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Jen
26th July 2005, 03:47 PM
Yesterday we took Abbey in to our vet to discuss the behaviors we've noticed the past few months--all of which match the symptoms of SM. As I feared, her exam came up normal and we're now being referred to the University of Minnesota for a possible MRI. Our vet wasn't aware of SM, and was very interested in the articles I brought in (thanks to Karlin and the rest of this board). She's asked to see Abbey again after her MRI, which is great to have her so receptive and supportive of something she was unaware of.
We'll be getting a call within the next few days to set up an appointment and we'll go from there.

Karlin
26th July 2005, 07:06 PM
Jen, good luck on the MRI. It will set your mind at rest -- as you will know one way or another what you are dealing with, if anything. Keep in mind that the symptoms from PSOM ('glue ear' in cavaliers) are very similar to SM even some of the extreme symptoms like neurological proboems and seizures, so you may find you are dealing with an ear flushing and not SM, which is what happened with me and Jaspar (remember that I got mine MRId because I thought Jaspar had symptoms, and it turned out to be PSOM with Jaspar and SM in Leo, though he had no symtpoms at all).

I'll be hoping for the best possible result for you and for Abbey. I can tell you that even with finding that Leo has a syrinx, it was a weight from my shoulders to have them MRId and to know what was going on and how to move forward.

I am currently setting up an SM website attached to the board here and that will centralise lots of info on this condition.

Personally I have gone from being very fearful of any SM diagnosis to accepting that it is apparently so widespread among cavaliers that only the smallest minority, perhaps 10-20%, are totally unaffected by the skull malformation that seems to cause SM or SM itself. As millions of cavaliers seem to live with this with no or few symptoms, the issue for most people is going to be not whether there's an SM diagnosis, but how affected the dog seems to be. Almost 6 months after diagnosis Leo remains just the same with no pain or problems and only some mild scratching.

If she does show any syrinxes and compression at all do talk to them about frusemide (Lasix). They are not generally using it in the US but I do notice a difference and I know Clare has started prescribing it ijn at least some cases.

Jen
26th July 2005, 07:32 PM
Thanks Karlin, and yes, I agree that at this point we just want to know what we're dealing with--it's more frightening not knowing what's going on or if she's in pain or not.
I'm currently researching PSOM as I've heard it can cause similar symptoms.
I think a separate SM site would be wonderful, for easier access if for anything. You've been a wealth of knowledge, I appreciate it so much!

rory
27th July 2005, 02:29 AM
I really hope both Abbey and Rory have glue ear!! wouldn't that be a relief! :roll:

Cathy T
27th July 2005, 02:31 AM
I really hope both Abbey and Rory have glue ear!! wouldn't that be a relief! :roll:

Wouldn't that be great!! Thinking of both of you.

Maxxs_Mummy
2nd August 2005, 10:16 AM
{{{{{{{{{{{{{{{{{{{{Abbey & Rory}}}}}}}}}}}}}}}}}}}}}

OK then, I agree with everything Karlin says. It's the NOT knowing that's worse. I was in a terrible state for days before Maxx was scanned. This probably sounds stupid but after we knew that he had both PSOM in his left ear as well as SM, at least we knew what we were up against :?

There was us thinking he was ignoring us and half the time he couldn't hear us, poor baby LOL. Now, if we wiggle our fingers at him he knows we want him and will come willingly :D - especially if he thinks he's going to get something ;)

Ref, the SM, Maxx has been on Frusemide for 2 weeks and tbh it's like having my dog back again. He wants to play and go for walks and is even getting excited about things and jumping on the sofa and bed again :D

Granted, he does have some scratchy and bottom scooting moments (which are mainly after getting excited) but he doesn't appear to be in pain now. We've also not had one instance of the yelping & crying that we had previously :D

Just remember that even if your dog does have SM, it's not an automatic death sentence. Maxx is 6 this month & has an excellent quality of life (he's downright spoiled really :lol: ).

If you need any support just holler OK ??? :D

rory
2nd August 2005, 09:32 PM
Well, I got a call from the NC State people to confirm details. we're scheduled for an MRI first thing in the morning Friday the 18th... I'm really freaked out. They are only doing a sagittal view, so it won't screen for PSOM, unfortunately. That's crazy that poor Max has both PSOM and SM!! :(

Anyway - I told her that he was scratching more. When I first signed up for the study a few months ago I didn't think he was showing symptoms, but he's definitely scratching more now and yelping sometimes for no apparent reason. I told the doctor this and she made this sad "oooohhhh..." bummer sound which sortof put the nail in the coffin for me. :cry:

I asked if they were getting a lot of the MRIs back as positive for SM and she said, "Yes, the ones w/ clinical symptoms are mostly positive" and she definitely seemed to think Rory's scratching and yelping are clinical symptoms... *sigh*

In 2 weeks I'll know for sure.

Unfortunately, she can't release the MRI image, so I won't get a copy. Which means that if he does have it and needs surgery, I'll a have to get another MRI afterall. Ugh. If I hadn't already made plane arrangements and everything, I might pull out and just get it done here, but it's all already set up so I might as well go. Who knows! It may be nothing! :roll:

not holding my breath...

rory
2nd August 2005, 09:33 PM
Question about the furosemide --

What is the reasoning behind doing the medical treatment vs. surgery? Can it prevent progression of the disease? Can the surgery "fix" it?

Maxxs_Mummy
2nd August 2005, 09:52 PM
Well, Maxx is 6 this month and as he 'only has SM mildly' he is not a candidate for surgery. Tbh, I had already decided that there is no way that I would ever put him through it anyway.

Do you realise that the surgery is actually open brain surgery? I have had several long chats with my Vet who also has three Cavaliers and he wouldn't put any of his through it either. I belong to another group and it would seem that even after the surgery the poor dogs still suffer pain, scratching etc. I personally am more of a 'quality of' rather than 'quantity of' life, person. I would never try to put anyone off doing what they want for their dogs, but surgery is not for me.

The Frusemide is a diuretic and therefore drains the excess water from the body tissues. I do know that Maxx is like a different dog in the two weeks that he's been taking it :D

If push comes to shove and he gets much worse I won't let him suffer and my Vet has promised me that he will take the decision out of my hands, bless him. I know he will too. I just hope and pray that it doesn't come to that & Maxx has a wonderful long life free of pain. He is my best friend in the whole Universe and we have been through so much together, I just couldn't imagine life without him ...

Maxxs_Mummy
2nd August 2005, 10:00 PM
Sorry, meant to ask, does Rory have any other symptoms of SM ? Maxx had a whole caboodle of them. Scratching and yelping can also be signs of PSOM or also allergies. Maxx had allergy tests, full blood tests and X-rays done before he went for his MRI.

Jen
2nd August 2005, 10:26 PM
I'll keep my fingers crossed for Rory. We're in the midst of all the research that is now being done and that's a great place to be if this is indeed SM. There are more options now than there were even a year ago. If it is SM you'll make the decision that's right for you, only you can do that. Our vet is pro-surgery, as he heard directly from Clare that once cases get worse the surgery isn't as effective. That's new information from what she'd intially thought even a year ago. For the surgery, there are two options from what I understand. There is the shunt and then there is the actual full surgery. Our vet said he's had great sucess with only the shunt version, and only once where he's had to go back and do the full surgery. He's also treated mild cases with only meds, but again, it's what is considered mild that is so hard to determine. Abbey's only yelped three times, but there are days that she'll stop 1/2 dozen times to scratch while walking around the block. Other days she's totally normal.
A full MRI is needed for either operation, so that is something you'll need to think about as well in terms of having to have another MRI done at some point if you opt for surgery. Once we get Abbey's lumbar xray back, we'll then know if we do in fact need a MRI. If so, we're opting for a full one just to have all basis covered.
Just some things to think about, but try not to get overwhelmed. You're doing more than a lot of people are, so Rory is very fortunate. Keep your head up and stay positive--you've got a great support system here as well. :)

Maxxs_Mummy
2nd August 2005, 10:47 PM
I agree with Jen, a full lumbar MRI is better if you want to know definitely. If we'd only had the partial MRI done they would never have found Maxx's syrinx's as they are right at the base of his spine.

To work with your neurologist is the best thing and also to feel comfortable with whatever you decide is best for your own dog.

I will cross my fingers and Maxx will cross his paws for you both.

Tbh, I think that the only reason they see more affected MRI's is that the MRI's are so expensive and unless the dog has symptoms most people wouldn't a) pay out for one &/or b) want their dog to undergo a general anaesthetic for an MRI if it was a pet and not used for breeding.

I know that unless Maxx had shown symptoms that we couldn't get to the bottom of then there is no way he'd have had it done. He was 'fixed' at 6mths and is just the baby of the house. Not a show or stud dog :roll:

Karlin
2nd August 2005, 10:58 PM
The frusimide (furosimide in US) is Lasix the heart drug -- it lowers the pressure of the CSF fluid which eases the pressure that causes the syrinxes. When I had my two scanned in Feb really only very few neuros prescribed it for SM, primarily Skerritt at Chestergates Hosptial in the UK who also is a strong believer in shunt surgery. He feels the frusimide helps in about 80% of cases and he told me that he likes to re-MRi in a year or two to see how the syrinxes are. Sometimes they actually diminish or even disappear using frusimide, he says. He feels the decompression (skull) surgery is too risky. The latter isnl;t technically brain surgery; what they do is remove a bit of the skull to allow more room for the brain. It is delicate surgery but according to neuros who do it, has had very low mortality> But about 25% of cavaliers grow scar tissue at the site which can cause a recurrence of the symptoms. Dr Dewey in NJ is pioneering using titanium mesh at the surgical site (as in humans) to halt scarring. he has only just started doing this so no results yet.

Interestingly more neuros seem to be prescribing frusimide now including Clare. She didn't do this until a few months ago. I waver between going for the shunt or the decompression if needed. Hardly anyone does the shunt so that's interesting that your vet does it, Jen. I think a lo9t of the dogs that have had surgery on the other list (for dogs with SM) all had it when they were very severe cases so aftereffects would be excpected to be bad. Lots more than are on the list have had the surgery and also, some of the newer cases -- done when dogs weren't so far along in symptoms -- seem to be going really well. I wuld have been initially really wary of the surgery but am far less so now as more info is becoming available.

I tend to listen to what Skerritt says -- I believe he has been treating this longer than anyone anywhere -- first case noted by Xray in I think 1978? -- and he has far more anecdotal evidence of what works. Also he is old fashioned in a way -- more liekly to take a conservative approach. Clare doesn;t believe in surgery until the first sign of pain or weakness.

I do think SM is very prevalent in the breed -- I trust Clare's very high figures of at least 50% plus plus some other stats she has notn yet announced but will soon -- and if so affected dogs exist on a huge spectrum with only the few (but increasing numbers) having severe SM. Leo runs and plays since diagnosis with some daily scratching but nothing extreme, no pain, no discomfort that is visible. I watch him like a hawk.

PSOM is very common in conjunction with SM and seems to be common full stop. It is not associated with SM -- but Skerritt says he sees some degree of it in almost all cavalier MRIs. Both mine have mild cases.

Maxxs_Mummy
2nd August 2005, 11:09 PM
It was Mr Skerritt who prescribed the Frusemide for Maxx, Karlin. He was also one of my Vet's lecturers at Uni!

My own Vet informs me that the 'malformation' has been seen in just about every single Cavalier that he has ever carried out a Post Mortem on icon_yikes shocking really. He is also convinced that most Cavaliers either carry SM or suffer from it.

Mr Skerritt also told me about PSOM being present in most cases of SM too. He doesn't really recommend surgery on PSOM for Maxx as he said it doesn't necessarily always work the first time, or the second and if it's not causing pain then it's best left alone.

rory
2nd August 2005, 11:34 PM
Thanks everyone for the info. I really appreciate it. I am glad we're so much further along in knowledge and research than we were a year ago, but I still feel like we're still in the experimental phase of treatment. My mother and co-workers (vets) ask what the treatment options are and the success rates and I just don't know.

karlin - any idea on the success rates of the surgery/surgeries? The main reason I want to do the MRI now is because I heard (I think on the chiari list) that the success is inversely related to how long the symptoms have persisted... And that the surgery can't correct the damage that has already occured, but just prevent further deterioration?

So maybe waiting to do surgery until it's severe is not the best idea?

Karlin
3rd August 2005, 12:13 AM
The surgery won;t correct neurological damage that has already occured but does ease or eliminate some symptoms caused by the syrinxes that aren't actual damage. The recovery time is long; people say up to a year for some of the problems to stop and remember it is quite invasive surgery too -- that said many cavaliers are doing really well even just 2-3 weeks later. They need about 2 months of very little activity though Clare likes them to get back on their feet and doing things before some of the other neuros seem to.

Clare and neuros like Dr Harrington in Washington state recommend surgery ONLY when the dog is showing pain or weakness. Or I suppose if the MRI shows severe syrinxes even if the symptoms aren't (yet?) that bad or if there are other indications that it should be done. Leo has moderate syrinxes and Clare says to do the surgery as soon as he shows any pain/weakness. Mr Skerritt would advise shunting if needed. I'll get them MRId again in Feb. I think if a neuro isn;t really keeping up with developments in the area, the decompression surgery may seem very experimental but I no longer feel that way about it, and it is used regularly on human SM patients. My ain wish would be that there were some data on shunts vs. decompression. One breeder had a dog shunted by Mr Skerritt over 5 years ago that is doing fine, on no medications at all, and his symptoms were far worse than Leo's. Skerritt is well known in vet circles; has written a couple of vet textxs I believe. My vets knew who he was immediately. I really liked him. I also really like and respect Clare.

I am hoping for my SM website to do some email interviews from time to time with some of the neuros/researchers. I will put some of these questions to them. I am hoping to get Clare, Dr Dewey, Dr Harrington, Mr Skerritt.

Rory keep in mind that many of the things rory is doing would be possible with PSOM as well. Remember I though Jaspar had SM and it turned out to be mild PSOM. Mr Skerritt said the sympoms were very similar.

Donna I had the same advice regarding PSOM from Mr Skerritt and my vets. Not to do the flushing (it can take between 1-5 times to get the plug out) unless the symptoms get severe.

Jen
3rd August 2005, 02:12 PM
Rory wrote:

So maybe waiting to do surgery until it's severe is not the best idea?


This is what we were told by our vet, that the longer you wait for surgery the more less likely it will be effective. He said Clare was initially against surgery, but is now opting for it sooner than later because of the results in the later cases.

Jen
3rd August 2005, 02:24 PM
Maxx's Mom wrote: If we'd only had the partial MRI done they would never have found Maxx's syrinx's as they are right at the base of his spine. te:


This is so interesting to me, because I am convinced Abbey's lower back issues and her SM symptoms are related. The neuro at the U said it's unlikely they are, but I've read cases like this where the syrinxes are not in the typical neck region but lower down the spine. Having read this, I am leary that this Dr doesn't see the connection or is skeptical that her symptoms and her lower back issues are related. He found this sensitive area when she was standing, he ran his hands down her spine, pushing on areas to see if she'd react. When he came to the spot right before her hips she'd go into a sit positon when he'd put pressure on this area. She didn't wince, didn't look back at him, who knows if sitting was what she thought he wanted her to do, but she did it three times during the exam. Given this, he feels she may have some sensitivity in this area, which is why we're starting with a lumbar xray before we MRI.

