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Vets that have knowledge on SM in the Solihull area?

James I'm so very sorry to hear that Ziggy is not doing well. He is such a lovely boy, it was a pleasure to meet you all in the summer.

It's very hard when you are fast running out of options, been there too many times :( I know when the time comes, you will make the kindest decision for Ziggy, but I really hope that Stephanie was able to give you some suggestions today and that you can enjoy Christmas together.

Keeping you all in our thoughts x
 
Thinking of you and Ziggy and your family; this is so terribly wrong for you to have to go through this. :( I do hope, as Nicki says, that you have had some potential options to continue to support him and make him as comfortable as you can. It is hard to feel those options are running short. It is little comfort perhaps to say so many others here can share in your distress and frustration, but so many of us do genuinely understand what you are going through and will be holding you and Ziggy in our thoughts and prayers.
 
I am so sorry you are going through this with Ziggy, I do understand how heart wrenching this is. Gentle hugs to Ziggy
 
Hi everyone, thanks all for your kind kind words. Fortunately, we phoned up Stephanie to realise she was away, some other Neurologist named Daniel said we keep up his amiltriptaline to 2 like we planned and up his dosage of gabapentin from 2 in the morning and night to 3 at morning and night. (with just the regular 2 in between) We did this, he did not improve. He started having episodes where his head would tilt and hed walk funny again, where as last year they lasted seconds, these seem to last a bit longer. It was so distressing because he seemed fine one minute, and really bad the next. So with that playing with our minds we were starting to think he wouldnt be around for Christmas, we started to notice a pretty big improvement on the 23rd. He seemed to be a bit more perky and less sad which was great to see and by Christmas Eve, his symptoms that crept back in were starting to become less severe. Even if he does have any symptoms of his disorder now, he doesnt seem as distressed or in as much pain as we have seen him in before.

At this stage, we cant focus on long term anymore. Although thanks to what upping the gabapentin has done (which is rather weird as I was under the impression they didnt do much), we are well aware that at any moment his stomach could stop tolerating the amount of medication he is on, or of corse, his condition could take a turn for the worse at which point there really is no where else to turn. We are very very lucky and very very grateful that one small adjustment to his medication managed to sustain quality of life and happiness.

So today, hes been really good as he was Xmas Eve! His usual happy fussy self and helping us open the presents. Overall, we have been very pleased with the results we have seen over the past 3 days :D . We were gutted to think we wouldnt be able to spend one last Christmas with him but he made it and it was nice to just have him there today, meant so much to us.

Anyway, I hope you have all had a great Christmas! :)
 
Hi James and family - I am sooooooo glad that you had a good Christmas with Ziggy. His head tilting and loss of balance could be vestibular episodes (coming from the vestibular coil in the inner ear, which controls balance), which can also cause vomiting. Not much you can do about them as they usually recover on their own over a few days, but very disconcerting to see. I wonder if Ziggy is one of those dogs who does better on gabapentin spread over four times a day rather than three? I find both my boys do better with a shorter interval between them; Ziggy's increased dose means there is enough gabapentin left in the body to cover the whole day, but the average of lasting 8.5 hours is just that, an average, and some dogs can manage on less often, while others need more often (though not necessarily more in quantity). Might be worth raising it with Stephanie when she returns - perhaps trying 2x4 times a day, which is not giving him less, just tweaking the times.

After a flurry of churchgoing, the boys and I have had a lazy Christmas, eating nice meals at rather odd times, getting up late, and doing very little, which was nice after a couple of weeks of working hard to get a book finished by Christmas (I'm a freelance book editor).

Fingers crossed for all our fragile dogs in 2015 (y)

Kate, Oliver and Aled
 
Hi Kate! Yeah, we're very glad too. Are these episodes painful in anyway? When they start, it sort of makes him jump as if its an intense pain and then he walks all disorientated etc. Hes had around 3 episodes today. Ziggy is definitely one of those does which do well on spread out Gabapentin as hes always at his worse just before his next dose so thats definitely the case. Yeah maybe tinkering with the times that the gabapentins are given at might help, wel look into that.Lazy Christms! Just how it should be!
 
