Talked to my Vet today about SM

Well, I took Lily for her last round of shots today. She only cried a tiny bit, nothing like last time. I let him know that she was throwing up after last shots, which he thanked me for. He gave her something this time to counteract this. She is playing like a mad woman right now, nothing like the last time, when she slept the rest of the day.

I talked to him about SM, but told him I wanted nothing mentioned in her chart, as it was off the record, because my insurance was not in effect yet. He said, no problem. He got his medical journal, because he is not familiar with SM. It only metioned Weimaraners (sic). Isn't that weird. Probably was an older book. Anyway, I told him about the neurologist at Auburn Vet School that Karlin told me about, and he said he is wonderful, and was there when he was in Vet school. He said all I would need is for him to call the neurologist, in order for them to see her.

He has 4 other Cavs that he treats, and when I told him about SM symptoms, he said he is treating these Cavs for allergies with the symtoms I mentioned. They even yelp when they start scratching. I didn't day anything, but......I was thinking that maybe these dogs have SM and not allergies??? It would be great if Lily only has allergies, I would be thrilled. But does anybody like me, think this is strange about the other Cavs?

That's great you felt able to talk to him and he is so supportive.

Weimeraners get a different type of SM not related at all to what cavaliers get except that the end result is syrinxes (hence *syringo*myelia). In weims and some other breeds this is a known genetic problem that is the equivalent of spinal bifida in humans -- it occurs because the spinal cord doesn't form completely.

In cavaliers with the Chiari-like malformation (and in humans with actual Chiari malformation) ther syrinxes form due to the progressive results of problems caused by the skull malformation -- eg not enough room in skull for the brain, which then blocks and often is forced into the opening for the spinal cord, causing pressure problems with the circulation of cerebrospinal fluid which in turn causes syrinxes to form (exact reason why not understood fully).

Give your vet the link to http//:sm.cavaliertalk.com

and also please print out and bring him the information sheet, symptoms document, and treatment diagram. All are available as downloadable documents on the relevant sections of the website. Vets are very unfamiliar with SM (as are many neurologists) and this is a good way to inform them of this serious condition that is showing up particularly in cavaliers.

The single most common misdiagnosis for SM is allergies. If they are yelping when scratching and showing any other symptoms on the list these other cavaliers should be referred to a neurologist *if* your vet cannot find any other reason for their problems and they do not respond to any other treatment.

That is exactly what I thought Karlin, about the other Cavs. I told him as soon as my insurance kicks in, I will formally bring her in for symptoms and I intended to bring him the information I had then. It seems from talking to him that he is just going to refer me to Auburn. Do you think this is the right approach or should I let him check her for other thing first. I would rather just go to the heart of the matter, but I'm not sure what the insurance company will say if I straight away try to get an MRI. What do you suggest?

Thats a bit sad about the other cavs been treated for allergies if it's SM. I don't understand why general practice vets continue to treat (long term) dogs for allergies without sending them for skin testing to find out what is the cause or elimination diets for food allergy ?

I know people would immediately say cost....... but the cost of using different treatments on a trial and error basis, antihistamines, special shampoo, fish oil etc etc trying to find something that works is just as costly.

Good on you for thinking to mention it, it would be good to get the info to your vet asap for the other cavs and I really hope they do just have allergies

I agree....What is so shocking to me, is how little Vets know about SM in the US. I had never owned a Cav before and only started researching this breed a few months ago, and I know way more than the Vets, which is virtually nothing. I guess in their defense, I would know absolutely nothing about it if not for this site. But they are the professionals. I wonder when and if they will become educated to SM. My Vets are great Vets, but it is frustrating having to discuss something with them that they know nothing about, and you kinda think they are thinking you might be a little wacky. What is that disease, , oh I can't think of the name, something by proxy, where the parents are making the child sick for the attention. It almost feels like that when you start trying to tell people about the disease. It makes you almost feel like they think you are making it up for attention. Maybe that's just how I feel. You look at the Lily and she is the picture of health, and you begin to think, am I crazy and just imagining everything she does is a sign or symptom. I would rather have her tested than wonder all her life if she has it, and then wait too long to be able to have surgery, if that is an option.

munchausen's by proxy.

