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monty's been diagnosed with SM

Montster

Active member
monty is a little over 4 1/2 years and this past sunday, he lost a lot of strength in his back legs. the neurologist thought he had a ruptured disc that could warrant surgery, so we had an MRI done to make sure.

the disc was actually very mildly ruptured (no surgery needed) but the MRI did show a large number of syrinxes in monty's spine. obviously, we are just devastated.

i think we were too shell-shocked with the news (as we would've much preferred a ruptured disc that could be fixed by surgery vs SM) so we didn't ask a lot of questions (although subsequently, we have put in a call to the neurologist to ask him some follow-up questions).

in the meantime, if anyone has any insight, that would be greatly appreciated:
1) are there stages of SM? if so, is losing strength in the limbs, combined with ataxia, towards the beginning, middle or end?

2) monty has had some other signs of SM, such as lip-licking, the scratching of neck, screaming for no reason. do these usually indicate stresses or that he's in pain? other than the screaming, he is a very happy little dog. for those who have dogs with SM, are there any other indications that the dog is in a lot of pain?

3) is SM usually treated with medication or surgery or combination of both? right now, monty is on prednisone (5mg a day). i've read some of the other posts and am not familiar with the drugs that other owners are giving their pups. all they all types of steroids?

those are about all the questions that we can deal with right now; thanks so much for reading.
 
I am so sorry that Monty has been diagnosed as having SM :( I'm glad though that you guys have finally positively figured out the problem. It sounds like you're well on your way with the neurologist. I have no personal experience with SM so I will let the experts answer all of your questions.

I hope Monty's diagnosis will lead you to the correct line of treatment, and he will soon be a lot more comfortable :lotsaluv::flwr:

:hug::hug::hug:
 
You've definitely come to the right place for guidance and advice. I'm so sorry Monty has been diagnosed with SM but am sure you will give him the best possible treatment. Hang in there and know we're all pulling for you.
 
I'm really sorry you have this diagnosis. :flwr:

You can find what answers exist to your questions on www.smcavalier.com but I will try to give a brief version. This problem for us all is that this is a very poorly understood condition and highly variable. So really: there are no definite answers. This is one of the huge frustrations with this condition.

1) are there stages of SM? if so, is losing strength in the limbs, combined with ataxia, towards the beginning, middle or end?

In short, no, there are no definite stages and symptoms vary enormously from dog to dog; but the signs you are seeing combined with scratching and screaming indicate a dog that is at the more serious end of the scale (as you also saw in the MRI). Ataxia and limb weakness are the points at which Dr Clare Rusbridge recommends surgery if that is an option the owner is considering. I know from conversations with her that this is what she considers a serious tipping point for many dogs IF surgery is a consideration. For many reasons, it may not be for some and is for others.

2) monty has had some other signs of SM, such as lip-licking, the scratching of neck, screaming for no reason. do these usually indicate stresses or that he's in pain? other than the screaming, he is a very happy little dog. for those who have dogs with SM, are there any other indications that the dog is in a lot of pain?

These all indicate he is having fairly serious levels of pain and neuropathic effects, especially the screaming. The screaming alone means a LOT of pretty severe pain, as your neurologist will confirm. So you definitely want to get him immediately onto a treatment regime. Limb weakness is a sign of fairly serious neurological damage too -- this is why Clare considers this the point at which to do surgery to prevent further decline, if someone is considering surgery.

3) is SM usually treated with medication or surgery or combination of both? right now, monty is on prednisone (5mg a day). i've read some of the other posts and am not familiar with the drugs that other owners are giving their pups. all they all types of steroids?

Only Prednisone is a steroid (the various drugs are explained on my SM website (y)). The choice is different from every owner and you will need to weigh up what you wish to do in consultation with your neurologist. My website has a lot of info on these options. Prednisone is not really a long term option as it has so many side effects but there are combinations of things you can try -- gabapentin is definitely the drug of choice for pain for many dogs but the effects can wear off for some dogs over time and you have to up the dose (or the condition progresses and needs a higher dose). To be honest, if he has the signs you are seeing at his age (which is fairly young) you are probably looking at palliative care if you choose medications, vs the possibility of a longer life with surgery, but surgery has risks, and dogs on meds alone also can do OK, but these tend to be dogs that remain fairly stable or do not get early onset symptoms (eg before age 4). Probably the most successful surgery right now is that done at LIVS.org; there's a neuro in the Chicago area that also does it, but this cranioplasty procedure is somewhat more invasive and long term results are not known.

The documents that might be of most help to you right now are Clare Rusbridge's intro to SM on my website, her podcast also on the website, and her treatment diagram (ditto). All three can be downloaded directly from the site.

Be sure to take the time over the next week or two to try to sit back, read the info available, and decide which way to proceed. There is no right direction -- we all have to make those hard decisions as there is not cut and dried 'best option'. The hard truths are that there is no cure, there is no clear line of progression for the condition, it almost always does progress, and as Clare Rusbridge says in one of her documents for pet owners, 'No one can decide what is best for your dog for you'. The best thing to do is learn all you can, talk extensively to your neurologist, get a second opinion if you want, talk to other owners of SM dogs. :flwr:

Also be sure to tell Monty's breeder that you have this diagnosis as such information is absolutely critical for breeders.
 
PS How familiar is your neurologist with SM? I recommend finding someone who definitely knows this condition in cavaliers -- you will find those neurologists marked in red on www.cavalierhealth.org are those known to have worked with SM cavaliers. This can really make a difference, just in case you are seeing someone less familiar, or want a second opinion on options.
 
thank you everyone for your kind words & support - i know monty really appreciates it too (as he is blissfully passed out next to me :)

karlin - i'm not sure as how familiar w/ SM our neurologist is, but he did know what it was.

i think we need to start figuring out next steps in the next few days, as i'm much too emotional today to think very clearly.

one other question: where do you buy SM medication from? your vet/neurologist? thanks! :)
 
Your neurologist is the one who will prescribe generally. My vets write the prescriptions based on what my neurologist prescribes. I work with Clare Rusbridge for Leo and follow her general protocol, which you can get from my SM site. Most vets do not want to make decisions on medications for this specialist condition and will not be familiar with prescribing most of the drugs used with SM a they are almost all human drugs, not vet versions. Any decision on using any of the drugs should always be made in consultation with a neurologist. (y)

It is very much worth checking the neuro listings on Rod's health site. Any neurologist will be familiar with SM but there can be a very large difference in how someone familiar with it in cavaliers treats it.

The usual approach via Clare would be to have the dog on frusemide or a proton pump inhibitor like Tagamet or Prilosec, then gabapentin for pain, sometime rimadyl or metacam. Steroids are useful to help pain initially or for really bad cases but often gabapentin does far more ad has few side affects. Often many of us rotate around different drugs in conjunction with our neurologist. I initially had Leo on frusemide alone, then added gabapentin, then dropped frusemide and used tagamet, then prilosec, and am back to tagamet as seeming to work best with gabapentin (saw little improvement with prilosec). All dogs are different. Some are helped by acupuncture. As for most of us with SM dogs, gabapentin is the cornerstone of Leo's meds though. Leo is hitting 5 and probably I will have to make a decision on whether to go for surgery over the coming year. He has only a small syrinx and moderate symptoms -- scratching mostly and occasional sensitivity on one side of his body. He clearly experiences pain -- you do learn to read it even when your dog tends to hide most outward signs.

If you check the CKCS-SM-support list archives which are on open access (it is my Yahoo group) you can get a lot of discussion on meds etc.

Even with surgery most dogs continue to need some meds for scratching at least. Most remain on gabapentin for their lifetime.

None of these approaches are cures or ideal treatments though, and the condition does generally progress. Even with the surgery about 20% see no improvement, and about half of dogs see a recurrence because of scar tissue probably, though 'recurrence' may not mean at anything like the level the dog initially experienced. The cranioplasty seems to see better results. It is important to understand this context for making decisions. The most important goal is reducing pain.
 
So sorry about Monty. I am sure you will make the best decision for him since you are working hard to understand the problem and how it is affecting Monty. He is fortunate to have such a caring person! I keep my:xfngr: for you.
 
Sorry to hear this. But the good thing is that now you know and you can deal with this and manage pain and reactions etc.

Also it is so good that Monty lives with you. Many Cavaliers go through this and are never diagnosed and never get help.

I really do feel how hard it must be even though I don't have first hand experience. I do however have second hand experience and feel bad for Karlin's Leo when he stays with me when I can see him getting uncomfortable, scratching or just the face he makes when something feels odd inside of him. I have learnt what helps to make him feel better, for example a certain gentle cuddle or just allowing him to curl up on my lap while I kneel down in front of him or just removing all the other dogs and having some alone quiet time can help too.

As regards all the other medical stuff, well we are very lucky to have someone who cares so much about this issue (Karlin) and a whole load of information on the condition to research. The more you understand about it the better ou will feel as you learn to help Monty through.

x
 
I am so terribly sorry about Monty. :( Our neurologist writes a prescription for Spencer's medication, which I fill at Costco. I shopped around a lot and found Costco had the best price on Gabapentin.
 
We're thinking of you and Monty, and hoping Monty feels better soon and that you'll find the right meds for him. :flwr::hug: It's a lot to take in all at once. :flwr:
 
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