It's good to hear the symptoms are less evident and milder... I hope he stays that way for a good, good while. Clare Rusbridge and some other neurologists I have heard speak on this subject say that often, dogs will gradually adjust to tolerate various symptoms, or perhaps their body adjusts... ot perhaps a syrinx shifts to some degree or they have even been known to burst, relieving some discomfot. It is hard to know. I wouldn't think the head tilt and disorientation part is accompanied by a lot of pain; seems to be more likely that it affects function in that part of the brain. Other symptoms would to me, seem more indicative of pain, often pretty obvious pain.

If you are on gabapentin now, keep in mind Lyrica (pregabalin) which for most dogs seems to bring improvement at any point that gabapentin isn't working that well. It made a major difference for my Leo when he had reached 200mg gabapentin 3x which was about the limit he could do for his size as he was quite small.
 
Hi all. Since the last update, things went fairly well through January.
Very unfortunately though, through February so far, Ziggy has deteriorated extremely quickly and we were quickly beginning to lose control. :( Over the past few weeks, he has been paw licking more and more, he has had episodes of paw licking where it became so intense that he began to cry while chewing. Vestibular episodes seem to be coming back (but his legs seem to be affected by this? They go all weird and such), his eyes are going red on and off.


There has also been 2 extremely bad pain episodes over the past week, they were manic and really scary. The first one he had was yesterday where he began to do his typical face scratching which then progressed to air scratching while running manic around the house looking terrified. He was also feeling really sick as I saw him licking his lips etc. The second episode happened Thursday where he started face scratching and then asked to go outside right after where he ran down the garden clearly in pain and collapsed at the end chewing his leg really really intensely, you could literally see his head shaking while doing it, then for a further 3 minutes we tried to get him walking round the house and his 2 back legs just wouldnt move, and if they would it would only be for a few seconds where he'd collapse in pain and begin chewing. To be quite honest, I don't think I have ever seen him so scared.


Seeing these issues arising again, we rang Stephanie on Thursday and she said she needs to see him tomorrow (Friday) to assess him for a new medication (Frusemide). She did warn us, this might not be an option as he might not be in fit enough health for his kidneys to deal with the medication.
We have also noticed theres a scab where he usually scratches when he has his head scratching episodes and have noticed a scab there, so that gives you an idea of how frantic the scratching can become when it happens.

So, Friday came and we went in to see Stephanie, she gave him an assessment like she did when we first started seeing her and he did well and (weirdly enough!) passed with flying colors! She said that he has developed no significant changes since she last saw him (which probably would have been around this time last year if I recall correctly) which is rather unusual given the circumstances...
She did the leg test where she picks up the paws to see if he can place them back correctly, which he passed with the back left leg but the back right seemed to be a bit more trouble for him although she didnt seem to think that held any significance. Just thought I'd mention that incase that might come of use for something.
When we were talking about his medications, she asked whether or not he was still on his anti sickness tablets so we confirmed that he still was and she was pleased because she said that studies have found to see a small improvement in SM/CM cases where they have this particular anti sickness medication! Again, just thought id mention that incase that might come of any use to anyone reading.

One thing she did want to do before putting him on the medication is take a blood test to assure that there isnt any problems underlying which may be compounding things and to also make sure that his body can take up to the Frusemide she wants to put him on. We will be getting the results on Monday or Tuesday so we'l keep you posted on that! She did warn us however, the medication she suggested will either do a lot, or not very much at all and may not help him. If this case scenario arises, she suggested we put him back on an extremely small dose of steroid but then when we mentioned he started having that colitis on the lowest dose, that was ruled out. She then suggested we put up the gabapentin to 4 tablets every time we give it him seeing as he isnt doped up by any of this (which he isnt, nothing seems to scratch him dopiness wise :eek: ) but she did warn that this might not be too helpful.

We definitely realise we are running a bit short on solutions, we are just making the most of our time with him now (like we've been doing for the past year since hes just completely surpassed our expectations! One things for sure, we had absolutely no expectation that hed be here in 2015 in any way shape or form, yet here we are) and carefully monitoring his condition to be sure he is living a happy life. Which presently, he is. Although if these episodes hes had start to come back and we cant do anything to suppress them, we feel that we will have to start thinking seeing how terrified he was by the last 2.

However (typical Ziggy! :lol: ) he has improved gigantically since Thursday! :D These episodes he was having (although this was only 2 days in a row, but we were worried about them being more consistent seeing as they were so painful and scary for him :( ) completely stopped and he has been extremely comfortable since. When I say extremely comfortable, you can tell he just seems so much more settled and having more peaceful sleeps. On Saturday he asked to come up on the sofa with me and he slept right across my lap for a good hour or so and had a really good sleep in the process which was lovely to see after those episodes.

In light of these developments, we have decided to ring Stephanie when the results come through and ask her if we can start the medication when (or if, it is early days yet) the episodes start consistently again. So safe to say, the past week has been a bit... Tiring to say the least! lol

Anyway, I hope all your packs are doing alright! Il keep you all posted.
 
Wish I could find some words to say to make things better for you and Ziggy, but that isn't being realistic. I am so sorry that Ziggy is experiencing these dreadful pain breakthroughs. I just can't imagine how you manage to cope with them. Rebel had similar leg problems to Ziggy at the very end of his life. In his particular case, especially because he was almost 12 years old, I decided that for him life wasn't worth living any longer and took the appropriate action. For you and Ziggy it is a very different picture.

Rebel's treatment started with Frusemide because he had such a large Syrinx. Hindsight tells me that had he had the full scan it might have shown fluid on the cerebellum putting pressure on the optic nerve too, because he had one eye progressively closing in daylight or strong artificial light long before he was otherwise symptomatic. When I did find out, and showed dated pictures of him to the vet, she started him on Frusemide as a first treatment of choice and it helped him for quite a long time. He stayed on it for the rest of his life, i.e. about 5 years, without apparent ill effects.

I do hope that when the results come through they are all that you and Stephanie hope for and that the Frusemide can be started and that it proves as helpful for Ziggy as it always was for my Rebel. Keep us in the picture please.

Crossing fingers and toes that Ziggy's quality of life will remain good, which will be good for you too. It's so difficult to watch our much loved dogs go through this isn't it, so my thoughts and prayers are with you.
 
Wow, what an exhausting and stressful week for you and Ziggy -- I am so glad things have settled now.

Can you list what meds he is on again? Is he still on gabapentin or have you tried Lyrica? Is he on omeprazole or cimetidine? Usually these would be used before frusemide would ever be considered, as they work the same way and do not have the kidney risk. Is he on any full time painkiller such as tramadol? If he is having breakthrough pain then I'd definitely move him from gabapentin to Lyrica, at the very least. What is his current dose of gabapentin? Some dogs go on both gabapentin and Lyrica.
 
So sorry that you are having such a rollercoaster with Ziggy, but glad he seems better at the moment. I would second what Karlin has said about medication - most neurologists don't now prescribe frusemide, not only because it can damage the kidneys but because used long-term it can eventually damage the heart. And the logical place to go if a large dose of gabapentin isn't really working is Lyrica.

To be honest, if Stephanie was my neurologist I would want a second opinion - which you have every right to ask for - and see if you couldn't take Ziggy to see Clare Rusbridge in Surrey. Clare is the leading researcher into CM/SM, and such a caring person, with a huge experience of treating Cavaliers. She doesn't come cheap, so I hope Ziggy is insured! But I don't think that simply increasing gabapentin and adding frusemide is going to get to the bottom of the sort of pain Ziggy is experiencing. Red eyes can be indications of headaches due to pressure behind the eyes from enlarged ventricles (the spaces at the front of the brain), and in my experience with Oliver gabapentin doesn't really touch it.

If you look in the In Memoriam section of the forum you will see my tributes to Oliver and Aled, who have both been put to sleep in the last 10 days :(

Kate
 
PS If Ziggy has another bad pain episode, video it. Then if he doesn't show signs at the vet's, you can show it and say this is how he was. Vets need to see what they are dealing with.

One way or another, I hope you can make Ziggy much more comfortable :xfngr:

Kate
 
PPS (Sorry!) It might be a good idea to start keeping an eye on air pressure. A lot of people find that their Cavaliers with CM/SM have bad days when the pressure goes sharply up or down, and lately it's been going up and down like a yo-yo. At the moment, for example, in our area it's around 1038, which is 28 millibars above the norm of 1010 - a huge rise. You can check the pressure on the BBC weather site, or get an app - if you find that Ziggy's pain episodes are related to sharp ups or downs in air pressure, you may be able to look ahead and give him extra painkillers like tramadol or metacam when the pressure changes. It seems to work!

I shall NOT send you a PPPS!

Kate
 
Hi all!

Im so so sorry to hear about Oliver and Aled, Kate, such a difficult time to go through, must be really hard. :(
Having met both of them at the meet up, they were brilliant, as all Cavs are. Such sad news. Lovely tributes you did for both of them, didnt know Oliver was a PAT dog!
You've provided them the best home and in return they were excellent companions.


Ziggy is on the following meds as of now:

Gabapentin 100mg - 3 capsules in the morning, lunch and evening.
Amitriptyline 10mg - 2 tablets, one for morning and one for bed.
Omeprazone 10mg - One capsule given once every day.

We managed to video his last episode and we showed it to Stephanie which helped quite a bit.
On the second opinion front, we totally agree. Stephanie is leaving to go back to France this week anyway so we will be forwarded to one of her colleagues who have given us more satisfactory results in the past. Given the doses of the medications he's on, would that be why he hasn't been tried on other meds? Or is that just a question of opinion of the Neuro?
RE to the weather, I was monitoring it around the time he was having his episodes and the changes in air pressure were fairly minor, so it might not be that but still cant rule the possibility out I suppose.

We might ask for James or Sebastian when we get the results so we can have a talk with either or of them two as they have mentioned similar medications as others have mentioned here, so that sounds like a good option.
Il keep you posted!


PS: Ziggy still seems OK which is good!

All the best, Kate :(
 
I've found Sebastien helpful - though he treated Aled for myoclonus not for CM/SM. I remember you saying that he was helpful on the phone when Stephanie was away. If '3 capsules' of gabapentin means one three times a day, that is the minimum starting dose, and probably far from adequate for a dog with Ziggy's pain episodes.

Glad Ziggy is still OK - hopefully a change of neurologist will help to keep him that way.

All the best

Kate
 
Hi all!

Sorry for the delay in progress update, the family has been knocked by a sickness bug and numerous other things, all begging to return to normal now!

We are now with someone else at Willows and he seems to have a pretty good idea of where we are at and said to ring him any time. We have had ziggy on 3 capsules 3 times a day (so thats 3 for breakfast, lunch and dinner) currently, they said we can keep putting it up so long as its not sedating him (which currently it isnt) . To make it easier for Ziggy, we have changed the Gabapentin pills from 100mg to 300mg, so rather than having to get him to scoff 3 capsules, he only has to scoff one. Also, I have noticed the 300mg gabapentin seems to be more effective? I cant say its made any massive difference, but he certainly seems to be sleeping a little more peacefully after the 300mg pills, which is interesting. Maybe its sedating him a little more than the 100mg per capsule? Anyway, that aside he has been fairly ok, I cant say Ive been overly happy with him but we havent had to change to the Frusimide which is a good starting point I suppose. When we get time, Il ring up the new Neuro (Il get his name, unsure exactly what is name is) and see if/why not other gabapentin alternatives like you mentioned earlier as that seems to be the route a lot of other Cavs are going down.

Anyway, I hope your all ok! :D

Il keep you posted :)
 
Hi James, Hope the family are better, there seem to be a lot of coughs and colds and tummy bugs around at the moment, perhaps because the winter has been pretty mild, with no really cold weather to kill off the bugs.

Glad to hear Ziggy is no worse, even if he's not much better, and that you have changed neurologist (is the new one Sebastien?). Us CM/SM folk forget that there are a lot of other neurological diseases out there and even neurologists can't be expert in all of them, and your previous neurologist did seem to be floundering a bit. Perhaps now you'll be able to get Ziggy more comfortable.

The Companion Club had a very good Health Seminar last October; the main speaker was the leading CM/SM researcher and neurologist, Clare Rusbridge. Her talk has been put on DVD and you might find it helpful to buy a copy (price £6) from the Cavalier Matters online shop (http://cavalier-gift-shop.org/companion-cavalier-club/health-seminar-dvd/prod_684.html) - it will bring you up to date with the latest thinking on CM/SM and treatments. If you prefer, you could borrow my copy, just send me your address.

My favourite quote from Clare's talk (bearing in mind that both gabapentin and lyrica are human drugs): 'We never use anything on our dogs until it has been thoroughly tested on humans'!

You can't really think that far ahead for Ziggy, but we're having another Cavalier Weekend at Copt Oak, 11-12 July and it would be great if you could come over for a few hours as you did last year.

Kate
 
Hi Kate!

So sorry for the gigantic gap between the update! Very unfortunately my 83 year old (going on 60) grandma fractured her hip on holiday! So we all had to go down there and help my grandad out while she was recovering from surgery. All is well now and shes back at home, they said shel be back on her feet properly in about 3 months.

Thanks for the DVD link, IL definitely have a look into all that when we get more time!

RE to Ziggys progress, we're more or less happy with it because we have seen his mobility decrease but he is comfortable and definitely happy, couldnt say hes in any pain but hes just a lot more fragile on his legs than he used to be. This has just come out of nowhere, but seeing as he is 10 now I suppose this is something we are going to see considering his age and condition. He can still get about though! He just falls over on the odd occasion and finds it difficult to coordinate his legs from time to time.

When this first started happening we were really really worried because we thought it would be accompanied by pain or discomfort and rapid decline of some sort but it doesnt seem that way. His paw licking has increased which we will be ringing the neuro about soon.

Over all though, we are pleased that our current treatment seems to have hit the spot pain wise (from what we can see).

Very unfortunately, due to the situation with my grandma we wont be able to make coming to the event :( . Thanks very much for inviting us though! :)

Anyway, I hope you're all doing OK?

Best wishes!
 
Hi James

Glad your Grandma is recovering well from her fractured hip - such a shock for her. Good news of Ziggy as well. If you are seeing your neuro any time, it might be worth asking him/her (not sure who you're seeing now) about the possibility of Ziggy's wobbly back legs being due to Degenerative Myelopathy. This is a progressive paralysis of the hind legs that used to be associated primarily with German Shepherds but is now recognised in several other breeds, including Cavaliers (is there anything Cavaliers DON'T get??). My Oliver almost certainly had it; it doesn't cause pain, because the nerves stop working, but the muscles get wasted and it's difficult for the dog to support himself on his hind legs. Oliver also got a rather curved back because he was tucking in his abdominal muscles to keep his hind legs upright. Oliver managed to keep pretty mobile for several years and didn't really start collapsing frequently until he was 13; it was when he could no longer go for walks at all that I decided that his low quality of life needed to be ended. There doesn't seem much you can do to slow things down, though hydrotherapy or physiotherapy might be worth exploring. But I'm really gld to hear that Ziggy's CM/SM seems to be under better control - it's a long time since you've been able to describe him as 'comfortable'!

Two weeks ago I got a new Cavalier, a blenheim bitch called Ruby who had her sixth birthday in April. At the moment she looks rather like a beagle, having had a close trim of her hair! She came through Many Tears, the rescue where I got Aled, but is not from a puppy farm, she is a pet whose owner could no longer keep her because of ill-health. I think she has been a bit spoilt, but like Oliver is very laid back and seems to take most things in her stride - in the last 10 days she has got used to buses and trains, walked in a bluebell wood with 7 other Cavaliers, been to the Companion Club AGM, walked 1.75 miles in the Coventry Walkathon to raise money for the Cavalier Matters charity, and is learning some basic obedience! She needs to lose about 2kg, se we are doing a lot of walking! I'm hopeless at putting photos on here, but perhaps you will be able to meet her one day. I still miss my boys very much.

All the best

Kate and Ruby
 
Hi James from me too. I just wanted to say that I am still reading your updates on Ziggy, but what is now happening is out of my experience with Rebel, so there isn't any advice I can give you.

You are of course both in my thoughts and prayers and I'm not just saying that, I really mean it, as I'm still raw after all the problems that Rebel had. I do so hope that Ziggy's improvements will be maintained and that he will stay free of pain for a very long time to come.
 
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