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Luka's SM Update

goda

Well-known member
Luka's Gabapentin has been increased to 4 times a day and he gets codeine 3 times a day. He also has Rimadyl which is supposed to be delicious but he won't eat it unless it is in a pill pocket. He gets that twice a day, air scratching is minimal.

We will be trying acupuncture next. Over all Luka is looking better. He has a healthy heart and is over all doing much better. SM is not the end all, I think as owner's most of us that get the diagnosis with the first dog, panic.

Dr. Kline said that this is no different than living with a disability. She seems very pro medication, and not so keen on surgery because of the extensive damage to his spinal cord already. If there is a sign of progression she is for surgery but seems to be more oriented with treatment.

Thanks for all your support and input.
 
Glad to hear Luka is feeling better. I hope he continues to improve with all the medication and of course love(y)
 
The general experience seems to be that getting the medication - both variety and dosage - right is a matter of trial and error for a few weeks or months, so let's hope you've now found the right mix to keep Luka comfortable.

Kate, Oliver and Aled
 
I am so glad that Luka is getting the meds to help him and that surgery can be put off for awhile. Its great news! Hearing what you said helps me as a new puppy owner that this will not be a death sentence, that there are things that can be done to give your dog a good life. :hug: Becky
 
I am glad that the mix of meds is working -- great news, and that gives you time to consider options as things go along. (y)

I cannot agree with Dr Kline however agree that dealing with SM is like dealing with a disability. Most define a disability as an impairment to normal activity. While this may be an accurate description for a subset of cavaliers with symptomatic SM, it is still almost always progressive and for significantly symptomatic dogs (and many will eventually progress to that point) it often eventually requires euthenisation regardless of whether one opts for surgery or meds (see Clare Rusbridge's report on this). I am not sure many on the medical side would use 'disability' to accurately sum up what sufferers of SM, whether humans or our dogs, live with. To me, and I have three dogs with condition and have worked with/spoken to several of the key researchers and to others with affected dogs for going on 8 years now) that's like describing cancer or any other life threatening, often progressive condition as a disability. For the same reasons, I could not describe MVD as a disability and I think it would be hard to find a cardiologist who would consider it a disability as opposed to a potentially life-threatening and often extremely debilitating serious illness.

Most of us with affected dogs do not live with the certainty of management options we might have with a dog with a disability. I have had animal with disabilities, such as an amputated leg, deafness, etc. My only uncerainty with those conditions was making sure the animals did not get outside off lead, Or a mild concern about some increased prospect of arthritis. With SM cavaliers, you live with a day and day out concern that today may be the day a screaming fit happens, that meds cease to help, that you need to make a rushed decision on surgery or euthenisation. You have to weigh up every day how much pain the dog is living with, despite what the medications mask and the small comfort that they bring. Plenty of humans with the conditions say drugs do very little to help with the severe headaches or the disturbing skin crawling sensations, that we may only see in our own dogs manifested by occasional scratching–and no dog can tell you whether it has an unbearable headache (those who the face rubbing signs may sometimes indicate some degree of that). Human neurologists have very few tools to help people live comfortably with this condition, and as with the dogs, surgery often has to be repeated. If we choose not to have surgery for our dogs, we live every day with the concern that this has been the wrong decision. If we do the surgery, we live every day with the worry that this has been the wrong decision. Whatever the choice, you fear that it will eventually result in a dog needing to be euthanized earlier than what would have been the case if you hadn't intervened in the way that you did. :( of course, you do put it to the very back of your mind, but I have lived with this with one dog for over six years, and that worry is always there and increases over time rather than recedes. Any additional MRI almost always shows that a syrinx has grown.

I just cannot see how anybody could describe SM as a disability. :confused: Perhaps it is just a matter of semantics amongst neurologists, but using the word “disability” implies a fairly static, understood condition with some ease of management and care options that most evidence would suggest simply is not the case, especially for dogs with significant syrinxes and early onset symptoms. I guess the main concern for me is that as a term it gives a false sense of security that even those with dogs with few symptoms or a small syrinx just do not have, because you're always living with the prospect of progression–which can often be sudden and swift.

