got some medication and can wait till the MRI is done. I also have a vet whose bedside manner isn't swell--and she has a very loud voice. My daughter dislikes her, but I keep taking Tess to her because she is very knowledgable about Cavaliers, and about heart disease in dogs. I figure I don't have to have dinner with her! But I do trust her when she educates me about Tess and what is going on with her heart.

I don't know if I could deal with loud, I'm a very quiet person, and I like other quiet people. This guy is just different, really the only description I have is that he's an academic. I was told he would barely speak to me. When I said I had a PhD in neuroscience he just got very chatty, about Thistle, about the pictures in his office, what was my dissertation on, etc.

Karlin
9th January 2013, 10:15 PM
Sounds like you'll get along fine with him. :)

Tramadol is prescription only over here -- probably the same in Belgium but different countries have different regimes. How is she doing today?

Soushiruiuma
9th January 2013, 10:36 PM
Sounds like you'll get along fine with him. :)

Tramadol is prescription only over here -- probably the same in Belgium but different countries have different regimes. How is she doing today?

She sleeps a lot. If she isn't sleeping she's obviously not happy. She barely scrtaches, but she's barking at everything. She's getting 6 mg SID of the Medro (methyl-prednisilone), I'm hoping it will start kind of building up in her system once we're a few days in. I don't know if I should wait and see, or if I should call and try to get something else added in. Thistle used to be the happiest puppy in the whole world, nothing could stop her. It's really hard to see her listless.

Soushiruiuma
10th January 2013, 07:23 AM
Just got the call, Thistle's MRI is on Tuesday the 15th. We need to be at the Dr.'s office no later than 6:45 am. I'm definitely renting a car, forget walking.

I ended up giving her an extra 3 mg of prednisone last night (2mg at 1 am, and 1 mg at 5 am). At 1 am she was barking, and panting. At 5 am she was scratching so much it was difficult for her to potty (Guinness woke me up with the request). The prednisone is given in the morning, and it's obviously not carrying her 24 hours. I'm thinking I may move her normal dose back to later in the day, but I will have to wait till the weekend when I can keep an eye on her pain levels.

At least the MRI is soon.

ByFloSin
10th January 2013, 09:18 AM
Glad to hear that you have the date for the MRI which is not too long for you to have to wait, although long enough when a dog is suffering like this.

I only have experience of the symptoms of SM with the one dog, but this limited experience does tell me that you are learning the important lesson that I had to try to get right, which is of course to tailor the treatment to the symptoms the dog is having, because what works for one may not work for another, or may vary without any apparent reason. Well done you for staying with it and for doing what was needed to get Thistle comfortable again.

Thistle is a very lucky dog to have you. Remember we are all here for you as and when you need us.

Soushiruiuma
11th January 2013, 05:11 AM
Argh! This is so frustrating. I just gave her another 1 mg, but now I think she didn't need it.

She was scratching, on both sides, obviously in discomfort but it just wasn't the same- both sides, strong contact, but not that super distressed scratching. I haven't been petting her much I'm so afraid of hurting her. Now I notice her abdomen is hard. I think she has gas pain.

I'm not saying she doesn't have something major going on, just that maybe these 5 am ones are from other pain. A tummy massage seems to have put her at ease for now

Is this from the steroid? Or something in her diet? Can I add a probiotic or something to help keep gas from being a secondary issue?

ByFloSin
11th January 2013, 08:25 AM
Personally I would 'phone the vet before adding anything to Thistle's medications for possible problems with stomach gas. Colic can be such a difficult and dangerous thing to deal with I would never try to deal with it on my own. It may of course be a reaction to the medicines she is already receiving, a food issue or something completely independent; only a vet can be sure.

Karlin
11th January 2013, 11:29 AM
Try a bit of yoghurt with the steroid perhaps. A lot of us humans who take preds will either take with a stomach protector like cimetidine, omeprazole etc abpout 30 min before taking it -- or take some yoghurt. I use those probiotic drinks. Preds can upset the stomach. But night scratching is very common with SM.

Also VERY important to discuss splitting preds and giving at later times -- it isn't like a pain medication; it is replacing her cortisol which naturally is released by the body in the morning and hence is usually given in the morning. You cannot 'top it up' and giving at other hours can cause her to remain awake all night and cause sleeps disruptions. It also isn;t something where you should ever raise or lower the dose arbitrarily. It needs to be managed carefully. For some people and probably dogs, preds do not last the full 24 hours but it does build up and generally improve the situation. For some, it may be better to split the dose but never to give in the middle of the night etc and splitting needs to be discussed with a vet. I would really be pushing to get her on gabapentin asap if there's a good chance this is SM as that is better at relieving the scratching. You could likely get cimetidine or omeprazole over the counter and follow Clare's algorithm for giving that -- which also might make a big difference (or may not). Ideally I'd confirm doing that with the neuro's office or with your vet. Clare's algorithm is very well established as a treatment procedure.

Karlin
11th January 2013, 11:36 AM
Rereading your posts I think her night wakefulness and barking is probably DUE to the prednisone as her body adjusts to it -- night wakefulness (feeling wired and hyper) is a very common human side effect at first and/or at higher doses. Adding more preds in the middle of the night will just spike this higher. The earlier in the am you can give her preds tends to be better -- eg at 6-9 am and not 10-12 am. And as far as possible always around the same time. You want it to mirror as much as possible her natural cycle. It sounds like she is restless more than in pain in the middle of the night?

Soushiruiuma
11th January 2013, 01:21 PM
I think it's pain. Her behaviour will usually start with changing positions, she'll move from one area of the bed to another, with lots of sighing. Then she'll go on the floor and lay down in various places, with more sighing. Then she'll maybe start growling as she's laying somewhere. Then growling and barking. But she's not really "wired".

If she was wired I'd expect her to do something like try to wrestle with Guinness. But she just seems more like she can't find anyway to get away from discomfort.

I'll phone the vet about possibly adding a CSF reducer.

Karlin
11th January 2013, 02:22 PM
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). :thmbsup: 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.

Soushiruiuma
11th January 2013, 10:30 PM
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.

Soushiruiuma
15th January 2013, 07:47 AM
Well, the neurologist just texted. "there is indeed a huge syrinx"

IŽll post again when I have more details.

Love my Cavaliers
15th January 2013, 01:38 PM
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.

Sabby
15th January 2013, 02:23 PM
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.

anniemac
15th January 2013, 02:50 PM
Well, the neurologist just texted. "there is indeed a huge syrinx"

IŽll post again when I have more details.

I'm so sorry to read this. Thinking of you

Karlin
15th January 2013, 02:58 PM
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.

Soushiruiuma
15th January 2013, 03:12 PM
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).

Sydneys Mom
15th January 2013, 03:13 PM
As the others have said, I too am sorry you have received this diagnosis.

Margaret C
15th January 2013, 04:59 PM
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.

Soushiruiuma
15th January 2013, 05:47 PM
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.

ByFloSin
15th January 2013, 05:54 PM
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.

Soushiruiuma
15th January 2013, 06:24 PM
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. http://i.imgur.com/Lwppd.jpg

Karlin
15th January 2013, 06:57 PM
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.

MomObvious
16th January 2013, 05:50 PM
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.

Karlin
16th January 2013, 06:09 PM
PS Love the stroller! :)

Soushiruiuma
16th January 2013, 06:30 PM
Here's the MRI image. Her syrinx is enormous.

http://i.imgur.com/QZsuI.jpg

Karlin
16th January 2013, 08:01 PM
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:

Soushiruiuma
16th January 2013, 08:36 PM
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.

http://i.imgur.com/GMRZj.jpg

anniemac
16th January 2013, 10:59 PM
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.

MomObvious
17th January 2013, 01:13 AM
I understand this is a complicated, painful and confusing diagnose. I'm turning to the brighter side of the situation when I said "this is not a death sentence and is treatable" and I really do think that is true. Its not like there are no options, you are not being told "your dog is in a lot of pain and there is nothing to be done" (that is in my mind a death sentence) Again there are no crystal balls and not one living thing is born on this earth with an expiration date. Thank goodness for all the wonderful information posted in CT. Personally, since not having any information about Fletcher's parents I brace for the day I face these medical conditions. Its not easy I'm sure but again just another reason to be thankful for CT and the support.