I know exactly what you mean with that one. I have felt like that on several occasions but stick to my guns as am a firm believer in better to be safe than sorry.

shay--i relate to what you're saying. I've encountered this in human medicine too. sometimes you have to assert your concerns even when you know you may be seen as crazy. Also, it happens in many cases that patients know more about their diseases than their doctors do, if it's something new that they didn't learn about in medical school. It's a weird feeling to be in that position. For me, it separates the good doctors from the bad, the way they react to patients who have more information and knowledge about certain things than they do. It sounds like your vet has an open minded attitude and wants to learn. no wonder you trust him. Maybe you have helped him to help other cavaliers by raising his consciousness about a diagnosis he wasn't familiar with before.

A vet is only a general practitioner. SM is generally a very, very rare condition -- EXCEPT in this breed. Even a neurologist might only see a couple of cases in a lifetime until the past few years when the condition has really accelerated in frequency and severity in cavaliers. Cavaliers are still not a common breed in the US so the likelihood of a vet having heard of SM in the breed or even many neurologists is actually quite small.

Keep in mind that you would not expect your GP to be able to diagnose a tropical disease, a cancer, or a rare autoimmune disease. GPs and vets are RIGHT to consider and treat for all the more likely and obvious conditions first and they simply cannot be expected to have specialist knowledge -- this is a very unfair expectation. When they exhaust those possibilities, or if symptoms are highly suggestive of something more serious, that is the time for them to do a referral to a specialist.

Shay, if your vet feels there are now no other conditions that might account for the symptoms you describe and the things he has seen with Lily, then he should refer her. If he feels there are other things to look into, then he should do that first. Almost all cavaliers are probably going to MRI with the malformation, and many with syrinxes as well, though most will not have symptoms. Hence you really want to be sure that symptoms are not due to anything else. He should not make a referral until he has examined all the material on SM and considered whether he thinks this is the time to refer her to a specialist.

Karlin said:

Keep in mind that you would not expect your GP to be able to diagnose a tropical disease, a cancer, or a rare autoimmune disease. GPs and vets are RIGHT to consider and treat for all the more likely and obvious conditions first and they simply cannot be expected to have specialist knowledge -- this is a very unfair expectation. When they exhaust those possibilities, or if symptoms are highly suggestive of something more serious, that is the time for them to do a referral to a specialist.
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The career of a veterinarian is one of continuing education for life. There are new diseases, new treatments, new research every day. Most vets subscribe to the big journals and try to keep up, but there are always going to be things they haven't heard of YET. Doesn't mean they're a bad vet or they don't keep up - it just means it's new or rare and they haven't heard of it yet. But judy's right in that a good vet should listen to what you have to share and listen to your concerns and do their research so they can provide the best care for your pet. This may mean learning something new! Sounds like Shay's vet did just the right thing by listening to her and looking it up. And as was clearly demonstrated - SM due to Chiari-like malformation is a really new disorder that is just now being researched and learned about by the experts in neurology. Slowly over time this information will get down to the GPs. Some sooner than others -- and certainly those who's clients bring them information will learn on a much steeper curve than those who don't have patients that have it or if they're not aware of it.

I'm in vet school right now and we've had SM and Chiari-like malformation mentioned a couple times this year, but 2 years ago when I asked my prof about it he said, "Oh, that's really rare. And only in UK Cavaliers." But he DID go look up a bunch of info on it for me! (granted, info I already had, but he was proactive and realized he didn't know everything there was to know about this condition so he went out and educated himself THAT NIGHT and came back the next day with a stack of papers!) Two years later they've seen so many more cases and he has come back with a much different attitude about it. Not to say he was ignorant or wrong before - but it just wasn't known about to the same extent or frequency as it is now. One neurology professor said, "If you haven't heard about chiari-like malformation yet, YOU WILL. It's a very hot topic and increasingly prevalent."

It'd be different, even, if this were in labradors or goldens that vet see 10 of a day, but it's really only this prevalent in Cavaliers which are still not as common as most breeds.