I am curious to know if others with affected dogs see it as a disability?
 
Most define a disability as an impairment to normal activity.

To be honest, I have never thought of Bosco's SM in terms of disability.
If I'm explaining to someone what he has, I call SM a 'condition', and in my own mind, whenever I see symptoms such as air scratching, or when he gets into a state rubbing his little face on the floor I always think of him having an 'affliction' - def: somthing that causes pain or suffering.:(

I'm glad to read that Luka is more comfortable now, good luck with his accupuncture.
 
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I am quite shocked to hear SM described as a disability :( - I would not view it as such other than as a specific part of the condition if they are demonstrating lameness and neurological defects but these can be changeable too - and obviously they can become unable to access furniture or stairs and steps.

As someone who lives with a disability, and also has a very painful facial nerve pain condition, I am perhaps well placed to know the difference and how I feel about the two separate conditions. I totally agree with Karlin, she has written far more eloquently that I would have managed and expresses how I feel. Like Karlin, I have also owned dogs with disabilities and also multiple dogs with Syringomyelia, which does feel like a timebomb - it is an emotional rollercoaster and you are constantly watching for changes.

With disabilities it is difficult at first whilst you make changes to your environment, lifestyle and management [safety being the primary concern], but once these are in place there is little change and not the same emotional burden [nor generally the financial one]


Perhaps you would be kind enough to go back to Dr Kline with our comments - I really do not feel that this is something that should be being said to guardians of dogs with SM.


Management - often a cocktail of drugs is far more effective for management. I personally would be reluctant to give Rimadyl long term there are other safe options available, I'm sure you've seen the treatment chart on Clare Rusbridge's website.

Gabapentin tends to only be effective for 6-8 hours so four times daily can be helpful. Teddy was on 900mg daily which is the maximum [and extremely high] dose.


If you go for Acupuncture make sure it is someone knowledgeable about the condition as otherwise this could cause further problems.



We hope that Luka will continue to do well for a long time yet, it's wonderful that you have been able to get him the treatment he so obviously needed.
 
I am glad that the mix of meds is working -- great news, and that gives you time to consider options as things go along. (y)

I cannot agree with Dr Kline however agree that dealing with SM is like dealing with a disability. Most define a disability as an impairment to normal activity. While this may be an accurate description for a subset of cavaliers with symptomatic SM, it is still almost always progressive and for significantly symptomatic dogs (and many will eventually progress to that point) it often eventually requires euthenisation regardless of whether one opts for surgery or meds (see Clare Rusbridge's report on this). I am not sure many on the medical side would use 'disability' to accurately sum up what sufferers of SM, whether humans or our dogs, live with. To me, and I have three dogs with condition and have worked with/spoken to several of the key researchers and to others with affected dogs for going on 8 years now) that's like describing cancer or any other life threatening, often progressive condition as a disability. For the same reasons, I could not describe MVD as a disability and I think it would be hard to find a cardiologist who would consider it a disability as opposed to a potentially life-threatening and often extremely debilitating serious illness.

Most of us with affected dogs do not live with the certainty of management options we might have with a dog with a disability. I have had animal with disabilities, such as an amputated leg, deafness, etc. My only uncerainty with those conditions was making sure the animals did not get outside off lead, Or a mild concern about some increased prospect of arthritis. With SM cavaliers, you live with a day and day out concern that today may be the day a screaming fit happens, that meds cease to help, that you need to make a rushed decision on surgery or euthenisation. You have to weigh up every day how much pain the dog is living with, despite what the medications mask and the small comfort that they bring. Plenty of humans with the conditions say drugs do very little to help with the severe headaches or the disturbing skin crawling sensations, that we may only see in our own dogs manifested by occasional scratching–and no dog can tell you whether it has an unbearable headache (those who the face rubbing signs may sometimes indicate some degree of that). Human neurologists have very few tools to help people live comfortably with this condition, and as with the dogs, surgery often has to be repeated. If we choose not to have surgery for our dogs, we live every day with the concern that this has been the wrong decision. If we do the surgery, we live every day with the worry that this has been the wrong decision. Whatever the choice, you fear that it will eventually result in a dog needing to be euthanized earlier than what would have been the case if you hadn't intervened in the way that you did. :( of course, you do put it to the very back of your mind, but I have lived with this with one dog for over six years, and that worry is always there and increases over time rather than recedes. Any additional MRI almost always shows that a syrinx has grown.

