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View Full Version : Blondie diagnosis... PSOM?SM? VERY strange..



Blondiemonster
10th August 2010, 03:10 AM
Hello all,

So as you all know Blondie started acute symptoms off what I thought to be SM two weeks back.
Airscratching, airrubbing, lethargic, just not being herself etc..
I went to LIVS and she was diagnosed with moderate malformation and a spine filled with fluid,
so a very large, but thin syrinx. She ALSO was diagnosed with PSOM, and they drained the fluid right there. She was send home with antibiotics.
Now.. here is the kicker.
I asked Dr. Marino if the symptoms she was showing could be the PSOM. He said "I doubt it"
According to him she would go paralyzed within less then two years without immediate surgery,
I scheduled her for surgery on september 1.
Now guess what..?
Ever we have been back from the hospital Blondie has been showing no symtoms.
A little head shaking here and there, but that's it. (they did pierce her eardrums, so cant blame her) She is her active self, plays all day, runs around , barks at the mouse in the kitchen...
THis is so strange.
Can a syrinx that long be asymtomatic?
I am going for a second opinion to Animal Medicine clinic in Manhatten, seeing a certain doctor West, recommended to me by Jacks mom here on the forum.
Surgery for a dog who is not at all in pain RIGHT NOW seems so weird....
Any comments and ideas welcome.
The only thing I found was an article of an airscrtacher and headtilter that was diagnosed with mild SM but the symptoms ended up being PSOM after all as well.
The symptoms disappeared then came back 3 weeks later as the ear needed to be drained again....
I'm completely puzzled as to what to make up now.
Any of you know dogs with a large syrinx that are asymptomatic?

Soushiruiuma
10th August 2010, 04:30 AM
I have definitely heard of dogs with SM who are asymptomatic. This is in fact one goal of Rupert's fund is to identify asymptomatic SM dogs. I can't comment on the severity of syrinxes in those cases. Several other forum members would be far better informed to answer this question.

Honestly, given the very sudden onset of symptoms in your case I think the ears were probably most likely the cause.

Surgery may be unnecessary, at least for now

sins
10th August 2010, 11:25 AM
I think if you have doubts, then a second opinion is an excellent idea.
As many cavaliers have existed into advanced old age with syrinxs or even before showing symptoms,I'm not sure how he can categorically state that your pet will be paralysed within two years.
Now perhaps Blondie will be a good candidate for surgery,who knows?It's possible that early surgical intervention may be her best option longterm.But it is a major undertaking and before submitting her to this, I think that learning about what the surgery entails and what to expect immediately afterwards and what you can realistically achieve is vital.
Good luck with your new appointment.
Sins

Karlin
10th August 2010, 12:27 PM
Long and narrow and in the centre of the spinal canal is a much better syrinx situation than short and wide, especially if lopsided.

I don't know if I'd agree that Blondie would def. be paralysed, especially as the symptoms seem to be PSOM-related. If symptoms resolved, I personally would wait til I saw something recurring before I'd do surgery. Also personally, I would not myself wish to go for the titanium mesh surgery -- am just not comfortable with some aspects of it, but those are my own biases. Of the options, I'd probably talk to Dr Shores about thr swine tissue decompression.

You can if you wish send a CD of the images to Dr Clare Rusbridge for a second opinion. She charges a small fee for this. I do know from conversations recently with her, that she prefers to wait to consider surgery until there are some significant symptoms of pain/disability (eg limb weakness, vocalised pain), but other factors may be very important and outweigh that starting point consideration, and do need professional thought and advice -- the kind of scan and syrinx, age of dog, etc.

I have no doubt that with Leo's short but increasingly wide syrinx I would have been told surgery or probably euthenisation within two years by some neurologists... when he was scanned at age 1. He turns 7 next month and has been managed with minor to moderate symptoms for all that time, with little impact on his activity levels or enjoyment of life. He has only ever had a single SM session' of serious pain and that came after he fell off a bed and during weather that had reportedly triggered problems in other dogs.

I would go for second opinion and perhaps also contact Clare. The fact that PSOM seems to have caused the symptoms would make me more reluctant to do surgery right away.

I'd advise reading Clare's website FAQ on SM as a priority,because it will answer your questions in a more considered way than any of us can here. I think you need her level of detail. Yes a long syrinx can produce no symptoms -- this is actually fairly common in scans of affected but asymptomatic dogs. That however does not mean the dog is not compromised but may simply have learned to tolerate the discomfort or pain. A dog owner or vet is really not equipped to judge whether a dog is actually feeling pain because much of it will not be noticed as an obvious symptom -- a neurological condition like this needs specialist assessment for signs of pain and disability.

Karlin
10th August 2010, 12:41 PM
This is in fact one goal of Rupert's fund is to identify asymptomatic SM dogs.

Just to clarify, actually the goal is to find older dogs fully clear of SM :). The only way to do this is to scan asymptomatic older dogs (asymtpomatic on a clinical exam by a neurologist, as a dog's outward appearance to an owner too often is not really 'asymptomatic' :( ). The majority of the asymptomatic older dogs scanned using this fund DO have SM, the researchers are finding, but are truly asymptomatic at time of scan. :thmbsup: The rare dogs that scan clear are the ones that are critically important to the genome research (and the future of the breed...).

More info at www.rupertsfund.com. :)

lovecavaliers
12th August 2010, 03:11 AM
Hi Lynn

Glad to hear Blondie is feeling better. When is your appointment with Dr. West? Like I said he is very conservative with treatment, so if he recommends surgery than it probably is necc. Please let me know how it goes. I am hoping Blondie continues symptom free and doesn't need surgery or meds:D
Thinking of you both,
Irene

Love my Cavaliers
12th August 2010, 02:51 PM
I agree. Second opinions are always a good idea. Unfortunately in Riley's case, both neurologists said exactly the same thing - surgery. Actually, maybe it was a good thing, because it made my decision easier. I feel fortunate every day that she is one of the lucky dogs that is actually doing better - with the help of prednisone - than before the surgery.

Blondiemonster
12th August 2010, 04:46 PM
Hello there. Thanks for your responses.. Every single one of your opinions is very helpful to make up my mind. icon_nwunsure
As far as the PSOM goes;
THe only unfortunate thing about is that it almost always comes back within a period of 2 weeks to a couple of months.. That means symptoms return and dog has to go under anesthesia again to make diagnosis and when something is found ear cut the eardrum again. :(
So if symptoms would return thats the first thing i'd have to do. If the ear has filled up with liquid again then its once again confirmation that the glue ear is the cause.
In most cases it comes back 2-5 times. Ugh. There is only one case in the world I believe where they put tubes in the ear. (like with kids) Anyone has experience with PSOM?
So unfortunate though that there is no easier way to diagnose then putting a dog under...
Jack's Mom: appointment is Monday. I will let him know you send me. :)) @ Riley's Mom: i still dont know for sure what the second guy will say.. He may still recommend surgery. I am ALSO trying to get in touch with Clare R. in england but she hasnt replied to my email (sent it 11 days ago)..... Anyone that knows her well?:lol: Alos, Karlin: why do you like the swine tissue better?

Nicki
13th August 2010, 11:30 AM
So sorry you are facing this - my knowledge and experience of PSOM is that it can cause these symptoms.

BUT it can disappear - it's very rare in the UK to do surgery for PSOM.

Dogs who have been scanned at a year with PSOM, can be rescanned at 2 1/2 and the PSOM has disappeared. I have a 1 year old who was scanned at 8 months with PSOM in one ear, he does have some symptoms, mainly some scratching at that ear, and the ear feels a little warm {no infection/wax etc} - but these symptoms vary considerably and he will go for weeks with no scratching at all. His hearing is not affected and I was advised by the neurologist not to intervene at present.

Karlin
13th August 2010, 11:59 AM
I don't think I'd be too worried about having to redo the PSOM procedure -- it is pretty minor and does not always have to be done, or done that many times. Also vets can often do that procedure -- doesn't need to be a more costly specialist visit.

I prefer the swine fat technique (which is really just a variation of norm al decompression -- all neurologists as far as I know, use something similar) because it doesn't involve sinking screws into the dog's skull and there still is little long term info on the effectiveness of the mesh technique. Also I know of several mesh surgeries that have not had great results and to me it seems very invasive. Dr Scholes has published a paper showing similar results to the mesh technique without the added complexity of screws going into the skull, the mesh potentially shifting over time, etc.Also the recovery from the mesh surgery is very, very long -- crating for around three months. Given the lifespan of these dogs, I would be reluctant to do more. All the dogs I personally know of with the mesh have to eventually go back on painkillers which indicates some regression, whether or not scar tissue is the cause. Personally I think many of these dogs are not being tracked and perhaps the researchers remain unaware of the complications or maybe they are mostly tracking more recent cases as they have refined the surgery.

