PDA

View Full Version : Lola's SM



AgilityLola
24th August 2010, 10:39 PM
Hi,

i'm new to the forum so thought i would share a bit about my Lola. Lola is my 2 year old blenheim cavalier, who i know has SM. She hasn't had the MRI yet but i have seen enough signs to know she's got it.

I think i first noticed the signs when she was 14 weeks old. i was brushing her and suddenly she started scratching her right side. i dismissed this and didn't think anything of it until the signs started becoming more obvious. she first started scratching on lead when she was about 11 months old, she only did it a few times in about 3 months, but i knew this was one of the signs of SM so started to monitor it. By the age of one, last august, Lola couldn't go on a walk without air scratching one or twice. I told my parents and even though she has insurance mum didn't want to take her because of the fear of it.

It has taken until she turned 2 for my mum to let me take Lola to the Vets because of her SM. Though the SM hasn't progressed much more in fact it isn't as bad, she doesn't scratch as much, but the sensitivity in her back end has increased and she has started fly catching.

So this Thursday we are taking Lola to the Vets about her SM. i don't know what to expect as my Vets has never had a case. i have talked to them, as i work there, and they say that drug management is less extreme than surgery. But i would prefer to get rid of it, she is a strong healthy dog and i know that drugs just mask the effects for so long until they stop working, so i rather it were gone.

Also i was wondering about referrals, as my Vets have never had a case, where can i go to have the surgery?

i really don't know what is going to happen so any help for previous experience would be really helpful, please.

Naomi x

Karlin
25th August 2010, 01:14 AM
Hi Naomi:

Really sorry to hear about Lola.

You will want to have your vets check her throughly as there are other things that could cause some of these symptoms. The only way to get a proper diagnosis though is by MRI which will require seeing a neurologist. If your vets know little about SM you have two choices -- to stick with them and hope they too will learn as they investigate the possibility of SM, or opting for a vets with more familiarity. I am guessing you are in the UK -- if so there are several neurologists very familiar with this condition and also many vets.

One thing to understand though is that surgery will not get rid of SM -- it can for many dogs halt further progression but existing damage is generally done and in about half of dogs who have surgery, symptoms do return as well as some (usually much slower) progression. About 20% of dogs end up being euthenised due to pain eventually. Others have very slow or little progression and few symptoms or no symptoms. For many dogs medications work fine for the life of the dog. It isn;t true that they stop working though for some dogs they are no longer enough to halt the pain of their condition. But the prognosis generally isn;t as good for medical treatment rather than surgery. There is also no cure for SM either way, only management.

There's lots of information on Clare Rusbridge's website (http://www.veterinary-neurologist.co.uk/faq.htm) and I also have some on www.smcavalier.com and there's more info on www.cavalierhealth.org, amongst other sites.

On suggestions of where to go: where are you based? The leading specialist is Clare Rusbridge in Wimbledon but others also do surgery.

Nicki and Elvis
25th August 2010, 10:25 AM
So sorry to hear about Lola but I think you will feel a lot better when you have a diagnosis i know I did when Elvis was diagnosed. He started showing signs as early as Lola and was more severe.

He has had surgery and is now on medication, it is frightening to know this is happening and they are in so much pain you can do nothing to stop it for them :( But the vets will help them as much as possible and there is so much support here for everyone.

thinking of you and Lola x :flwr:

AgilityLola
25th August 2010, 05:25 PM
Hi Naomi:

Really sorry to hear about Lola.

You will want to have your vets check her throughly as there are other things that could cause some of these symptoms. The only way to get a proper diagnosis though is by MRI which will require seeing a neurologist. If your vets know little about SM you have two choices -- to stick with them and hope they too will learn as they investigate the possibility of SM, or opting for a vets with more familiarity. I am guessing you are in the UK -- if so there are several neurologists very familiar with this condition and also many vets.

One thing to understand though is that surgery will not get rid of SM -- it can for many dogs halt further progression but existing damage is generally done and in about half of dogs who have surgery, symptoms do return as well as some (usually much slower) progression. About 20% of dogs end up being euthenised due to pain eventually. Others have very slow or little progression and few symptoms or no symptoms. For many dogs medications work fine for the life of the dog. It isn;t true that they stop working though for some dogs they are no longer enough to halt the pain of their condition. But the prognosis generally isn;t as good for medical treatment rather than surgery. There is also no cure for SM either way, only management.