I just cannot see how anybody could describe SM as a disability. :confused: Perhaps it is just a matter of semantics amongst neurologists, but using the word “disability” implies a fairly static, understood condition with some ease of management and care options that most evidence would suggest simply is not the case, especially for dogs with significant syrinxes and early onset symptoms. I guess the main concern for me is that as a term it gives a false sense of security that even those with dogs with few symptoms or a small syrinx just do not have, because you're always living with the prospect of progression–which can often be sudden and swift.

I am curious to know if others with affected dogs see it as a disability?

I think you are getting caught up with semantics, I think she meant to say it as a comfort that while his illness is going to end his life prematurely at some point in the future, the care management aspect is no different than someone who needs accommodations.

It didn't offend me, as someone who was in her office crying hysterically before, I think she was just trying to say that there are several options before surgery. She is very for Rusbridge's approach in treatment and mentioned I should research her writing on SM, which I have.

When you have a disability you always live with the prospect of progression.
 
I am quite shocked to hear SM described as a disability :( - I would not view it as such other than as a specific part of the condition if they are demonstrating lameness and neurological defects but these can be changeable too - and obviously they can become unable to access furniture or stairs and steps.

As someone who lives with a disability, and also has a very painful facial nerve pain condition, I am perhaps well placed to know the difference and how I feel about the two separate conditions. I totally agree with Karlin, she has written far more eloquently that I would have managed and expresses how I feel. Like Karlin, I have also owned dogs with disabilities and also multiple dogs with Syringomyelia, which does feel like a timebomb - it is an emotional rollercoaster and you are constantly watching for changes.

With disabilities it is difficult at first whilst you make changes to your environment, lifestyle and management [safety being the primary concern], but once these are in place there is little change and not the same emotional burden [nor generally the financial one]


Perhaps you would be kind enough to go back to Dr Kline with our comments - I really do not feel that this is something that should be being said to guardians of dogs with SM.


Management - often a cocktail of drugs is far more effective for management. I personally would be reluctant to give Rimadyl long term there are other safe options available, I'm sure you've seen the treatment chart on Clare Rusbridge's website.

Gabapentin tends to only be effective for 6-8 hours so four times daily can be helpful. Teddy was on 900mg daily which is the maximum [and extremely high] dose.


If you go for Acupuncture make sure it is someone knowledgeable about the condition as otherwise this could cause further problems.



We hope that Luka will continue to do well for a long time yet, it's wonderful that you have been able to get him the treatment he so obviously needed.

I really don't think she meant disability is a negative connotation. I didn't take offense to it, in a way it made me feel better to know this illness can be managed.

I didn't know a chart existed I am at the tail end of school and catching up.

He's been diagnosed for less than a month now. Obviously, I have a lot to learn still.

I don't know much about Rimadyl other than it is an anti inflammatory.
 
in a way it made me feel better to know this illness can be managed.

But this is the point (not that the word disability has any negative context): many of us find SM really isn't usually an illness that can be managed very well at all once you start to get any significant level of symptoms, and whatever the level to start with, you live in constant, justifiable worry that it will progress to the point where it isn't manageable. That is exactly what I mean about the word being misleading. Progression is unfortunately the norm for SM, and managing with meds requires increased dosages in almost every case I know plus regular revision of the cocktail of drugs, meaning lots of trial and error and neurologist visits. On Luka's meds right now: many neurologists would also have a dog on some kind of CSF reducer -- it is one of the only drugs that actually is known to be able to slow (and in very early cases of small pre-syrinxes, even to halt) progression. You will see it is one of the first things listed on Clare's treatment algorithm.

