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What might it be like for our dogs? Teen with Chiari

Karlin

Administrator
Staff member
This is a very insightful article into what humans experience with the condition.


http://www.pe.com/localnews/corona/stories/PE_News_Local_D_brain09.3aa6af4.html


Details correlate closely with what SM dogs owners see in their own dogs, including the coming and going of symptoms. And it's a reminder that probably most dogs suffer a lot from headaches which owners cannot perceive and hence a lot of the true pain of the condition is not on view, perhaps leading people to not get the medications for a dog that would relieve such pain. There is a research project at the moment to try to find a better way to assess pain in SM dogs.
 
One thing I guess I'm not clear on, and probably less clear on after reading the article, is the surgery. I mean, I know there is no cure, but it talks about him continuing to deteriorate. Is that only if he doesn't have the surgery? And if he's starting to have damage to the spinal cord, and they are now looking at surgery, isn't it now SM?

Thanks for posting the link Karlin? What a horrible disorder.
 
Well, there are a couple of things to keep in mind. 1st of all is that researchers already know that CM/SM in Cavaliers and other dogs is not exactly the same as Chiari and SM in humans. In dogs, the malformation alone only rarely seems to cause symptoms, whereas in humans, Chiari alone is by far, the principal cause of symptoms which can be worsened by the development of SM on top of Chiari malformation. The malformation is also different in dogs, which is why many of the canine researchers agreed to use the term Chiari-like malformation. The human brain is also different in structure to a dog brain so the anatomy of cerebellar herniation is a bit different (dogs do not have cerebellar tonsils, which are the part of the brain that herniates in humans). There are different types of Chiari malformation in humans, whereas there is just one in dogs. Here's some more information and images of Chiari malformation in humans: http://emedicine.medscape.com/article/406849-overview

Also, dogs walk on 4 legs and carry their head and neck horizontally, whereas humans walk upright and carry their head and neck upright. This difference seems to contribute to some differences in response to surgery between humans and dogs but is not very well understood.

On this article in particular, I think what the writer is saying but perhaps not fully understanding, is that this child has begun to develop SM as well as Chiari malformation, and that is why the doctors wish to operate.

On deterioration after surgery–in dogs as well as humans, the surgery only seems to stop problems for a time and it is very typical for humans to need decompression surgery more than once–so yes, the article is noting that he will almost certainly continue to deteriorate over his lifetime. But you also have to remember that humans live 8 times longer on average than the average Cavalier–so there is much more time for problems to develop in humans over time. Still, some level of deterioration was seen in at least half of the dogs in a follow-up group for decompression surgery in an informal survey written up as a paper by Clare Rusbridge. I am very skeptical that the mesh surgery will have much better results when looked at over a long period of time–e.g., the lifetime of the average dog. That said, “deterioration” can mean many things from a return of some mild scratching on down to the return of severe pain that ends up with the dog needing to be euthanized. I think very few of us would consider the surgery a failure if a severely affected dog that was experiencing significant pain ends up after surgery meeting gabapentin for some mild scratching. Most of us would consider that a successful outcome over the life of the dog. Clare's paper found that more dogs treated with medications alone ended up being euthanized but that many with decompression also were euthanized for pain eventually, too.

But as the article notes with humans–as is also true for dogs–surgery is not a cure. It is an alternative that can give dogs that otherwise might have a very short lifespans, a medium to full term lifespan instead and many people will feel it is worth doing for that reason. Others will feel the risk of failure and the stress of the procedure or the cost of the procedure or the already severe symptoms of the dog mean surgery is not an option for their dog. It is a very personal decision, but any one opting for surgery needs to be aware that they need to take any claims that surgery will leave dogs medication free for life, or free of all complications, is at this point IMHO nonsensical. Data on the surgeries generally is very thin and in some cases nonexistent for anything further than a couple of years of postoperative evaluation. And, too, some of the claims do not fit with what I see people writing about on discussion boards or hear back from people who have had the various surgeries.

