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Blondie diagnosis... PSOM?SM? VERY strange..

Dr. Marino is an excellent neurosurgeon and if you opt for the surgery, you'd be in very capable hands. I've met him a couple of times and always enjoy talking with him. He is very passionate about the mesh approach to surgery. But he is of course a neurosurgeon, and surgery is going to always be what he feels closest to. As my father (a retired/emeritus professor of medicine) noted to me, any physician will tend to see a problem in terms of the solution they know best.

The use of titanium mesh in human surgeries is actually very common and definitely seems to prevent the formation of scar tissue. It does seem that LIVS gets very good results in terms of scar tissue using the mesh. I just don't like the complexity of this particular surgery and I would like to see a longer timeline of results before I'd be persuaded that this is superior to other approaches. The swine tissue paper published by Dr. Shores seems to get the same results with a less invasive approach, butis only looking at dogs that have had the surgery within an even shorter time period than the mesh dogs. So while it is quite promising, no one is really comparing like with like in terms of results.I should also note that LIVS has been very generous in setting up a low cost and quite comprehensive screening program for multiple dogs for breeders. I've met a couple of the people at LIVS at conferences in the UK and they are all very impressive. But I talk to a lot of different researchers and owners of SM dogs, and I would have a different view of rushing into surgery, especially if all that is there is something like a pre-syrinx.

LIVS' opinion is clearly that if something is there, surgery should be done to prevent it getting worse. I think most neurologists would wait until there are clear indications that surgery is the only choice or the best choice. In my own case, I have always waited for a point at which Leo could not be managed on medications or declined in some truly worrying way, to consider surgery. But six years later, this hasn't happened. I am happy with the decisions I have made so far, but I constantly wonder if this was the best choice for him, and the most pain free. It is impossible to know. If he started to have repeats of the screaming session he had recently on holiday in the UK–the first time he has ever done this–I would take him for decompression with Clare without hesitation. But her own advice to me was she would still not advise surgery as long as he was managed well on medications. But again, if you have a dog with a syrinx running the entire length of the spine and the dog is still fairly young, and there are signs like scratching, it may well be that surgery is likely to have the best long-term positive outcome. Every dog is an individual case. Leo is seven, has a very short but wide syrinx, and also has a grade three heart murmur. if his syrinx had been as wide as it is now when he was age 1 or two, then I would probably have opted for surgery. My hope now is that it won't get wide enough to cause him serious problems.
 
To add: there is a danger in drawing direct comparisons between human and canine CM/SM surgeries because the anatomy of dogs and humans is different, and it is already known that the surgeries affect them in different ways. All the decompression surgeries for dogs involve duroplasty at least as far as I know–I think only Chestergates in Wales was doing something more limited. But there is good evidence that removing the dura is actually what reduces the pain for dogs. It is in a very different position anatomically than it is for humans so removing it does not cause any “slump” or other issues that have been raised with the human surgery. It is actually quite a low-morbidity surgery as Claire notes on her website. As a matter of fact many neurologists feel that one of the reasons for recurrence of pain is that not enough of the dura is removed.

The human websites however are very useful for getting a general understanding of the issues with these conditions and also for getting a sense of what the dogs might be experiencing.

Weak limbs can take any of a range of forms. With some dogs they become really unstable. A neurologist can do a clinical test and know in a few minutes whether a dog is having problems–a vet and an owner would not even notice. to most people my Leo looks absolutely normal, but he would always have seemed a bit “clumsy”–sometimes he would jump up on something and fall off, for example he doesn't have very good balance if he tries to jump up into a lap. He fell off the bed when we were in the UK and I think this is probably what aggravated his syrinx and caused the pain session that he had. One thing that I have learned is I think we owners have a very hard time interpreting what our dogs are feeling regarding pain and we probably severely underestimate it, especially when you read what human sufferers go through, much of which is not the kind of pain that is noticeable to an observer. Dogs also hide pain very well, and actually LIVS did an experiment in which they video'd dogs when their owners were there and then when they were alone and the dogs would completely hide their level of pain when the owner came in to visit them.
 