I would not do surgery on a dog whose symptoms were cleared by PSOM flushing. I would never do surgery as a 'preventative measure' for something that hasn't yet happened, and may never happen, either. This would almost never be done in humans!

I have spoken with some other neurologists who would feel stating that a dog will almost certainly be paralysed eventually or even need to be euthenised just doesn't fit with the caseload they see when they do not do surgery.

That said all cases are different, much depends on the given MRI and shape of syrinx, etc. But I'd get a second opinion. Actually in your case, I wouldn't -- I might arrange to have Clare view the disk and pay for that, but I would definitely not do surgery on a dog whose symptoms resolved.


I know Clare has been on her summer holiday and also flying to several places to give papers and she gets a huge volume of email. If you wrote to arrange a second opinion then she will reply. If you write to ask for advice rather than to arrange a professional second opinion -- she may not reply at all as the volume is too high and this would be asking her to do her professional work for free. I always ask people to remember she (and any other neurologist or vet) is a professional and gets hundreds of requests for free advice. Like any of us -- we would not expect to work for free. So if you want a second opinion I'd follow the instructions on her website for seeking a second opinion on a disk. :thmbsup: If that's what you did then I am sure she will get back to you.

Karlin
13th August 2010, 12:05 PM
Incidentally, if there are people who in the past have received advice gratis from Clare–and she has always been very generous in supporting people with affected dogs and tried her best to give them feedback when she can–perhaps they might consider making a donation to Rupert's fund as a thank you? For many years Clare gave a lot of free advice to people that I know was greatly appreciated by dog owners. A donation that would help her to continue the research that benefits all of the breed as well as our individual dogs going forward would be a wonderful way to show appreciation for past help! :)

Blondiemonster
13th August 2010, 06:30 PM
Hi Karlin

I did ask about a professional phone consult actually, as I had read she does those.
As far as the PSOM goes; I am surprised to hear that surgery is often not necessary a second time..
LIVVS has been incredibly difficult on the administrative part, they actually insisted on emailing her MRI to the vet I am seeing for second opinion. They said it's a jpeg image, and that it can be done, and that they do it all the time.
So I wonder if emailing claire the MRI would be an option?
BLondie is defenitely not in pain at this time. If anything, she shakes her head and scratches at (both) her ears once in a while (which I still dont know if its PSOM or SM related, and frankly, who knows?..) I do notices she twitches often when resting.
But she bounces around from one couch to the other, runs up the stairs 2 steps at the time and dances on her hindlegs in cirkles. Limb weakness? I dont think so. Balance issues? None. Pain? None. So far, that is.
However, what I was wondering , since you seem to be very knowledgable about this disease and very well informed; do syinxes tend to get larger overtime? Is that always the case? I am just worried about an 80 to 90 percent skinny syrinx become wide and possibly in a short period of time? That idea makes me really nervous and sick to my tummy. :-? I am very surprised to read your info in recovery time with the mesh..
I am getting the second opinion to get more info on the shape and size of the syrinx , the prognosis for the syrinx, and to get confirmation that not doing surgery right now is best. I am also going to inquire about just giving drugs to decrease spinal fluid. I am also going to ask how often a follow up neurological exam would have to be done in case I decide not to go for surgery. I will also try and email Clare again, but I'll wait till next week, ad bug LIVVS again for a disk. sigh. :)

Karlin
13th August 2010, 07:25 PM
Hmmm -- weird. Seems there are some confusing messages coming from different people at LIVS, or the response and approach has changed very much in recent months perhaps, as I think you will have seen from responses to your posts on the SM Yahoo list (I think that's you asking about surgery at the moment)? LIVS generally has recommended crating for around two-three months (that is what they have meant in the past by 'restricted activity'). I know of definite cases where scar tissue has recurred. I know of dogs that have had the plate shift and other complications, and a dog euthenised due to pain. At the moment I do not know of a single dog with mesh surgery that is NOT on painkillers still but this may only reflect the people I know and those who post to discussion boards or lists -- I know they say 80% or so are not, but I haven't seen evidence of this. It may very well be that people whose dogs do not need painkillers do not tend to remain on discussion boards and that the 10-20% who do need meds are the ones who continue to post. It also may be that LIVS is just not hearing back from owners who go on to have further complications, as people often will go to their own vet and not back to the centre. They are tracking some dogs for a study on surgery results over time. There is also thinking that collapse of the syrinx may not actually matter than much in dogs... that the decompression is what relieves most pain.