Karlin
3rd August 2005, 02:32 PM
I also believe that the location of the syrinxes may not affect what hurts where in quite so direct a way. The pressure of syrinxes higher up -- or indeed on an area of the brain -- may affect nerve endings elsewhere in the body. Lots of dogs have issues with their backs, hindquarters and legs (which is why this gets misdiagnoseed as spine and disk problems so often) and I am pretty sure these are not usually due to syrinxes lower down but the whole-body effects than SM can have.

Lorraine
3rd August 2005, 02:52 PM
Karlin,

Do you think that this may have been the cause of "R's" posture? He did not seem to be in pain yet he stance just seemed "wrong".

Lorraine.

Jen
3rd August 2005, 03:07 PM
Lorraine wrote:

Do you think that this may have been the cause of "R's" posture? He did not seem to be in pain yet he stance just seemed "wrong".

I would think so. I know part of Abbey's exam was just to have her walk around the room so he could watch her gate, etc.

rory
3rd August 2005, 04:22 PM
Problems up in the cervical (neck) region can definitely cause problems lower down. All the nerves run through the spinal cord up there and on to other locations. There are nerve connections from the spinal cord down into the limbs and other extremities, but all the upper motor neurons run from the brain on down the spinal cord and pass through the cervical region where the syrinxes most often are. So obviously problems up here - pressure, kinks, etc. -- can cause problems in the lower part of the body as well as the front half.

That is weird that Maxx's syrinxes are down at the base of his spine -- down by his tail?? I've never heard of that.

The study I"m taking Rory to is just looking at the skull area. She kept saying they are looking for the chiari?? I assume she meant chiari malformation... If he has it i'm sure i'll have to redo the MRI which is annoying...

rory
3rd August 2005, 04:24 PM
Question:

rory seems to scratch a LOT in the mornings. I always wake up to him scratching his head or neck -- sometimes belly. Does the scratching tend to be worse in the mornings?

Jen
3rd August 2005, 04:41 PM
Yes, I've read that sometimes the scratching can be specific to times of day, weather, etc. My vet asked those kinds of questions, but Abbey's is the typical excitement situation--when we come home from work, when she gets in from going potty (treat time), etc.

Karlin
3rd August 2005, 05:33 PM
I think often it can be worse in mornings because they have been sedentary then when they start moving it creates some pressure and they get the immediate sensation and then scratch. That said allergies can do this and also PSOM would likely be more noticeable when they first wake and 'notice' it again.

Lorraine I didn't notice Ricky had too odd a stance; he was just very long-backed. I kept an eye on him for the several days he was here and he seemed fine; nothing noticeable.

Rory the syrinxes often go all the way down the spine kind of like a string of pearls. If they are extensive then often the neuros feel the dog is not a candidate for surgery. I think if they are doing the skull MRI it will take in the neck area too which should reveal any syrinxes to you. It is rare for them to be only at the end of the spine and not to start from the top where the pressure first builds. Thats says someone on the Chiari list has definite SM symptoms with ONLY the malformation and no syrinxes at all. It seems symtpoms are often not related to the severity of the syrinxes at all. Some really severely affected dogs have had few outward symptoms and vice versa. It is such a msytery as a condition...

Maxxs_Mummy
3rd August 2005, 07:33 PM
OK then, Maxx had an x-ray or should I say twelve x-rays - none of which showed up anything much at all.

When he had the MRI there was one clear syrinx right down the base of his spine - yes, almost at his tail. I don't know how rare this is but Mr Skerritt didn't seem to think it was odd.

Maxx does have a slight malformation (the Chiari bit!!!!) and also has a herniation - now I can't remember if this is cerebellar or not.

Maxx gets scratchy first thing in the morning, around about dinner time (7pm ish) and also when he gets excited.

If I can be of any help at all just shout - I hope Abbey's MRI is OK. Abbey is Maxx's Mummy dog's name too :)