And about the Munchausen's by Proxy -- I don't think many people are really this deranged. So it's rather unfair of vets or others to make this assumption or to just think an owner's neurotic. I hate that. Owners know their pets better than anyone else and are often perceptive of early, small changes that can be very important in early diagnosis. People totally thought i was making up rory's symptoms because he didn't do it around other people as much. He scratched mostly in the morning or at night. And being a vet student, everyone assumes yu're just neurotic and going to give your pet whatever disease you're learning about at the time. :roll: Aaaanyway... I got a free harness out of the deal by making a bet with someone before he had the MRI!

Anyway - I'm glad that your vet was open to your info, Shay, and is willing to look up info and refer you. I don't know that I'd waste too much time with allergy testing and elimination diets which can take 8 weeks minimum. Maybe ask about trying antihistamines and see if she responds to that at all which might indicate an allergic component (but won't rule it out if she doesn't respond). I dunno.

Hey...Thanks Rory!! My Vet's are the best in he city, and I have said in earlier posts, they have saved my Lhasa's life more than once. I have used them for 13 years, and would never think of switching. Only if it was a Vet that had treated SM before, but I don't think that will happen in Birmingham. We have a very good relationship, my Vet and I, and I knew I wouldn't have a problem getting a referral. I just wish they knew more so you could talk to them about the condition and they knew what you were talking about. I guess this will come in time.

Question for you...If the neurologist does determine that she has the malformation, who treats her then? The neurologist or my Vet.? If I choose not to have surgery, who would determine the medication, etc.? Would the neurologist confer with my Vet for a plan of treatment? I know this is presumptuous as we don't know that she even has it. Just being pro-active. As far as he allergy thing, I have changed her diet thinking that might help with the itching, but it didn't, could be that she needs an Ultra Allergen food like my Lhasa has been no since she was a year old, if she does have allergies. She had her last shots yesterday, and I told my Vet that the last time she got her shots, she was sick (throwing up) he gave her some benadryl, and said he will never give her the lipo. That is the one my Lhasa had that caused the anaphylactic reaction and I had to rush her to the emergency room. Wow, what a nightmare that was. Her throat had almost totally closed up by the time I got her there. Face and muzzle was swollen to 2x normal. Anyway.....back on point here, her itching was really bad last night, and she had that benadryl injection yesterday. So.....was the increased itching from the vaccinations, or did the vaccinations make the SM, if she has it, worse? So many questions, and so confusing. Her scratching last night was the worse it has been. It seems a little better this morning.

it's certainly possible that the symptoms were caused by or worsened by the vaccination. There's no way of knowing for sure, but it's not unreasonable to seriously consider the possibility. i hope whatever is causing the increased scratching, it is going away by now.

If the benadryl didn't help, that might suggest her scratching is not a symptom of an allergic reaction, either from the vaccine or from whatever was already going on--but again, you can't say for sure from one dose of benadryl. It's interesting that you said she was energetic. The benadryl didn't make her drowsy. I hope her worsened scratching has passed by now. ?

Thanks Judy...her scratching is better today. The benadryl did seem to make her hyper. Last round of shots, she spent most of the day sleeping. This time she slept for about an hour, and when she woke up she was a wild child!!!!. She did laps and figure eights around here for an hour. I finally had to put her in her crate to settle her down.

If the neurologist does diagnose SM, you would probably continue to see him/her to treat the SM, since he/she has the best info/knowledge/expertise on the subject. You can probably get meds from your regular vet or from a pharmacy (we were getting Rory's from Costco for cheap, but they now carry gabapentin at the vet school hospital so I got it there last time).

Keep in mind that your neurologist may also have limited knowledge/experience wiith SM. As I said, it's still pretty new and very rare in any other breed besides Cavaliers. If you do decide to pursue surgery, you may chose to do what I did and travel to the most experienced neurologist you can find. I went to Tacoma (from Northern California) to have Rory's surgery doone because the vet up there has done a lot of these surgeries and has much more experience than they did at UC Davis, even. I figure if I'm investing this much in a surgery, I want to maximize my chances of having it done right.

I hope she's feeling better soon. Just a few more days until the 13th, right? Do you have an appointment made?

Vaccinations are not known to worsen SM symptoms in any significant way and the reactions when I've heard of possibilities, would only be very shortlived, mainly discomfort or pain in the area of the vaccine. This has been endlessly discussed on the lists and no researcher knows of a single significant exacerbation caused by vaccines. In their words, vaccines have no impact on SM either before or after. The physiological causes of SM would have no relationship to how vaccines work.

The neurologist that Shay is going to go to is familiar with SM.

Benadryl tends to help/mask milder SM symptoms so if scratching is worse that is likely an indicator that this has probably has nothing to do with allergies.

This is the best and most honest advice I can give you: If you definitely are seeing the range of signs you have mentioned then I fear you will be very likely get an SM diagnosis and will likely also need to make some quick and serious decisions, so just be prepared with as much knowledge as possible going in to the neurologist and be clear in yourself on what basis you would make the decision for surgery. Such symptoms in a young cavalier are not really treatable beyond the short term with medications. Progression is variable but if clear symptoms are showing before age 2.5 and especially at younger than one than that will likely only leave very limited options, as I noted back in earlier posts: surgery for a chance at a longer life, or short to medium term hospice care. I know this is very blunt but IF you get an SM diagnosis from the neurologist he may well recommend making a decision on surgery within days or even immediately -- it is much, much better to have thought through the options and your own feelings on this before you are facing such an emotional decision and to know what you want to ask regarding this option, and if you wish that neurologist to do the surgery.

Let's hope this isn't the issue, but it will be much easier to have thought thru all this in advance of seeing the neurologist especially given the symptoms you have described over time, which are sounding like they are possibly going to give an SM diagnosis with early onset.

Rory and Karlin.....Thanks for your replies. Lily is still scratching, and biting at her paws. It is better, but still there. But it did spike after her vaccinations last week. Perhaps she was allergic to vaccinations, but the benadrly did not work for her. She is scratching at her ear now, and opening her mouth as if yawning, like you would do if on an airplane and your ears were blocked. She shows absolutely no tenderness in the head or neck area at all. No yelps for no reason in quit a while. She shows no sign of being in pain. Would this mean if she has SM that if she were pain free, that maybe she would only have the scratching and nothing more?

Would the only thing that would work for her because she is so young be surgery? If she did not have the surgery would the outcome be fatal?

Only a neurologist can answer these questions on the basis of a diagnosis and MRI.

SM pain comes and goes. The fact that you have had a lot of yelping especially at night, scratching as well at night, and have noted air scratching is really what would concern me. All these are indicative of Sm rather than many other possibilities but you have to get a diagnosis. Early onset is not good and offers the fewest options but there are not many options anyway and it is always a waiting game whatever the choices. In this sense however SM is not much different from any serious diagnosis for a progressive disease but you need to make sure this is what you are dealing with. Just go with as much knowledge as possible and knowing you may have to make some very fast and difficult choices.

Thanks Karlin....I forgot to mention in my earlier post that Lily threw up again 2 days after the last shots. I think it was Thursday night. I told the Vet that she did this the last time, and he said normally it would affect them within hours, so it was probably not the vaccination, but he did give her the benadryl. I just think that is more than coincidence that she threw up both times and both times it was 2 days later, very strange. Don't know what it means though, but I have to think it had something to do with the vaccinations. She has never thrown up since we have had her, except for those 2 times.

I do think reactions sometimes occur not just immediately after the shot but later, and i don't think much is known about this subject. the vomiting could possibly be a later event in a systemic reaction. zack seemed fine on the day of his last vaccination shot. the next day, he acted like he didn't feel well, and wanted to lay on me a lot, and had extreme tenderness in the back leg where he got the shot, he seemed a bit feverish, though i didn't have a thermometer to check it. I called the vet and they said that this was normal and would likely continue on for a few days. But he seemed fine the next day. But he had a relapse of colitis a few days after that that he had been seemingly successfully treated for.

Which vaccinations did Lily have?