Dr Dewey -- who pioneered the surgery with Dr Marino -- quoted about a 7% relapse rate with mesh dogs at the recent AVMA conference, but again, they have only been tracking mesh dogs a couple of years. Clare was including dogs over 6-7 years in her brief survey of post-surgery dogs.

As little has been published about the mesh surgery there isn;t too much to go on statistically, that has been peer-reviewed. Clare's often quoted paper on 50% relapse I think is taken perhaps a bit too literally by many -- she herself notes this is an imperfect analysis based necessarily only on a small group of dogs and self-reorting by owners. Also, that 50% does not mean dogs go steeply downhill -- some will be euthenised but many simply need some medication for a pretty normal life.

I cannot nor can anyone here give an estimate on whether your dog's syrinx will worsen or how bad she might get. Nor can any neurologist do more than guess -- they simply do not know (one human neurologist, considered one of the world's leading SM specialists, told the CKCS SM symposium a few years ago that he has spent his life studying the disease and it remains a little understood enigma with no certainties. That is what makes it so deeply scary and frustrating).

However like MVD it IS generally a progressive disease and most syrinxes will progress. But 'progress' can mean a myriad options, from a tiny bit to all down the spine, or get very wide and painful. Whether that means in the lifetime of a dog it will cause any significant difficulties simply cannot be predicted. All neurologists I have heard speak on this say some asymptomatic dogs have huge syrinxes and some badly symptomatic dogs have small syrinxes or just CM. Fluid flow in an individual dog probably makes a difference. As I noted, Clare's FAQ on SM explains pretty much all of this in some detail and there's a lot of links to research on Rod's website.

My opinion on surgery techniques is just that. I don;t like the degree of invasiveness of the mesh surgery. I know people very happy with it and people who would never put a dog through it again. I know dogs with regular decompression who remain meds free after 7 years and some who have had to be euthenised within months. There are no guarantees or answers I am afraid -- just judgement calls that are generally very personal.

I don;t however see how any specialist could say a dogs will certainly become paralysed or be euthenised within x amount of time without surgery, or that without surgery they will get worse and worse and suffer. I have been following a lot of people with a lot of dogs and this simply is not the case that anything can ever be said with any certainty. However the US does tend to be more a surgically-driven environment than the UK for example. There's a post on the Shore's paper somewhere in this forum by Rod Russell that notes Dr Shores' results on the swine tissue surgery.

On PSOM:


As far as the PSOM goes; I am surprised to hear that surgery is often not necessary a second time..

Actually I didn't say it 'often' doesn't have to be repeated, I said:


and does not always have to be done

I'd say it seems it often does have to be repeated, unfortunately, but most cases I know of myself only needed a second flushing. And that still is a very minor procedure compared to a decompression which removes a piece of skull and part of the brain covering (dura).

It is usual for centres that do an MRI to give the owner the disk of the MRI images. Given the cost of an MRI, I would definitely want a disk. A jpeg image if good quality could be suitable but generally you need the original scan resolution, not a smaller jpeg.

I can't really answer about what Clare Rusbridge will need for a reading -- generally she needs the disk as she needs a range of images. She knows the LIVS people well though and could probably get sent what she needs.

Karlin
13th August 2010, 07:34 PM
Just to add: it is really impossible for an owner or even a vet to judge things like limb weakness and neurological pain in many cases. My Leo dances on his hind legs as well, runs all over the place and does this thing where he leaps in the air at me repeatedly... :lol:. He leaps ont the bed and sofa. But he still has weak limbs -- it is just these are not ways that affect them. Also outwardly 99% of people would not see he has pain.Over time I have grown to realise he hides it, including from me -- but he will flinch, if only almost imperceptibly, when touched sometimes in certain areas. When he had his pain fit, I could not touch those places at all without him screaming.