Wow. That is so heartbreaking to know that they would hide their pain from us..
Just talked to Dr. Marino on the phone, he called to follow up, very nice, and talked to him about the symptoms resolving etc..
He still thinks Blondie should have surgery. "With a 90 percent syrinx" he said "there is really not much room left till everything compresses"
I think that is the strongest point pro-surgery as well.
I mean, if I somehow know the syrinx wouldn't get worse.. But since this has probably progressed overtime, and slowly, i would assume it will.
And there isnt much room left. Dr. Marino also knew I was going to see Dr. West monday. :) lol
I asked him if it was true that wide, short syrinxes cause more symptoms then long ones and he absolutely denied that. lol. He said "is that out there on the internet???" I said "yeah". I'm so glad that Leo has managed. That is really good news to hear... Poor guy fell of the bed. Blondie rolled of it once too. She sleeps on her back, paws open, and snored and rolled her way of it..... :p
 
I dont have ANY experience with any of the practices described on here BUT at the end of the day they are all trying to run a business and surgery is BIG business!

I remember when Ruby was diagnosed with Luxating Patella- the vets first comment was "we should do surgery". I automatically said no and that Id rather do Hydrotherepy and see how that goes. Got a funny look! Over a year on she hasn't had it slip in 12 months and her muscle mass is amazing.

Even though these surgeries have our pets interests at heart- they are still trying to run a business and make money from us.
It is very hard to know when to trust and when to follow your heart and soul.
I tend to follow my heart and I truely beleive that if dogs live for the momment then so should I!
 
The human websites however are very useful for getting a general understanding of the issues with these conditions and also for getting a sense of what the dogs might be experiencing.
Click to expand...

The Ann Conroy Trust website is very interesting. I have attached the link of a personal story, Jill Redpath shares her experience and why she has a CKCS to thank!
If you go to the home page and click on personal stories, it gives you a sense of what our dogs are suffering.

I have an article from the Ann Conroy magazine, "My Chiari Experience" by Cerys Carlson which is very relevant. I can't find it on the internet but will scan and post it a little later.

http://theannconroytrust.org.uk/jill_story.htm
 
Just to put my two cents in here - Riley had decompression surgery with the titanium mesh implant 2+ years. It was done by Dr. Michael Podell in Northbrook, Illinois. I don't know how wide her syrinx was, but it covered almost her entire spinal cord. Two neurosurgeons gave the exact same diagnosis and recommendation for surgery as her best chance for a quality life. I do not know if Riley was in pain before her surgery. She never exhibited any signs that I interpreted as pain. She never scratched, never whimpered, never shied away from any touch. Her symptoms were muscle weakness and severe imbalance issues which were worsening. Gabapentin and prednisone given to her before surgery had absolutely no effect on her symptoms. Since her surgery, she is managed on 5 mg prednisone and denamarin to protect her liver and she is doing so well, she is like a new dog. I have said in other posts that she will never be normal, but I am so thankful that she had the surgery. For her it was the right decision. That doesn't mean that I didn't agonize over the decision at the time - wondering whether I had shortened her life, etc. But, I think we as humans have a tendency to always second guess ourselves. I am thankful, that for Riley, I made the right decision. The surgery was hard and the recovery long and difficult. Dr. Podell's recovery differs from Dr. Dewey's as he does advocate crate rest for 8 weeks with only 4 five minute toileting breaks a day which have to be on a leash as he doesn't want them to run or jump - and she will always be on medication, which also differs from Dr Dewey's claims. So, while Riley's surgery was a rousing success story, I do know that surgery is not for every dog and it is a very personal decision and is not one to be made lightly and nobody should judge anyone else's decision. And as I've said before, and Karen just said, surgeons will typically recommend surgery. That's their business. Doesn't mean it's wrong, but it's an important point to keep in mind.
 
I asked him if it was true that wide, short syrinxes cause more symptoms then long ones and he absolutely denied that. lol. He said "is that out there on the internet???" I said "yeah".
Click to expand...

Maybe it is the way you phrased this to him? Dr Marino will be familiar with the paper presented that shows that short and wide syrinxes generally cause more pain than long and NARROW syrinxes. Long and WIDE syrinxes and especially lopsided syrinxes of either type cause more pain. Dr Marino, like me, was at the presentation for this in London at the first CKCS SM Symposium held at the Royal Veterinary Ciollege, and I am sure he would agree that this has been demonstrated to be a direct correlation with levels of pain. Again, this is all on Clare's FAQ -- not sure if you have had the chance to go through this yet? The summary of this paper is also on www.smcavalier.com, my own website -- it was Nick Jeffery's presentation, now a peer-reviewed and published paper.

Carol Fowler's www.cavaliercampaign.com website summarises it like this (her content has been checked for accuracy by Clare Rusrbidge and other researchers:

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 have scoliosis. In many cases the scoliosis slowly resolves despite persistence of the syrinx.
Click to expand...

I will say: I have yet to hear of a single case in which LIVS has not recommended surgery -- if a dog has any symptoms, or even a pre-syrinx forming, they to my knowledge have always recommended surgery. So if you want any other viewpoint, you will need a second opinion from a neurologist who is less surgery-oriented. That is what several of us have been trying to suggest, giving you some names of people to consult. If you feel comfortable with the idea of surgery, then of course this probably isn't worth taking time to do.
 
Found the summary of the paper which clearly found in a large sample that pain correlated to WIDTH of syrinx not length, though length of course can produce pain (any syrinx can produce pain/deficits as can no syrinx, in some dogs with CM... how all this happens is not clearly understood but *in general* it is better to have a narrow and longer syrinx than a short and wide one, or a long and wide one. Lopsided is worse than evenly centred.

These are my notes; on smcavalier.com there are links to the abstract and original slides.

But that said -- as I and others have said we cannot give you a diagnosis on your particular case or MRI. If the syrinxes fill 90% of the spinal cord, that is pretty severe. At the same time -- if in your shoes I would still want a second opinion.

Lovecavaliers: Clare does not charge much for a second opinion. I will find the info for you in a sec. Personally I would not even consider surgery with only a presyrinx. Again this is just my own opinion and this is a highly personal decision. I think colour of bandage is just related to what is in the office -- i have had red, pink, blue, white and yellow on various dogs,. I don't think most vets match it to gender of the dog, though maybe some do. Pink is pretty common. :)

From my SM website:

Paper 5: Association between spinal cord dorsal involvement and pain in syringomyelia secondary to canine Chiari malformation
Nick Jeffery, BVSc PhD CertSAO DSAS (ST), DipECVN, DipECVS, FRCVS
Abstract
Slides

This study was designed to test the hypothesis that pain associated with SM is related to spinal cord dorsal horn damage, and look at the relationship between pain and syrinx dimension.

CM/SM Pain:

* Commonly localized to head or neck
* May be difficult to define or intermittent
worse at night
when first getting up
may vary with atmospheric conditions
when excited
related to posture
* May be sensitive to touch
* Can scratch at shoulder, ear, neck or sternum
typically one side only
whilst moving, often without skin contact

Is pain associated with damage to the dorsal horn? To find out, researchers need to correlate signs of pain with syrinx dimension. The top part of the spinal cord is where pain is processed.

Looked at the size and location of syrinxes in 85 CKCS from measurements made over a two year period (60 from breeder screening programs). 11 dogs were excluded leaving 74, 60% female. Images were coded and viewed independently by three of the authors of this paper.

Is there a syrinx? If so:
* measured the maximum width of the transverse image (any angle)
* is there dorsal or ventral asymmetry?
* if syrinx is asymmetrical, how long was the asymmetry (the reason to look for this is that it has been associated with pain in humans with SM)

Results:
* 55 of 74 CKCS had syringomyelia
35% SM were painful
27% SM had scratching behaviour
* Comparison pain SM and no pain SM
No correlation sex or age
Strong association with maximum syrinx width (p<0.0001)
Dogs in pain - mean maximum width 0.58cm
Dogs without pain - mean maximum width 0.32cm
95% of CKCS with SM greater/equal to 0.64cm were painful

There is a very strong association between maximum syrinx width and pain:

* Asymmetry of syrinx is only found in the dorsal half of the spinal cord, and is associated with pain. 79% of dogs with pain had such a syrinx.
* syrinx length is also associated with pain.

Results – dorsal asymmetry:
* Syrinx asymmetry only found dorsal half spinal cord
* Dogs in pain more likely to have dorsally asymmetrical syrinx
15/19 (79%) - dogs with pain
16/33 (49%) - dogs without pain (p=0.0419)
* Mean length of asymmetrical syrinx
5.15cm - dogs with pain
2.8cm - dogs without pain (p=0.0039)

But the association of length with pain is not significant when correlated with width. The strongest predictor of pain is syrinx width.

Disordered neural processing in the damaged dorsal horn is a likely consequence of SM and can cause neuropathic pain that often responds poorly to conventional analgesics.
Clinical significance:
* Syrinx width strongest predictor of pain
95% of CKCS with SM greater or equal to 0.64cm are painful
* SM likely to cause neuropathic pain
Signs of SM suggest
Dysaesthesia - unpleasant abnormal sensations
Allodynia - pain due to a stimulus that does not normally provoke pain e.g. simple touch
Hyperalgesia - increased response to a painful stimulus


Q&A:
* Dogs tend to scratch to the side of syrinx asymmetry. This is due to an inbalance in input to the thalamus
* Doesn’t think it is possible to pick out heads more likely to have SM
_____________
Click to expand...
 
Hey Karlin. I have read all the information on Clare's website last week! Very interesting.. One thing I saw on her website is that her surgery dogs are not crate bound. There seem to be many opinions on activity level. (very restricted to just restricted or moderate acivity)
And yes.. maybe Marino did hear me wrong or maybe I phrased it to him incorrectly. However; I clearly asked; "Isn't it true that short and wide syrinxes can cause more symptoms than long narrow ones" Maybe it is the word "symptoms" that threw him off. Maybe "pain" should've been the word?
And yes, I have taken the advise to go see a neurologist that is way less surgery oriented on Monday. That way, I can get two sides of the story.
I'd like to get a clinical exam from him and his point of view.
If it s possible to safely postpone surgery till any symptoms show up that clearly show she is distressed or has pain or balancing issues, then I will most likely go that route. Once again; IF.
It is so nice to hear that Riley's surgery has been a success. If Blondie would show symptoms like weakness and balancing issues I would most likely not think twice. With just the head shaking (all day) and scratching at her ears once in the morning (both of which im not sure are SM or PSOM related symptoms) after waking up, I'm hesitant to rush into surgery. Ofcourse I wont know for sure , like Karlin said, she doesnt have issues with weakness until a clinical exam rules that out.
I know they say the earlier the surgery, the most chance of success, but I assume that when the symptoms I saw before reoccur and it's not PSOM related, and I go ahead with surgery right away, that it wont be too late.
In that case, she would most likely be at the point where Riley was.
The syringe is already almost all the way down her spine, I am just missing any serious enough symptoms as far as I know. And I am stressing the as far as I know. until I get a clinical exam.
I would like to get a clear neurological clinical evaluation from the other doctor (since this was just part of all the tests done at LIVS, they never took the time too explain their findings of a clinical exam..) It is very possible I am underestimating her symptoms right now. And ofcourse Dr. West may still recommend surgery right now as well, it's so hard to say right now...
 
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In addition to my post above, I wanted to add my friend , who has neurological problems herself, told me. She said" you'll be fine, until you get something like an ear infection, and that will trigger your symtoms and make them worse"
I wonder what the possibility is of PSOM triggering SM symptoms to come out.
Some food for thought, that's all. :)
 
Yes I would say your friend is right -- I have a family member with severe neuropathic pain and almost anything from a secondary illness to exertion can trigger more severe pain sessions. :(

I didn't realise you were seeing 90% of the spine filled with syrinxes, which is really extensive. I'd want a second opinion -- mainly because you have had problems resolve with the PSOM procedure -- but in a younger dog like Blondie, with that much of the spine filled with syrinxes, surgery may well be what you want to do.