Here's a link to a summary of adverse reactions for various vaccinations:

http://www.peteducation.com/article.cfm?cls=2&cat=1713&articleid=962

Here's an excerpt from an article by vaccine researcher and immunologist Ron Schultz:

(from Considerations in Designing Effective and Safe Vaccination Programs for Dogs (Last Updated: 5-May-2000))

The risks of adverse reactions from vaccines are not well studied, nor are the adverse reactions rates well documented. Even where documented, the information is not readily available. The immune mediated hypersensitivities caused by vaccines are well known and occur in every species [4,10,11]. The most commonly observed hypersensitivity is a type I (immediate) reaction which is most often caused by IgE antibody resulting in a local or generalized anaphylaxis. The most common signs of local reactions are facial edema, hives, itching and rarely sneezing; signs of a systemic reaction include urination, vomiting, diarrhea, which is sometimes bloody, dyspnea and collapse. According to a recent survey we have conducted, the most common vaccination reactions observed in dogs include pain, soreness, stiffness and/or lethargy at variable times after vaccination. Swelling, a persistent lump, irritation, hair loss and/or color change of hair at site of injection were also observed as common reactions. A change of behavior was reported in a small percentage of dogs after vaccination. Post-vaccinal neurologic disease (e.g. encephalitis) was rare. All of the reactions noted above generally occur within minutes, hours or days after vaccination; they were, therefore, likely to have been associated with a vaccination. More recently, it has been shown experimentally that dogs develop an autoimmune response after vaccination, something that was known to occur in other species [11].
Furthermore, a study of dogs in veterinary clinics showed a slight increase in cases of autoimmune hemolytic anemia within 30 days following vaccination with multi-component vaccines [12]. It is very difficult to document a "cause and effect" relationship between vaccination and disorders occurring weeks to months after vaccination, but it would not be unexpected for vaccines to trigger immune-mediated disease (including autoimmune disorders) in a small percentage of animals [4, 5, 11,12]. Adverse reactions from vaccines should not be used as a reason not to vaccinate; instead, it is sensible not to use vaccines which are unnecessary, or to vaccinate more often than needed. In general, bacterial vaccines are more likely to cause immune-mediated reactions than do viral vaccines. Killed vaccines, especially those which contain adjuvants, are more likely to cause adverse reactions than do modified live vaccines. Because immune mediated reactions are genetically determined, some breeds, especially certain families of dogs, are at much greater risk of developing adverse reactions than the canine population as a whole [4]

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Shay -
How's Lily doing?

Can I remind people that this is a thread on SM, not vaccines, and there is no connection between vaccinations and SM; not a single researcher believes this to be the case and until someone shows some evidence otherwise I won't allow speculation about something so serious.

Dogs vomit all the time for a range of reasons. Linking it to a vaccine a month earlier is incredibly spurious when there are many more likely and obvious immediate causes -- eating grass, upset stomach, etc etc etc, esp. in puppies which often vomit a LOT. Leo vomits regularly, always has, for example. So do two of my cats. They haven't had vaccinations in two years plus. Why do they vomit? I don;t know. It doesn't worry any of my vets, it is just a minor and occasional housecleaning issue for me!

There is not one significant statistical piece of evidence that vaccinations contribute to the vast repertoire of illnesses that are regularly ascribed to them, either. There are known reactions at the site of injections, and some other rare responses, as the link you offer shows -- you will find even MORE 'adverse reactions' to aspirin, for goodness sakes, and a lot more common, too, but I bet everyone here pops those and various other NSAIDS with little concern for those! -- but please, PLEASE do not misdirect this quite serious discussion onto the old vaccine canard. I am fine with discussion on whether or not to vaccinate or use nosodes and totally understand the argument for using nosodes especially in some specific cases (though I wouldn't use them in most cases) but I absolutely will not tolerate moving a serious discussion on someone's puppy that may be showing signs of SM into a vaccination sideroad. Shay has a lot of potentially serious things to think about and vaccine reactions causing SM is not one of them.

Regarding the quote above, adverse reactions actually ARE pretty well studied (as the very link you post to the DR Foster&Smith site shows!)and have been studied in humans and other animals for decades (not least because a whole range of vaccines for humans were developed ober many decades from animal testing) and I get really tired of sites that claim this isn't the case. There are plenty of internet discussion lists for the vaccine conspiracy theorists and I direct anyone wanting to discuss this aspect further to go there as I won't tolerate them here. If anyone wants to offer such perspectives in future please privately PM the relevant person but I don't want people, IMHO, potentially misled by guesses as to the possible side affects of vaccines and whether they cause things like SM. I realise this topic is some people's passion but it is one of my passionate hates. People are welcome to take the conversation elsewhere if they have problems with this.

Conversation over; I don't want any further replies relating to vaccines on this issue.