That is why I have such a degree of skepticism over claims about one technique being significantly better or having medication free results for dogs. This skepticism has been increased by seeing researchers who initially made these claims, revise them over time to concede that they are having higher proportions of dogs needing medication etc (to me it always seemed very premature to make such claims based on only about a year of postop evaluation). I also am aware of a couple of dogs that have had serious problems or significant deterioration after the mesh surgery, for example, in these do not seem to have been included in research reports. Almost every dog I know of that has had the mesh surgery is on some form of medication afterwards, generally gabapentin but in some cases, an array of painkillers as well–and yet the official figures are that the number needing medication is trivial and I just don't understand how there can be this variation. perhaps it is a case that it is mainly the people who have problems that highlight them, but I honestly don't think that this is the case as I've come across so many people over the years who have had a range of these surgeries done on their dogs. I personally believe that many owners whose dogs end up with difficulties post surgery, or which go back on medications, do not report these things back to the original neurologist (for any range of reasons, but this would not be uncommon, just as most people do not return to their breeder to inform them of serious health problems their dogs have also for a range of complex reasons). So therefore, a lot of dogs that go on to have problems, might not be included in a researcher's small, postop research sample Or even inform their general notion of how successful a procedure is. I think it is really important for people who have had surgeries to keep their neurologist informed on any need to return to using medications or to report any deterioration so that statistics better reflect real-world results.
 
Another Story of a Human with CM/SM and owner of a Cavalier

I too have heard people say surgery is a cure. This is a very raw subject because some people feel that Cavaliers die from MVD, but not from SM. Surgery can hopefully relieve some pain and maybe hope to stop progression. There is NO CURE FOR SM. I feel in some Cavaliers, surgery may be the best option but I have rarely heard of any that do not have to take some medication.

Can I please add these articles? When my cousin went to a prayer group and prayed for Ella with SM, a mother said that her daughter had this. She explained surgery and said her daughter had heard of Cavaliers with SM and felt that she could relate. This article appeared in Royal Spaniels but I find it interesting she worked with Dr. Marino and also how she can make her living and Cavalier with SM more comfortable (as best as can be) knowing what things hurt her. I like part 2.

http://twolittlecavaliers.com/2011/01/syringomyelia-awareness-the-human-side-of-sm-cm-part-1.html


http://twolittlecavaliers.com/2011/01/syringmyelia-awareness-the-human-side-of-sm-cm-part-2.html
 
It also would be nice if you are in the USA, to join the walk. I will look into details because I have contacted one person before. I joined some human forums because Cavaliers can not speak and I wanted to know what it was like. I remember when House came on with an episode of CM. Everyone was real excited to FINALLY have some type of awareness. We think of our Cavaliers or other dogs but people living with this condition could use support also whether it is just to say hello. At one time, I read that Cavaliers might show some light with research, even if this isn't going to be the same, it is something we can learn from each other.
 
It also would be nice if you are in the USA, to join the walk. I will look into details because I have contacted one person before. I joined some human forums because Cavaliers can not speak and I wanted to know what it was like. I remember when House came on with an episode of CM. Everyone was real excited to FINALLY have some type of awareness. We think of our Cavaliers or other dogs but people living with this condition could use support also whether it is just to say hello. At one time, I read that Cavaliers might show some light with research, even if this isn't going to be the same, it is something we can learn from each other.

Good idea to join human forums... I was wondering in the article it says that 20 percent stay the same or worsen after surgery. Is it the same for dogs? When they say worsen does it mean worsen because of the surgery?? I always wonder if its actually possible for surergy to affect progression negatively.
 
Good idea to join human forums... I was wondering in the article it says that 20 percent stay the same or worsen after surgery. Is it the same for dogs? When they say worsen does it mean worsen because of the surgery?? I always wonder if its actually possible for surergy to affect progression negatively.

I think its hard to compare like karlin mentioned above. For me, success is relative. I would say unsuccessful definately if the dog had complications from surgery. How does one know what results would have been on medication alone? Its a tough decision.

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Thanks Karlin and Anne. That answered a lot of questions. Since not as many people report back to the surgeon, it doesn't sound like we will ever get accurate numbers on our Cavaliers, and return of symptoms, and at what stage.

I pray I never have to go through this with Claire. I've had two dogs with weird disease or disorders, and it can be so heartbreaking when no one has answers.