Maybe Dr Marino doesn't agree with the existing research on pain and syrinx width. However, I've not seen any other research though that would indicate this study is wrong.

Just as further food for thought, there have been a couple of studies done involving MRIs on dogs that were *clinically* free of symptoms, of various ages. In one study that i know of, some of these dogs are up to age 10. In these studies, at least a quarter and up to over half of dogs in various groups were found to have SM when scanned. So it is definitely not the case that dogs with syrinxes go on to have pain or even any clinical problems detectable by a neurologist. While the focus of such studies has been to point on the high level of incidence, another angle is that these samples clearly show that assumptions that dogs with a syrinx or a pre-syrinx are going to progress into a painful state is simply untrue. No dog should have to live with a syrinx but at the same time I cannot understand how, based on such study samples, anyone can say there's any certainty of pain or disability, or that problems cannot be medically managed for an otherwise normal lifespan.
 
Hello Karin, yes her syrinx covers 80 to 90 percent of her spine. That's a lot. Dr. marino says it's been building so slowly and that's why the symptoms aren't as severe. In response to my pain/width question he actually referred to that. What I think he meant is that long, narrow syrinxes take a long time to build therefore, to him, it was a matter of size of the syrinx vs. how fast it formed.

It is very odd that a dog with such a long syrinx is running around like crazy. She dances on commands. Spins cirkles and hops on her hind legs (on command) , and yes, after the PSOM was drained, the symptoms resolved, weither they were PSOM symptoms or SM triggered by the PSOM.

As for the study; it would be VERY interesting for me to find out if any of those older, asymptomatic dogs had very long syrinxes. Actually, finding out more about that study would be useful for anyone with a dog that has SM....
 
Dr M. gave an interesting talk at the Rugby SM conference in which he showed a cavalier with a spine full of syrinxes and noted that if a dog had had them occur suddenly, say due to a head injury, the pain would be almost impossible to bear. But because they develop slowly in cavaliers generally, the dogs adjust to the pain (that is why some neurologists -- believe that scoliosis, curving of the spine, tends to show in young severely affected dogs they curve their spine to try to take pressure off the affected area -- then often goes away as the dog adjusts to tolerated the pain burden :( ). That is definitely why I would say that no dog or breed should have this as an endemic problem regardless of whether it causes pain or deficits in only some of that group.

Still: there is clearly research to show most pain correlatates to syrinx width, not length, and that is on a sample of dogs where the syrinx may just as well have gotten wide slowly, too (Leo's has slowly widened over 5 years, for example). It isn't the case that long syrinxes develop any more slowly than wide ones. A lot of the dogs I know of who MRI'd with a spine full of syrinxes were under 5 and a couple were under 18 months. I know some neurologists feel the full spine syrinxes can cause a sudden pain 'blowout' and that some will therefore advise surgery before this possibly happens. That is Geoff Skerritt's perspective for example.
 
Wow. That "pain blowout" thing is a scary scary thought! If that is true then that on it's own is enough to do a surgery right away. I would be SO mad at myself if that would ever happen... Do you know of any cases that has happened>
Also, the thought of my little girl having pain to burden she is "used to" is just terrible.
I'm curious as to what Dr. West will say on Monday. As of right now, I am still scheduled for surgery on september first.
 
Karlin, I would greatly appreciate if you could direct me to the link for sending CLaire the MRI. I looked at her site and could not locate it.

Lynn, I am anxiously awaiting what Dr. West's opinion will be on the MRI and clinical exam. I am keeping my fingers crossed for you and BLondie.

One interesting note which Dr. West had pointed out to me when reviewing Jack's MRI together. He said that the medulla and whether it was compressed down or whether it was still bathed in CSF had a lot to do with the level of sx's he noted in his pt's. He said to compare human CM to dogs is quite different since humans walk on 2 legs and dogs on 4; therefore the pull of gravity on the areas of the brain are different. BTW I am paraphrasing what he said bc I can't recall verbatim. Has anyone else heard anything about level of compression of the medulla and its effect on symptoms in dogs with CM?
 
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