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

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?

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

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

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.

This is in fact one goal of Rupert's fund is to identify asymptomatic SM dogs.

Click to expand...

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. 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.

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
Thinking of you both,
Irene

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.

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?

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.

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. If that's what you did then I am sure she will get back to you.

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!

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.

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..

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

and does not always have to be done

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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.

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.

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:

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 only/volume 2/issue 2(12)/Dura Open 2(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.

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!

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

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!

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