Thanks again for sharing. I pray that someday very soon we can figure out a way to stop this disorder in our sweet Cavaliers.
 
Thank you for posting these, I will have a look through later, but I'm confused about this Karlin

In dogs, the malformation alone only rarely seems to cause symptoms


because of this thread http://www.cavaliertalk.com/forums/...e-CM-only-not-SM&p=377899&posted=1#post377899

25% of cavaliers with SM symptoms have CM only, not SM

That's according to a research sample of clinically affected, scanned cavaliers in the new research paper out from Clare Rusbridge et al. This is the same one Rod notes in an earlier thread about 76% of these dogs also had further syrinxes lower than the C5 vertebrae (and thus dogs with syrinxes are likely to be worse than a mini scan will show).

Abstract below, but this excerpt from the paper interested me as it suggests a hitherto unexpectedly large number of dogs with clinical signs of SM (all dogs in the study had clinical signs)-- one in four!!! -- have CM only -- which suggests people with such dogs really need to be treating it AS WITH SM, not attributing the problem to some other likely cause (something vets also need to recognise):

The median age of the dogs included in the study was 5 years (1.2–10.8 years). CM was present in all patients. None of the dogs showed compressive craniocervical pathology other than CM. There was no evidence of SM on MRI in 12/49 (25%) dogs. In all dogs with MRI evidence of SM (37/49; 75%), SM was present within the C1–C4 region (Figs. 2 and 3). Of those dogs with SM within C1– C4 region, 76% (28/37) also had SM within the C5–T1 and/ or T2–L2 regions, but only 49% (18/37) had SM within the L3–L7 region.

Abstract
Chiari-like malformation (CM) and syringomyelia (SM) is an important disease complex in the Cavalier King Charles Spaniel (CKCS) but data about the anatomical distribution of SM along the spinal cord are lacking in veterinary medicine. The objective of this study was to define the anatomic distribution of SM in CKCS clinically affected by CM/SM. Magnetic resonance imaging (MRI) of the brain and the entire spinal cord of 49 dogs was performed and different morphological parameters compared.

Syrinx formation was present in the C1–C4 region and in other parts of the spinal cord. The maximal dorsoventral syrinx size can occur in any region of the spinal cord and the total syrinx size was positively correlated with age. Seventy-six per cent of CKCS with a cranial cervical syrinx also have a syrinx affect- ing more caudal spinal cord regions. MRI restricted to the cervical region may underestimate the extent of SM and the severity of the disease process in the majority of dogs.




it seems to indicate there are many who have symptoms "just" from CM and I know we have a few on the board - I've personally known a few dogs who scanned with no syrinxes but were symptomatic.
 
On the 20% figure–this is actually a well understood failure rate for the surgery in dogs too -- and that is only the initial failure rate. About 20% will decline within the 1st year. It is listed on Clare's page and has reoccurred across various research papers by others as well. I really recommend anyone interested in SM, or anyone with an affected dog, to read Clare's FAQ. :thmsbup:

From Clare's site:

How successful is surgery? Cranial/cervical decompression surgery is successful in reducing pain and improving neurological deficits in approximately 80% of cases and approximately 45% of cases may still have a satisfactory quality of life 2 years postoperatively (Rusbridge 2007). However surgery may not adequately address the factors leading to syringomyelia and the syrinx appears persistent in many cases (Rusbridge 2007). Much of the clinical improvement is probably attributable to improvement in CSF flow through the foramen magnum.

On the 25% figure == thanks for that reminder Nicki– you are right, I need to change from describing this as “rare”. I had forgotten about that paper earlier this year which showed this far more significant percentage. I am very glad that you brought this up, because I'm in the midst of doing some work on SM information and need to include this in.

My understanding would still be that dogs with CM only, rarely show more severe symptoms. I will see if I can get some more information from Clare Rusbridge. There's still a reverse of the situation with Chiari malformation and SM in humans, however–where my understanding is that the vast majority of people with symptoms have Chiari, and SM is an additional complication for some of them. I will see if I can clarify that. Given what was initially understood about dogs, we have come along so much further in the past 7 to 8 years that I've been following the issue and research. I know people often feel we know so little, but actually we know vastly more then we did in, say, 2003 when I was trying to get information on the condition.

I know we would all like more answers, but the answers will not be forthcoming unless money goes into research and in particular, if breeders do not scan dogs for research. There are still very few scans coming forth from breeders into the research programs, and getting scans from older Cavaliers, especially males and most critically some stud dogs with pedigrees that connecting to so many of the well-known lines, would just be so important for trying to move understanding forward. I wish the international clubs would get behind these initiatives and create funds and create even more importantly, awareness programs around these conditions! There is still a dearth of information on most national club websites, and very little organized support for SM research or to try to get breeders to understand the significance of scanning older dogs. I hope some breeders who have been involved can convince others and their clubs to be more proactive in this area.
 
Thanks for posting all of these reads, they have really got me thinking as well as opening my eyes. I always say "I just wish Brooklyn could talk!", I guess our closest thing to that is humans.

As with any surgery, human or animal, there are always risks and nothing is ever 100%....I know this from personal experience, going in for a "routine surgery" last year and coming out with severe complications that will affect me with pain and walking for a lifetime. That's something I think will always be wondered and can only be personally answered, and it is unfortunate that our pups can't weigh in on it. There are so many questions...do I? don't I? Will it be worse if I...? Will it be better if I...? What if? Why didn't I? There are never going to be answers to those questions. Even if this was a "cure" or became "routine", it is still surgery and any surgery poses great risks that have to be weighed out, because even if it is a 1 in a million chance that there will be a complication...there is that 1.

I think we were paired with our own individual dog(s) for a reason and they trust us and give us these decisions to make for them because they know that we will do the best we can for them with what we have. We will give them surgery if we think it will help, and we will stick to medications if our gut tells us to do so. I guess that is the problem, it is so personal, such a heavy decision for a "parent" to make on behalf of another living being (our dogs). This is why all of you are so special...we are all making these decisions for our cavs on a daily basis and they trust us to research, talk and explore. They trust us to have conversations like these so that each of us, as individuals, have a tool box of information to make decisions for our dogs weighing up all these heavy "what ifs...". It is so hard, I know, to battle the "what if", but at some point life just guides us that, for whatever reason, was how the story was meant to play out.

That was a babble. Sorry! Thank you for all this reading though, it is really great to pour through and think about.
 
That's something I think will always be wondered and can only be personally answered, and it is unfortunate that our pups can't weigh in on it. There are so many questions...do I? don't I? Will it be worse if I...? Will it be better if I...

I think we were paired with our own individual dog(s) for a reason and they trust us and give us these decisions to make for them because they know that we will do the best we can for them with what we have. We will give them surgery if we think it will help, and we will stick to medications if our gut tells us to do so. I guess that is the problem, it is so personal,

They trust us to have conversations like these so that each of us, as individuals, have a tool box of information to make decisions for our dogs weighing up all these heavy "what ifs...". It is so hard, I know, to battle the "what if", but at some point life just guides us that, for whatever reason, was how the story was meant to play out..

I totally agree. The problem is even with results saying 20%, I believe its what one defines as successful? One would say ellas surgery was unsuccessful because she developed scar tissue. However, did it give me more time to figure out medication to help her? How would that compare with medication alone? Did it give her more time? Is the time of recovery worth the other?

All I know is before surgery she was not chasing a ball, hiding under the table, bed, anywhere, shaking her head constantly. After surgery, it was like her old self again. I started to see the symptoms return but I don't think to the point of before. So in my eyes, I would do it again. Some other people wouldn't. So personal.

I don't know if scar tissue is worse than bone or if it makes it worse but I guess we get information, make the decision when we feel its best and can't look back.

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I totally agree. The problem is even with results saying 20%, I believe its what one defines as successful? One would say ellas surgery was unsuccessful because she developed scar tissue. However, did it give me more time to figure out medication to help her? How would that compare with medication alone? Did it give her more time? Is the time of recovery worth the other?

All I know is before surgery she was not chasing a ball, hiding under the table, bed, anywhere, shaking her head constantly. After surgery, it was like her old self again. I started to see the symptoms return but I don't think to the point of before. So in my eyes, I would do it again. Some other people wouldn't. So personal.

I don't know if scar tissue is worse than bone or if it makes it worse but I guess we get information, make the decision when we feel its best and can't look back.

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Good point about the scar vs bone. See , i still think the succesrate with this surgery seems a bit of a long shot, for the seriousness of the surgery. Its the reason i am hesitating... I think 45 percent may still have good quality of life post 2 years is poor. I know that marino claims differently post 2 years. (more succesrate i believe it was 80 percent in the 2007 study?) Now does that have something to do with titanium mesh vs regular decompression? The 45 percent of dogs in claresnresearch, would they have done fine on medical mgmt? I know she claims a 30 percent euthanasia rate post 3 years on medical managament. Well cimpare to the 45 percent post 3 year op that still have good quality of life? Is that enough? I do wanna add that when a dog is seriously heading downward or suffering on meds , it can be the only shot. After all i learned about sm though i am glad to at least manage medically, even if just for a while...
 
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Good point about the scar vs bone. See , i still think the succesrate with this surgery seems a bit of a long shot, for the seriousness of the surgery. Its the reason i am hesitating... I think 45 percent may still have good quality of life post 2 years is poor. I know that marino claims differently post 2 years. (more succesrate i believe it was 80 percent in the 2007 study?) Now does that have something to do with titanium mesh vs regular decompression? The 45 percent of dogs in claresnresearch, would they have done fine on medical mgmt? I know she claims a 30 percent euthanasia rate post 3 years on medical managament. Well cimpare to the 45 percent post 3 year op that still have good quality of life? Is that enough?

I have read Dr. Rusbridge's information when I was thinking of surgery. I think I got the 20% figure from that but thought it was decompression alone. I Know Karlin and also Ella's neurologist was worried about the long term results, but since you are thinking of surgery with Dr. Marino, I would ask him. He has some published information here http://www.caninechiariinstitute.or...-chiari/handbook-for-veterinary-professionals which I bought the book. I also had Dr. Rusbridge's book and I can't remember how many Cavaliers were in that study.

I too don't think that only 15% needed medication after surgery according to his report, but this was from them being examined after a year.

"Currently, 73 of 103 dogs with MRI confirmed CLM treated with FMD with cranioplasty had at least a 1 year follow up and were evaluated. Results of our current ongoing study revealed 62/73 dogs (85%) improved after FMD and cranioplasty and needed no long term medications, with 11/73 (15%) requiring intermittent medication to maintain quality of life. Additionally, although it has been reported the majority of syrinx formations remained unchanged on visual estimation, our objective syrinx evaluation using MRI syrinx volume calculations revealed length measurements preoperatively and 6 months post-operatively in 13 of 21 dogs (62%) had decreased in both average syrinx length and volume, 29.4% and 45.6% respectively, while 4/21 (19%) remained unchanged (Fig 23). Future studies are underway to identify reasons why most dogs experience syrinx resolution while others do not, and if there abnormalities in the latter going unaddressed."

Lynn,

Since you are seriously considering surgery with Dr. Marino, I would ask the questions Karlin had and also the ones you mentioned. I would see if this is from the publication in 2007 or if there is updated information. I think someone said the % needing medication has changed, but overall the development of scar tissue is less. I can't find it but I did read scar tissue makes it worse than without. It might be in the book on the Canine Chiari Institute. You can also read Pat's transcript from a seminar where Dr. Shores talked.
http://www.cavaliertalk.com/forums/...er-Notes-from-AVMA-Dr.-Dewey&highlight=shores

However,

Since Blondie has seen Dr. Marino and that's who you are considering, it would be best to ask him directly. I'm sure we would all want to know if he has updated research.
 
This is from an e-mail and notes from Dr. Marino. I think it might be in the online book also.