Along with the MRI you should have had a written report with clinical exam results -- these will indicate if there are other clinical signs like ataxia etc.

anniemac
13th August 2010, 07:52 PM
Karlin has given some great advice. I actually posted the question on the SM yahoo group because of what you told me they said at LIVS. I agree with a lot of Karlin's points and I don't know if you read the thread about swine tissue. Pat gave some information because she heard Dr. Dewey and Dr. Shores speak in Atlanta. After reading that, I would also look into that process. The problem is no one can tell you the outcome and even though we would like to know the success rates, each dog is different. Ella had surgery and also I felt it was best for her due to her large wide syrinx and how she was progressing. I think Rod mentioned that neurologists are most likely to recommend surgery. I liked when my neurologist spoke to some Cavalier owners and he said that he looks at surgery as a last resort. He would not want to put a dog through that unless medication was not helping. I really respect him. Granted she did not have mesh or swine and reading some statistics on relapse on this forum has scared me, I do not regret that. He mentioned that he would like to know more about the benefits of titanium mesh before he would recommend that. He said it is a more difficult procedure and maybe they have results to prove that it is the better option.

Saying that, I am skeptical as to why LIVS mentioned not having to take medication after surgery and stressed the rate of recovery. When a dog goes through any surgery that complex, I would not want to do anything to hinder the recovery process. Everyone I have talked to has said they would restrict activity to what Karlin said 2 to 3 months. I think it is better to be safe than taking risks on exercise etc. I can't remember what all Karlin said but I did read about your symptoms. Ella had similar symptoms but she also was at a point where she could not be touched and was hiding etc. I did read about long narrow syrinx not showing as many symptoms as wide ones. I think that is what she said. I would also say that Ella never would whelp in pain but that did not mean that she was not in pain. Her neurologist could not tell me how long Ella had but I did ask if I did not do surgery could she not be around in 3 months. Of course he could not tell me but he said it was possible. That is just because of how fast she was changing and no medications were helping her.

I know you told me Dr. Marino told you about the person who had SM and did not know it until one day shaving he became paralized. It might be just me but to claim how great the success rate, little recovery time, and hardly any dogs on medication after seems way too good from what I have heard from others. I don't think there is anything wrong about having to continue on medication. I think asking everyone on this forum before deciding what to do is the best advice. No one can tell you whether or not to do surgery and so many people want to know. Karlin's dog Leo seems to have done well without it, then others not, some with surgery have been very successful while others have relapsed.

I am not sure about decreasing the size of the syrinx. I was told that the objective of surgery was to reduce pain and to eliviate the pressure. I think that if someone assumes that having surgery will cure SM, then that is a concern. Unfortunately, even if the surgery is a success and no more symptoms, there is always a chance that something will happen. It is hard and I look for things all the time, but my advice is to trust your instincts, read about what Pat wrote, contact Dr. Shores and continue to ask around.

I hate this condition but there are many that continue for a very long time with no progression. Ella's neurologist said something interesting when he talked to us. He said the majority of the time he will discover a dog has SM is when they get an MRI for another condition. Many have it and are asymptomatic like Karlin said. He told the group that the majority of the cavaliers there had SM. That does not mean that they should all have surgery etc. He said that mainly the importance of finding that on MRI's was for breeding reasons. If Blondie is reacting well to medication, then know that you have time to research your best options.

I hope this helps and anyone can disagree with what I said. Please feel free to email me some more because I know how hard this is to figure out what to do for treatment. I would not base my decision on one person, one experience or what one neurologist says. There are so many different cases and the most important thing is to monitor Blondie's progress. Keep a journal to notice her symptoms and if they are getting worse etc.

Ella and I are thinking of you:xfngr:

Blondiemonster
13th August 2010, 08:24 PM
Karliin,

Thanks for all this information!!!
Wow. It does seem to be very complicated. I was surprised as well that Dr. Marino said "paralyzed within less than two years".
I didn't get the chance to talk to him much after the MRI and test results. WE went to pick up Blondie and he only had like 3 minutes to talk to us cause he had to go do surgery hence a lot of my questions remained unresolved. He seemed to leave me with the "it should be clear to you that surgery is necessary" feeling.
He didnt make it seem like too big of a deal, which is a bit worrying.
I know he is the lead specialist surgeon, and I hate feeling that I cant trust his opinion. So yes, Annie, I do find that strange as well....