You might consider a second opinion. Each neurologist has their own approach, but the level of damage to Luka's spine already indicates the disease has progressed very rapidly.

It isn't that there is anything wrong about opting for medications, but in such a context I find it especially hard t see how medications could be described to be managing a disability; the risk is that with continued progression they would only be able to provide palliative care and a closing window may exist in which surgery can do anything, if it was to be considered an option. Acupuncture does sometimes help to manage pain but again will not halt progression and as Nicki says, it is adviseable to find an acupuncturist familiar with SM.

There are indeed dogs with SM that can be managed on medications alone for a normal or close to normal lifetime; but these tend to be dogs with small narrow centrally positioned syrinxes with few symptoms.
 
Luka's Gabapentin has been increased to 4 times a day and he gets codeine 3 times a day.

I'm curious because I don't think I've heard of anyone using codeine for SM. Is it uncommon to use this drug for SM? When my mom was in my home at the end of her life and we were working with Hospice, I remember that the drug was pretty strictly controlled though we did use it.

Pat
 
From Clare's website; maybe these will help?:

So if a syrinx is detected either by screening or because of investigation of another disease do I need to be concerned?
Syrinxes can progressively expand and a dog which is asymptomatic in early life may eventually become painful. However a narrow symmetrical (less than 3 millimetres wide) syrinx or central canal dilation is unlikely to develop a pain syndrome. Some owners opt for intermittent neurological examination or even repeat MRI to assess for progression. The real significance of asymptomatic dogs is that their offspring appear to have a higher chance of being affected and more chance of being symptomatic. For this reason breeders are advised to MRI screen their breeding animals.

Pain is positively correlated with syrinx width and symmetry i.e. dogs with a wider asymmetrical syrinx are more likely to experience discomfort, and dogs with a narrow syrinx may be asymptomatic, especially if the syrinx is symmetrical. Dogs with a wide syrinx may also scratch, typically on one side only, while the dog is walking and often without making skin contact. Such behaviour is often referred to as an “air guitar” or “phantom” scratching. Dogs with a wide syrinx are also more likely to havescoliosis (curvature of the spine).yringomyelia may also result in other neurological deficits such as weakness and poor coordination and slow correction of abnormal limb position.

What drugs are used to treat syringomyelia?
Medical management of syringomyelia is based on anecdotal reports as there has only been one clinical trial assessing the effectiveness of a novel neurogenic painkiller and results from this trial are still being analysed.
Typically the first drugs used for treatment of CM/SM are (unlicensed) drugs that reduce CSF pressure e.g. furosemide, cimetidine or omeprazole. The principle of this therapy is that reducing CSF pressure reduces the driving force contributing to the syringomyelia. Some owners report a reduction in signs of apparent pain.
If the pet is in pain then a non steroidal anti-inflammatory drug (NSAID) is often prescribed e.g. firocoxib, carprofen or meloxicam. This may be in addition to one of the drugs above.
For dogs with signs of neuropathic pain (e.g. severe pain; increased sensitivity to normally non painful sensation such as touch; and scratching behaviour) an (unlicensed) neurogenic painkiller is more likely to be effective for example gabapentin orpregabalin.
Corticosteroids are an option if pain persists or where available finances prohibit the use of other drugs however as these drugs can have more long term side effects the author prefers to avoid them if possible.

Are there any alternative therapy options?
Anecdotally, acupuncture and ultrasonic treatments have been reported to be useful adjunctive therapy in some cases. In some cases chartered physiotherapists are able to help alleviate signs. www.acpat.org, [email protected] . Care should be taken however as the response to these treatments is very individual and some dogs may actually be more painful afterwards. Spinal manipulation is contraindicated.