There's lots of information on Clare Rusbridge's website (http://www.veterinary-neurologist.co.uk/faq.htm) and I also have some on www.smcavalier.com and there's more info on www.cavalierhealth.org, amongst other sites.

On suggestions of where to go: where are you based? The leading specialist is Clare Rusbridge in Wimbledon but others also do surgery.

I would like to go to Clare Rusbridge. the distance isn't bad as i have relatives who live in Wimbledon. i just want to do as much as i can to slow it down. Currently she isn't in pain, she only has the scratching. so i would like to keep it that way for as long as possible. where are the other Vets that offer treatment for SM? i can only really find the Stone Lion referals.

Karlin
25th August 2010, 05:40 PM
I don't have a comprehensive list but any UK neurologist will have been dealing with this. The Royal Vet College has neurologists who deal with SM for example. You actually really need to see a neurologist, not a vet (Clare is a neurologist :thmbsup:). She's the person I would see. But vets should eliminate all other possible causes of scratching. Air scratching in pretty distinctive to SM however.

Blondiemonster
25th August 2010, 06:08 PM
Sorry to hear about your Lola. I've recently been going through it with my Blondie and I realize how hard it can be. I hope you find a great vet and that whatever options you go with, Lola finds relieve of her symptoms. Good luck!!!

Soushiruiuma
26th August 2010, 04:05 AM
The Royal Vet College has neurologists who deal with SM for example. You actually really need to see a neurologist, not a vet (Clare is a neurologist :thmbsup:).

I'm just looking for some clarification on this. In the US a veterinary neurologist would have to have a doctor of vet med degree (DVM, or MDV) and neurology would be a specialty above and beyond that certification. Is that true in the UK as well? I had assumed that Clare's qualifications would include being a vet, is she not?

AgilityLola
26th August 2010, 08:24 PM
Update ~

Ok, so we saw our vet today and we ran through the options.

firstly we need to get Lola's MRI done. so the vet says she'll talk to Mr Bentley the head vet to see where they normally send people for the 'yes/no syringo' MRI. then we discussed management. i was thinking of using drugs to manage it until after Crufts, but then there is nothing in the way for her not to have the surgery. But the Vet was talking about how the surgery is quite drastic and that there has to be a certain amount of severity in the SM for the dog to have surgery, which i didn't know about.

so now i'm just waiting for her to call, and then we can book in the MRI, so at least we've go the ball rolling to helping Lola have the best quality of life. :)

Sandrac
27th August 2010, 11:09 AM
Sorry to hear about Lola, but you will get so much support and advice from this forum with joining all of us as we go through the SM journey. :-)

Minnie was diagnosed in April this year following an MRI scan. I had had suspicions for a few months, but my vet kept saying it was muscular. I finally joined a group of breeders that were taking their dogs to Stone Lion for MRI's. Minnie is now under the care of Claire Rusbridge for which I am so thankful.

Karlin
27th August 2010, 11:38 AM
Actually your vet is not quote accurate (though this is not unexpected as this is a specialist condition, and vets are GPs and won't generally be keeping up with research and practice in this area).

There is a line of thought that early surgery gives a much better result -- before more damage is done. Damage can be permanent if not prevented. The body does not tend to be able to recover from the neurological damage caused by SM -- which is why so many dogs remain on medication post-surgery. Other neurologists wish to wait til the SM reaches a certain point before recommending surgery over medications, as with some dogs, it may be that medications will successfully manage their condition over the dog's lifespan.

Also, severity really cannot be assessed til an MRI is done, as they correctly note. A dog may have a quite severe case but few symptoms, especially if young. But still may be an urgent surgery case, as the dog's best chance.

You should consider as well that activities like agility increase the speed of the flow of the CSF -- cerebrospinal fluid -- and it is this increased speed which is believed to cause syrinxes to form and worsen the condition. So continuing with agility may be detrimental to Lola as far as her condition goes. On the other hand, agility may be what gives her a great quality of life and even if the activity may affect her overall lifespan, owners may feel that doing an activity like this s what the dog most enjoys and therefore outweighs other considerations. This incidentally is why many neurologists recommend spaying or neutering an SM dog -- the increased level of excitement, especially for males, also increases CSF flow and is another element that can over time contribute to the dog's pain and advancement of SM.

It is a very hard issue -- I do not do agility with any of my SM dogs but am happy to allow my most affected dog to run and play when he wants. He is generally a quiet dog though so he doesn't do too much racing about.

