Have you read the thread started by GemmaMerlin? Merlin had facial paralysis, but this has improved as gabapentin began to get on top of the pain. Poor balance is a very common symptom of CM/SM. My Oliver has it but it doesn't seem to be painful, so I doubt that it is connected to his syrinx, and increased gabapentin doesn't make any difference. My personal (entirely lay and probably wrong!) theory is that balance is controlled by the cerebellum and for more than 6 years for Oliver this has been pushed by the Chiari Malformation and acting as a stopper in the top of the spinal cord, which cannot do it much good. So I wonder if the part that controls the balance has been damaged - but this idea is probably completely wrong! He has had one vestibular episode, but his terrible balance is never accompanied by the signature rapid eye movement, nausea etc. typical of vestibular problems And he has no problems with balance when he's trotting round the park!
I've not had your kind of ups and downs with either of my CM/SM dogs but I have had it with one of my Cavaliers who was in congestive heart failure for 9 months, so I have some idea how stressful it can be for you. But Cavaliers have a great enjoyment of life, even when that life is very limited by illness, and they have great powers of recovery, so I'm afraid the ups and downs with Sammy will probably continue and all you can do is learn to live with it.
Thinking of you both :hug:
Kate, Oliver and Aled
Thank you! This truly has been a roller-coaster week and I'm a bit of an emotional wreck now. But that's really encouraging to hear that another dog's facial paralysis actually improved with gabapentin! I will definitely read about it.
From what I've understood now (I too may be utterly wrong, but I've been reading up like crazy about every word that my vet uttered - it's a control thing - it makes me feel like I'm able to do something), there are two types of vestibular damage. The one people usually refer to as a vestibular episode is a peripheral vestibular attack. It is associated with the inner ear and only the vestibulocochlear nerve in the brain is involved. It is usually relatively harmless.
The other type is a central vestibular attack which is associated with damage at the brainstem and often involves other cranial nerves such as the trigeminal nerve - which is responsible for Sammy's lack of eye reflex. An upward rotational eye movement, which Sammy eventually developed, also indicates a central attack. This has a poorer prognosis because the cause is usually more serious and more damage can be done.
On the other hand, if no more damage is done than this, it should be livable with since the brain can compensate for quite a lot. Sammy's balance has already improved hugely - he is walking fine, his head tilt getting better and both his eyes have now almost completely stopped moving (and I think he can now see through both).
Irritation of the trigeminal nerve can be enormously painful in humans, but is actually controlled also in humans by gabapentin or lyrica amongst other possibilities.
I think there must be other types of balance problems that are not concerned with the vestibulocochlear nerve though! But based on what I've read, Sammy's is.
The literature I found on syringobulbia (and of course I don't know for sure that this is what Sammy has or even if it's possible in dogs) all describes an acute progression in humans. But in humans, acute progression is e.g. 7 years, whereas if Sammy manages even a few more happy months with all his problems, I'll be grateful.
I will ask my vet about talking to a neurologist.
I'm more hopeful now. Last night I was convinced though that I am being selfish in keeping Sammy going through all these problems, since I can't say for sure how much pain he's in. But as you said, maybe I just have to live with these ups and downs now. I do hope I'll have the wits and courage to know though when it's time to stop. I'm sorry to hear you've gone through the same thing with one of yours. I guess everyone does eventually. But I had no idea it could be this painful - I don't know how anyone has strength to get another.
Update: Sammy is doing really well. Yesterday he was running around almost as though nothing had happened. His head is still tilted a bit, his eyelid is still paralyzed, and he's still shaking his head sometimes. But all of those things seem to be improving every day - I could swear I even saw a slight eyelid twitch this morning when testing his reflexes.
I still haven't had the guts to reduce his prednisone. He's on 5mg every other day, and I'm still finding that on the evening when his dose is due he starts to have pain symptoms (despite the gabapentin and now lyrica, which I'm gradually switching him to). But I've ordered Denamarin online and have read some really encouraging reviews for it from people whose dogs had liver disease.
I guess the problem is now that since I don't know for sure what the cause was for all this, I don't know which medication (if not all three or none) is making him better.
I've been considering taking him down to Helsinki for an MRI scan, since that's the only thing I see that would be conclusive. It would be very expensive though - he's not insured and I've already run up a very big bill this week - and I'd have to take a couple of days off work, so I would only do it if I thought it might change his prognosis. The only way I see that happening is if my vet was wrong after all about it being a brain-stem problem and instead he has an inner ear infection and needs antibiotics. But then why would he be getting better...
Anyway, so far so good :)
Edit: Forgot to mention. The weather was getting increasingly freezing last week when Sammy was deteriorating. It has been warming up when Sammy has been improving. So I can't rule air pressure out as a cause either - though that seems a pretty ridiculous connection given how dramatic and sudden the symptoms were.
Don't underestimate the influence of air pressure. Someone wrote on here a few months ago that Clare Rusbridge had seen a Cavalier with CM/SM who was in so much pain and distress that euthanasia was being considered. Saw it again the next day and was amazed at the improvement - and the only factor that had altered was a rapid change in air pressure. We're brewing a huge storm in the UK at the moment and over the next three days the air pressure is going to drop rapidly and then go up again rapidly as the storm moves away, and even my Oliver, whose CM/SM is usually well controlled, was occasionally whimpering with pain this evening. He got his bedtime gabapentin a couple of hours early and that seems to have made him comfortable. He has severely dilated ventricles, like many Cavaliers with CM, and it seems that the pressure this creates within the skull is affected by changes in pressure from outside the skull. Human beings with CM are also affected by changes in air pressure and get migraines.
It really is a pig of a disease, but I'm glad Sammy is improving. It seems normal for it to take several months to get the medication right for a particular dog. An alternative to the long journey to Helsinki might be to talk to Clare Rusbridge on the phone. She has more experience than anyone of treating Cavaliers with CM/SM, and although sending her an MRI scan of Sammy would be the ideal, she is very good at 'long distance' consultations. She will charge you, of course, but it will be nowhere near as expensive as a long trip to Helsinki, an MRI and a couple of days off work. Someone on this forum who lived in France did this a couple of years ago when her young Cavalier was diagnosed and found it really helpful, and Clare then contacted a French neurologist and they worked on a treatment plan together. Another possibility, anyway.
All the best
Kate, Oliver and Aled
This may sound silly, but how do I contact Clare? I've been trying to find out online, but so far it seems that the only way may be through a referral from my vet's office to hers, if that's even possible from Finland.
Sammy has been doing really well. He's almost back to himself. I have him up to 50mg lyrica twice a day now, so this was the first evening I decreased his prednisone to 2.5mg (he usually gets 5mg every other night). I did start noticing symptoms as it approached bed time - scratching, flinching away, and, oddly enough, staring at me. I just don't know that the lyrica is doing anything for him and whether it will do anything for the neurological deficits. So I don't know that I'm doing the right thing reducing his prednisone at all. Then again if his liver is severely damaged (which is very uncertain), perhaps the prednisone has caused the neurological deficits in the first place.
And he's still on furosemide for the murmur and enlarged heart, but I don't know if that is actually a bad idea for the heart and the liver, though it may have actually helped his sm. I am just stumped. When I give him or don't give him a certain medication I don't know if I'm curing him or potentially killing him. Something caused the attack last week and now something is making it drastically better, and I don't know what that something is in either case.
Her website is http://www.fitzpatrickreferrals.co.uk/
Originally Posted by laram
Thanks - I will contact the clinic then first rather than Clare directly.
Sammy is still doing well, despite the lower prednisone dose yesterday. He was squinting a bit this evening and scratching a little, but I'm really hoping that 100mg (2 x 50mg) Lyrica will keep that from going over the edge. He is otherwise full of beans and only his head tilt, a lack of eyelid reflex and very slight in-coordination outside would show that anything has happened. On the vet's advice, I'm decreasing his furosemide from 40mg to 20mg per day now. I think it might be helping his circulation (I actually noticed yesterday that his tongue is now a healthier pink than it used to be). I'm considering adding omeprazole too for the sm.
In case anyone wonders why I am so obsessed with him, this is a (crappy iphone) picture from this evening. Could there be anything sweeter than this tail-wagging little dog? Apart from your own dogs of course! :o
my sammy by llmmc, on Flickr
Ahh he's lovely. So glad he is doing better.
You may find you need to keep him on preds at the same dose but see how it goes. I don't think prednisalone would have cause neurological deficits. You can always go up on the Lyrica (in discussion with your vet of course) -- 50mg 2x is still at the moderate end of the scale I think. I am not sure you'll be able to associate the recent problems with anything having happened or changed, or with meds. Unfortunately with CM/SM some of these things tend to happen over time but they can also recover well and go on.