What is the prognosis for my dog?
Unlike mitral valve disease, CM/SM is rarely fatal however this does not diminish the importance of this painful disease and a significant number of dogs are eventually euthanatized as a consequence of uncontrolled pain. This is more likely in dogs with a wide syrinx and/or with first clinical signs before 4 years of age. Study of a small case series (14 Cavaliers) managed conservatively (eg with medications) for neuropathic pain suggested that 36% were eventually euthanatized as a consequence of uncontrolled pain. However 43% of the group survived to be greater than 9 years of age (average life expectancy for a Cavalier is 10.7 years). Most dogs retain the ability to walk although some may be significantly tetraparetic and ataxic.
 
I'm curious because I don't think I've heard of anyone using codeine for SM. Is it uncommon to use this drug for SM? When my mom was in my home at the end of her life and we were working with Hospice, I remember that the drug was pretty strictly controlled though we did use it.

Pat

Here in the states they put codeine in over the counter cough syrup. In people they give codeine easier than vicadin and percocet. Tylenol 2, is codeine and acetaminophen and usually drug of choice for dentist patients. So it's controlled but not as controlled as class 2 narcotic such as percocet. (oxycodone) It's just an all around pain med, and I don't think it's ever given long term??? (meaning several years) as I think tolerance builds up fast!!
 
Um...Atlanta, GA is in the states! But you know what, I was actually thinking of morphine when I wrote that post rather than codeine - morphine is what was so controlled when used for end of life palliative care, and that is the drug that was given to my mother. I did read up on both codeine and morphine in Plumb's Veterinary Drug Handbook.

But again - I don't think I've ever seen codeine or morphine listed as drugs used for SM - and I'm curious whether anyone else has had their neurologists prescribe these opiates. I've seen gabapentin and pregabalin used of course, a whole host of NSAIDS, steroids and Tramadol - and I think that's it. Have others used codeine or morphine for SM pain?

Pat
 
Um...Atlanta, GA is in the states! But you know what, I was actually thinking of morphine when I wrote that post rather than codeine - morphine is what was so controlled when used for end of life palliative care, and that is the drug that was given to my mother. I did read up on both codeine and morphine in Plumb's Veterinary Drug Handbook.

But again - I don't think I've ever seen codeine or morphine listed as drugs used for SM - and I'm curious whether anyone else has had their neurologists prescribe these opiates. I've seen gabapentin and pregabalin used of course, a whole host of NSAIDS, steroids and Tramadol - and I think that's it. Have others used codeine or morphine for SM pain?

Pat

Pat, I was thinking the same thing when I read codeine. Actually tramadol is controlled but that's not my question because I've never heard of codeine being prescribed.

Ella took tramadol everyday, which some say is only prescribed after surgery. I asked her neurologist and vet about long term on tramadol because of some concern, but I wonder if codeine is newly being prescribed?

Sent from my Droid using Tapatalk
 
I'm having trouble with the forum and posting long responses. Just wanted to say Karlin explained how exactly I felt and most others. Its a roller coaster and I'm getting tears thinking of it. Its so new to you and like Karlin said, there are always changes, questions about are you doing the right thing.

Just to hear disability concerned me. Karlin said it best. Also what are your expectations with acupuncture? Are you thinking instead of surgery?

Sent from my Droid using Tapatalk
 
I'm curious because I don't think I've heard of anyone using codeine for SM. Is it uncommon to use this drug for SM? When my mom was in my home at the end of her life and we were working with Hospice, I remember that the drug was pretty strictly controlled though we did use it.

Pat

It's a painkiller and FDA controlled.
 
Here in the states they put codeine in over the counter cough syrup. In people they give codeine easier than vicadin and percocet. Tylenol 2, is codeine and acetaminophen and usually drug of choice for dentist patients. So it's controlled but not as controlled as class 2 narcotic such as percocet. (oxycodone) It's just an all around pain med, and I don't think it's ever given long term??? (meaning several years) as I think tolerance builds up fast!!

I think you are mistaken, codeine in cough syrup is not over the counter in the United States. Every form of codeine is subject to FDA regulations.
 
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