I would actually ask to be referred to the neurologist you want to see -- there is considerable difference between some services and neurologists. If I were close to Wimbledon then that is where I would go without a second thought. The issue about her agility and competition is probably something you will want to discuss with a neurologist, especially if you choose to manage her condition with medications.

All of these are hard choices and difficult decisions. Many of us have been there and we all make different choices based on the facts of our individual dog's case and our own comfort zone. There is no right or wrong but each choice has consequences and sadly once a dog has this condition and is symptomatic, some hard choices always arise and there's no certainty of outcome.

Tania
27th August 2010, 11:41 AM
where are the other Vets that offer treatment for SM? i can only really find the Stone Lion referals.


Here is a link, which also includes Stone Lion.

http://www.thecavalierclub.co.uk/health/specialists/specialist.html

Karen and Ruby
27th August 2010, 03:57 PM
Good Luck with your desisions my love.

I actually didnt know that high activity levels increases the flow of CSF and there for can increase the progression etc.
Im glad I didnt know either to be honest. Im getting Ruby scanned again early next year to see what sort of progression she has had over the last 18 months.

Im not going to stop doing the activities with either dog though as I want her to be able to have the most enjoyable life she can and if that means its shorter then so be it. Making her sit still and be careful just isnt in the equation- shes a dog and no disease is going to stop her from being one and enjoying her life.

And well as for Charlie- Id like to see anyone try and get him to calm down- by God he is the most active little soul and never stops! Ever! For him also he needs to run and bash about and fall over and jump in the air- its his thing and I love it.

What will be will be and I dont think any of us will ever know exactly what causes this disease to get worse or stay the same. It is a combination of things and to take away a dogs ability to enjoy its life and be a dog is just as cruel as the disease itself. By that i mean for those dogs who are still able to live a normalish life- im by no means saying that when Ruby cant do these things anymore I will make her!!

We all know what is best for our own and only you can make that desision for Lola but please follow your heart!!

Sabby
27th August 2010, 04:29 PM
I have pm'd you. And like I said the best place if you can't go to C Rusbridge is The Willows in Solihull. I ve been theri with my friends Cavalier that had an MRI Scan and they very good.

AgilityLola
27th August 2010, 04:44 PM
I'm already considering stopping the agility with Lola, it is coming to the end of the season, so she wont be doing anything after september anyway. i wanted to stop the agility at the start of next year, but now she has qualified for Crufts i think she would like to go out with a bag lol.

So after Crufts i'll retire her, unless the vet says it isn't having to much of a detrimental effect or she is still really enjoying it as she does now. Then maybe she can do it once a month, if she feels up to it.

Karlin
28th August 2010, 12:20 PM
It is amazing to have qualified for Crufts and unless she is really having problems by then I'd certainly do that with her. You may well find you are only talking about a small syrinx, if she has one -- my dog that only scratches occasionally has a really tiny syrinx (when scanned at 4 -- and as she has scratched for 3 years I think that's pretty slow progression with unchanging symptoms). If the syrinx and symptoms are minor, I don't know that I'd stop doing agility. I wouldn't be practising every day or anything like that but i"d not stop doing it. Once you have a scan you can discuss all this with a neurologist. :thmbsup:


I'm just looking for some clarification on this. In the US a veterinary neurologist would have to have a doctor of vet med degree (DVM, or MDV) and neurology would be a specialty above and beyond that certification. Is that true in the UK as well? I had assumed that Clare's qualifications would include being a vet, is she not?

Yes it is the same but in the US as well you generally wouldn't refer to a specialist as being a vet. A vet neurologist or vet cardiologist yes, but not 'a vet'. They do not generally run a practice as a vet -- they don't usually see general cases. They see cases connected to their speciality. Specialists themselves in both countries would refer to 'vets' as the people you should see first before a referal to a specialist like a neurologist, cardiologist etc. But yes they are all vets too! :)


dont think any of us will ever know exactly what causes this disease to get worse or stay the same. It is a combination of things and to take away a dogs ability to enjoy its life and be a dog is just as cruel as the disease itself.

Actually it is broadly accepted that CSF flow is at the heart of the problem in humans and dogs even if the precise mechanism for syrinx formation is not understood -- the blockage caused by herniation of the cerebellum (where the brain is blocking the entrance to the spinal cord) and turbulence created by the obstruction and other elements. The altered CSF flow is what creates syrinxes, and increased CSF flow is definitely known to create more pain -- that is why dogs start to scratch or have pain sessions when they get excited, so the link is pretty direct.