Karin, its interesting to read that dogs can have limb weakness and still dance around. I read that some dogs start dragging their legs or stumbling a lot when limb weakness occurs. What are Leo's main symptoms then? As far as the Ataxia goes.., I have no idea if she has that. But im hoping the second opinion vet will do a clinical exam as well.
Also, I did not know that duraplasty was part of the decompression surgery at LIVS! there is not even proof that it it helps better then decompression alone. Actually I read an article on a study that said that it gives the same success results.(in people)

Here is also an interesting article I read; http://www.conquerchiari.org/subs%20only/volume%202/issue%202(12)/Dura%20Open%202(12).asp

LIVS did not at all inform me of duraplasty when going through the steps of the surgery. !!! Considering the extra risk for infection and leakage you'd think they would.

Actually, on top of that, I have read a study that in people, there hasn't actually been difference in success results with or without removing part of the dura! I wish I kept the link. I dont think I would necessarily agree on opening the dura unless someone explained to me its really necessary.

As far as Blondie's symtoms, the one thing that changed drastically with Blondie after the PSOM surgery is her "spark". Before she was lying around, with this "mommy im suffering " in her eyes look and sleeping all day. After the PSOM flushing she is back at her old self. THe airscratching is gone as well. Shaking her head and scratching t her ears seem to be the remaining symptoms.

One more question;
The dog that was euthanized because of pain. Did he have severe pain before the surgery? Thanks Karlin.

Blondiemonster
13th August 2010, 08:38 PM
Oh and Ella's mom! I will defenitely email you!!! Ill email you after my vet visit monday.... I enjoyed talking to you very much!

Blondiemonster
13th August 2010, 08:44 PM
Also... allow me to post a link to Blondies own facebook page :))
So you guys know who the little girl is were talking about.. :)

http://www.facebook.com/lynnverlayne#!/profile.php?id=1613533777&ref=ts

Karen and Ruby
13th August 2010, 09:51 PM
Hi Blondie and Blondie's Mum!!

Ive been following your posts and wanted to say that PSOM can indeed cause some dogs terrible pain.
A friend of ours has a 5 year old Cav with CM and PSOM and it has caused her no end of trouble and pain!
She eventually decided to have the gromitts put in and has been doing very well since that time.

As for surgery it can only be your desision- we have all been faced with it on our own journeys and fought with ourselves over it too!
For me having Ruby crated for 3, maybe more months on a limited life span just wasnt worth it.
For me I want for her to have the most comfortable life possible and for he to just be a dog for as long as she can.
I wont know if Ive made the right desision until our end BUT right now I think I have made the perfect desision..
She is still such an active girl on very good medication management and most people dont even realise there is anything wrong- especially the judge at last weekends Agility competition!

Good Luck with all your desisions- Dr Rusbridge has served us very well and I truely value her opinion and Im sure you will too!

Blondiemonster
13th August 2010, 11:44 PM
Hello Karen.
The blenheim with freckles on his nose in your picture reminds me of blondie a bit!!! :)
Thanks for reading my posts and letting me know about your friend with the PSOM dog. It is useful to know that it CAN cause that much pain.

I completely understand that you dont want to crate Ruby.. I honestly dont think I could do that to Blondie either. I never thought about it, since I wasn't told that was necessary. What confuses me is that on Clare's question and answer it clearly states that dogs are NOT crate bound after surgery.

Hopefully I will figure out whats best soon... I pray to God he gives me the answer.
Lynn and Blondie

Karlin
14th August 2010, 12:13 AM
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.

Karlin
14th August 2010, 12:16 AM
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.

Blondiemonster
14th August 2010, 12:57 AM
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

Karen and Ruby
14th August 2010, 11:02 AM
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!

Tania
14th August 2010, 04:49 PM
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.


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

Love my Cavaliers
14th August 2010, 06:15 PM
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.

Karlin
14th August 2010, 10:57 PM
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".

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.

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.

Karlin
14th August 2010, 11:10 PM
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
_____________

Blondiemonster
14th August 2010, 11:20 PM
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...

Blondiemonster
14th August 2010, 11:27 PM
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. :)

Karlin
14th August 2010, 11:49 PM
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.

Blondiemonster
14th August 2010, 11:57 PM
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....

Karlin
15th August 2010, 12:12 AM
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.

Blondiemonster
15th August 2010, 12:28 AM
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.

lovecavaliers
15th August 2010, 12:36 AM
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?