"Similar to humans, about 25% of canine patients require re-operation
due to excessive post-operative scar tissue formation with FMD alone. It has been reported that worsening clinical signs associated with scar tissue impingement typically occur within 3 months of surgery. Cranioplasty offers a protective covering for the recently decompressed cerebellum and has reportedly decreased the frequency of scar tissue formation in patients after surgery to approximately 1-2%. "
 
It's also interesting to note that:

"Currently, 73 of 103 dogs with MRI confirmed CLM treated with FMD with cranioplasty had at least a 1 year follow up and were evaluated. Results of our current ongoing study revealed 62/73 dogs (85%) improved after FMD and cranioplasty and needed no long term medications, with 11/73 (15%) requiring intermittent medication to maintain quality of life."

Karlin wrote:

"That is why I have such a degree of skepticism over claims about one technique being significantly better or having medication free results for dogs. This skepticism has been increased by seeing researchers who initially made these claims, revise them over time to concede that they are having higher proportions of dogs needing medication etc (to me it always seemed very premature to make such claims based on only about a year of postop evaluation). I also am aware of a couple of dogs that have had serious problems or significant deterioration after the mesh surgery, for example, in these do not seem to have been included in research reports."

What about the 36 cavaliers that did not have a follow up? We don't know and it could be they didn't report back. Isn't he using a new technique with with both mesh and tissue now? I don't know if this has updated results.
 
I do not really want to get into a discussion of specific claims from specific places. I made the points on a general basis, and let's leave it at that. I think that some of the discussions on specific neurologists and their techniques and criticisms or recommendations are better taken off line between people, please.
 
I do not really want to get into a discussion of specific claims from specific places. I made the points on a general basis, and let's leave it at that. I think that some of the discussions on specific neurologists and their techniques and criticisms or recommendations are better taken off line between people, please.

Sorry Karlin,

Please edit my comments as you see fit.
 
The comments that are there are fine. I just do not want critiques of specific researchers as opposed to general points about various surgical techniques and experiences, but people are free to discuss anything they wish privately amongst themselves. (y)

My skepticism about how surgery is presented, is not helped by some owners being told that ALL dogs with a syrinx will suffer terrible pain or need to be euthanized within a year or 2 if they're treated with medications only :(. This is patently not the case, and I do not know how any neurologist can believe this to be true if they follow any of the research or talk to any dog owners. there is plenty of evidence from all the existing Cavalier MRI studies that older dogs with no symptoms at all scan with syrinxes, sometimes quite extensive ones. I know many, many dogs treated with medications alone that are quite comfortable on that regime, and many dogs clearly go their entire life without any symptoms or with only very mild symptoms. Given that I have 3 Cavaliers with SM, only one of which is on any kind of major medication, and that he has been quite comfortable on that for many years and will very shortly turn 8 (with the other 2 dogs being around 8 and around 5 or 6) -- I really think it is very wrong to tell owners that a dog with a syrinx, especially dogs showing few or no symptoms, must have very costly and invasive surgery. If Leo had had surgery of whatever type at a year and a half when he was diagnosed, who knows whether he would not have had scar tissue complications or other issues arise. I just think making a decision for surgery is very complex. If I had a dog with a lot of symptoms Or certain kinds of syrinx, I would probably opt for surgery especially if the dog were young. It isn't an issue of not believing in surgery; it's an issue of how some techniques are promoted and what owners are told.

I would like people to weigh up very carefully how they make decisions on treatment for their dogs–and keep in mind that there are many different opinions among specialists… so that what people are hearing regarding treatment are opinions, not any kind of definitive truth–because there is still so much that is unknown and not very well understood about treating this condition. Some specialists are very gung ho on surgery and others are more conservative. Some feel very strongly about one type of surgery over another. As has been discussed elsewhere–it's important to find a specialist that you're comfortable with and whose opinion you respect–And be aware that another specialist who is just as experienced might have a quite different view.

Bottom line– I am very cautious when claims are being made for any treatment approach, when there isn't a lot of long-term clinical analysis there yet. I look forward to more studies being done and more information becoming available over time. Better yet, I would like the day to come when there is a genetic test for this condition, and when breeders can make choices that start to eliminate this problem in the breed. If they are unable to, I really think there is a massive moral issue on whether this breed is viable if huge numbers of dogs face a future of the kind of pain that is possible with this condition (known as one of the most excruciatingly painful conditions in human medicine). This particular illness is just a huge challenge for the future of this breed.
 
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