I do think there's a difference between a dog playing and managing the activity or having them do extra activities -- agility for example is a wonderful sport but it is something that we add to a dog's activity level and therefore is our own decision made for the dog, and has to be weighed up just as one may try to manage activity in a dog with a luxating patella, hip dysplasia etc. Once a dog has SM and especially if it is symptomatic, it no longer has a 'normal' life and from that point forward, I think we need to accept our own decisions on what we do with our dogs may have consequences detrimental in ways to the dog. I do not think limiting activity is in any way or could ever be in any way as cruel as the disease. But for those dogs who are really active and really enjoy dog sports, of course weighing up their enjoyment is going to be a factor in what an owner decides to do. But the responsibility for the choice is of course the owner's, and that is part of the horrible burden of this condition. :( We don't get to make normal decisions about normal dogs once they have SM. We have to make often difficult decisions about dogs that, if symptomatic, already have a day to day level of discomfort or pain that we cannot really understand. And a dog will do an activity through its pain to please its owner as well -- so this too has to go into the scales -- are we really seeing what the dog would prefer or what the dog is happily wiling to do because we prefer that it be doing some activity and has been trained to recognise the reward of doing that activity correctly?

I think to some extent all of us struggle with these questions whether talking about agility, runs, walks, or just day to day life for an SM dog -- reading whether they are experiencing a massive headache, the most common and frequent difficulty for human SM sufferers, is very hard with a dog, for example. I know Leo, regardless of level of pain, would struggle to do what he thinks I want. This ws very clear when he had the horrible pain session when I was recently in the UK, and despite crippling pain he was trying to come to me because I was saying his name in worry. And moving was making the pain worse. It was really terrible to experience. :cry*ing:

Karen and Ruby
28th August 2010, 07:51 PM
Actually it is broadly accepted that CSF flow is at the heart of the problem in humans and dogs even if the precise mechanism for syrinx formation is not understood -- the blockage caused by herniation of the cerebellum (where the brain is blocking the entrance to the spinal cord) and turbulence created by the obstruction and other elements. The altered CSF flow is what creates syrinxes, and increased CSF flow is definitely known to create more pain -- that is why dogs start to scratch or have pain sessions when they get excited, so the link is pretty direct.



Sorry, I didnt mean that the way it came out- but what I meant was that why some dogs get very long and thin syrinx and some get short but wide syrinx?
I should really read through what I write before I post it!

As has been said before the wide syrinx tend to show more symptomatic SM than the long thin ones? But why do the syrinx appear differently in every dog and why do some take a long time to grow with little to no symptoms and in others it is very aggressive and painful very early on. How can it in the minority of cases with very young puppies be so extreme so early- A friend of mine had to have her cav put to sleep at 7 months with SM as it was so bad and so painful for her and they tried everything! And for those with CM like my Charlie, why hasnt it become SM? Some do some dont but there must be another reason why the SM develops?
Im sure all these questions are answered somewhere that I havent read?

I am very very lucky with Ruby that the Medication she is on has given her back the ability to lead a normal life- and for me it is normal compared to the first 18 months of her life she spent in pain not able to do much at all before she was diagnosed. I feel very guilty that she wasnt diagnosed earlier (a many others do Im sure) but I have noticed the extreme difference between her motivation to do stuff now compared to 18 months ago.
We have gone through all the stages of trying different meds, on Gabapentin she couldnt do anything (barely a walk) and when she feels poorly she WILL NOT do ANYTHING! And I truely respect her desision too! She has a mind of her own and if I take her along to training for Obedience or Agility and she doesnt want to do it she wont. No matter how much Liver cake I have she will stand there like a statue. Ill put her back in the car and get Charlie out for an extra go instead.

But for now I would say that her symptoms appear maybe once every fortnight or so. And that is scratching and nothing more, Which I am truely thankful for- BUT I also know that one day the Lyrica wont be as affective and she will have to slow down. And I am ready for those days too but right now she is in her prime and she lost out on her adolescent days to the pain and we are making up for it now.
I sometimes forget how poorly she is to be honest- because she is so active. No one we come accross beleives that she is poorly either. And I like the fact that im not faced with it every day as dealing with this single handed is very difficult. Every desision I make with regards to her life Is one that I will have to live with till the very end. And that is very hard to cope with sometimes.


What ever you decide for Lola everyone on this board will be behind you all the way- and that I do know from experience. It is still early days and your neurologist will give you all the facts for you to make your desision :wink: