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Update: Cavalier that had heart murmur at age 1 year 3 months, now think SM...

Thank you to everyone who replied to my previous thread regarding Ellie with her grade 1 heart murmur. I have read each and every one of your responses and they are all very much appreciated. In my original post, I noted that Ellie has "allergies", as I kept reading the board I noticed more and more that her symptoms seemed like SM. Please forgive me for not responding as the past month has been completely overwhelming in regards to first being diagnosed with early onset MVD and now presumed SM. I have an appointment with Dr. Marino's colleague (Dr. Loewn's - not sure if spelling is correct?) at LIVS next week. I am hoping she can be a part of his study, get the mri/work up, and then decide from there if surgery is best. If anyone has had any experience with Dr. Marino and/or his team and could share the experience on the board/private message me it would be greatly appreciated. Further, if anyone has had experience with surgery in general or knows of anyone else that is highly recommended in the NY/NJ area it would be very much appreciated. I have been thinking greatly in terms of whether or not I would want to proceed with surgery and do not have a great answer. Should I try medical management first and see how that goes? Should I get a second opinion from Clare regardless of what Dr. Marino and colleagues say? Mesh or no mesh? The cardiologist is recommending another echocardiogram in 6 months to see how much her heart has progressed, im not even sure how to include that in my decision making of surgery vs no surgery. I guess I am just rambling now and am completely overwhelmed/scared/upset/angry.

my thought process of surgery vs medical management:
surgery pros
- may stop the progression
- may halt the pain..i guess same thing as progression

surgery cons
- scar tissue
- death during surgery
- progressive pain anyway
- surgery not working
- complications from surgery
- need for another surgery
- anesthesia, even though cardiologist said she was ok for anesthesia
- MVD may progress and this was for nothing...
- may take away some of her quality of life in terms of recovery period

medical management pros
- no surgery
- hopeful for meds to control symptoms
- can live comfortably until she can't
- can control pain


medical management cons
- lost the opportunity to get surgery during optimal time period
- may not work
- having to watch the inevitable degeneration and feeling like "what if I did surgery"


I wish someone could just say the surgery worked and I would just do it...this just seems to be a high risk surgery for not necessarily a great outcome..i dont know..i am just angry/sad/devastated...if anyone has any suggestions/advice etc i would appreciate it..

As a side note: As you can see from my previous post, I now have a 1 year 5 month old cavalier with early onset MVD and SM...anyone have any advice as to how to approach the breeder (already knows about the MVD, not about my concerns for SM yet)


In case anyone is interested in Ellie's symptoms for future diagnosis here is her list:
Scratches her face, neck, sides excessively on both sides
Bites at paws on both sides
Bites at back on both sides
Yawns
Sneezes (not sure if this is particular to SM)
Licks (not sure if its "excessive")
Has never yelped or had noticeable weakness in her extremities, though our regular vet examined her and noticed her reflexes in her left ear is diminished somewhat and slowness in left hind paw
 
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Hopefully, several with CM/SM experience will jump in to answer your questions. LIVS is an excellent choice. Dr. Catherine A. Loughin is not a board certified neurologist. She is a board certified surgeon, as is Dr. Marino. Read about her here: http://www.livs.org/index.php?option=com_content&view=category&layout=blog&id=80&Itemid=160

Some cavalier owners have suggested that LIVS has been a little quick to recommend surgery. In view of that, I would ask Dr. Loughin what input your dog is going to receive from any of the neuros on LIVS' staff. They are Drs. Dewey and Bilderback. A well-done MRI should tell you a lot more about Ellie's condition, and may even show no SM. But, CM alone can cause pain, and after all, the surgery is designed to remedy the CM, not necessarily the SM.

I would not tell the breeder about the SM until after the MRI.

As for the MVD, the current recommendation of a leading cardio, Dr. Mark Oyama of PennVet school, is to not do periodic echos as a general rule. Instead, he recommends periodic auscultations and x-rays. He says that the echos normally are not needed unless and until the auscultations and x-rays show rapid changes in the sound of the murmur and enlargement of the heart.
 
Rod,


Thank you for this information, it was very helpful, I was going to call LIVS today to find out how to spell Dr. Loughin's name and thought the link you provided was her!


Would you or anyone else for that matter first recommend seeing a neurologist and then seeing the surgeon? Right now Ellie is not on any medication, I am going to call LIVS and make sure its ok to start something before they see her/prior to any imaging. My regular vet said she would start her on omeprazole right now if they were ok with it.


I live in NYC, Dr. Chad West at AMC was recommended to me in terms of neurologist, anyone have any experience with him? I am not sure of the importance of seeing the neurologist prior to the surgeon or if the surgeon is adequate to initiate medications. My vet did a pretty thorough neuro exam.


I am aware Dr. Marino's recommendation is usually surgery which is why i was hesitant to see him initially, but i have heard he is one of the best. I know regardless of his and Dr. Loughins recommendation that I need to make my own informed decision which I guess that is why I am here asking for advice and if there is any one else that perhaps I should seek a second opinion from. Perhaps Clare? Would a neurologists opinion also be helpful or another surgeons opinion?


In regards to the echo, I had the same question. Dr. Petrie did the echocardiogram and it showed mild tricuspid regurgitation and trace mitral regurgitation, he said since it is congenital and not acquired and since she was diagnosed so early is the reasoning behind wanting it in 6 months. This doesn't necessarily make any sense to me but apparently there is some sort of distinction between follow up echos if it is congenital vs not? I did bring up just doing yearly chest xrays and my vet did say she will speak with him about this to find out why he recommended the echo in 6 months.


Thank you again all.
 
Riley, my SM dog, had a craniotomy with a titanium mesh implant 5+ years ago and it was the best decision of my life, although I wasn't sure of it at the time. I did get a second opinion from another neurologist before surgery. I would definitely recommend seeing a neurologist before seeing a surgeon. Many dogs are managed lifelong on meds. Riley however did not respond at all pre-operatively to any meds. Post-operatively, Riley has been one of the lucky ones. Her life since surgery - after a rocky 6 months while we adjusted her post-op meds - has been amazing. She is my wonder dog. She's definitely handicapped because she had the surgery late (she was almost 6 years old) but she loves life and nothing holds her back. Whatever challenges she has, she picks herself right back up (literally - she falls often) and goes right on as if nothing happened. Without the surgery, I doubt she would be alive. Oz, my dog with the congenital murmur (grade 1) has had dental cleaning with anesthesia without incident. His cardiologist assured me he would be fine for any surgery. So, if Ellie's cardiologist clears her for surgery (if you decide to go that route) then I wouldn't worry. Hope this helps.
 
I just bumped a past thread (titled "opinions on getting a second mri") up that has some comments about Dr. West. Irene (mom of Jack) uses Dr. West, so you can use the search function and read about their experiences.

Pat (in Atlanta)
 
FYI- ellie is clear from a cardiology perspective to have anesthesia

Love my cavaliers- a truly great surgical outcome, i can only hope if we opt for surgery that we would be as lucky, i have read a lot about Riley and she seems to really be a trooper and am so glad she is doing well

Pat- thank you very much for bumping the thread with Irene's experience, I wonder how Jack is doing. From her most recent post he seems to be managing fairly well medically.

The more I am reading the more it seems like I should at least TRY medical management, meaning i should at least TRY the medicines and see what happens. It seems if that fails, or if the symptoms progress fairly rapidly people have opted for surgical management. Please correct me with your experiences if I'm wrong. I think I need the mri to help steer me which I can hopefully get the same day of my consultation if I am allowed into the study.
 
Looking through your details, I will say this. LIVS are primarily a surgical centre with a surgery-oriented perspective. I have never heard of them recommending meds instead and they always feel surgery should be done asap. If opting for surgery, I think they are an excellent choice. There's also a possible argument that opting for surgery earlier prevents or at least inhibits the possibility of serious deterioration from the SM and therefore may produce a superior overall result for dogs that would otherwise decline.

However, that said, I do feel they are extremely aggressive on recommending a surgery that is very invasive and which may well not have been really needed. Other neurologists advise opting for surgery when other approaches no longer work or in the case of a really poor MRI that suggests there will be serious problems ahead. Set against that, the fact that many dogs with severe and multiple syrinxes seem to manage fine with meds. So it is very hard to predict how and whether a dog will progress (they almost always progress but it may not result in severe pain...).

I also feel the success of their surgery is overstated. I am not suggesting this is deliberate -- perhaps it is that many owners do not continue to followup -- but almost every dog I know of that has had the cranioplasty there remains on some level of meds anyway, generally gabapentin. Some have had very long and distressing recoveries from that surgery. Some end up being euthenised. I have not really seen those cases reflected in the reported results however and I wish they were as they would give a more varied response and perhaps cause more to consider medical management.

If I were in your shoes I would definitely go with meds for now. You have a dog with a possibly serious heart issue already that you are still exploring... and I'd not really want to also put her through a stressful surgery that might not add much to quality of life, while pushing her into a lengthy recovery (it is a fairly long, managed recovery with much crate rest).

A lot of neurologists do not think there is necessarily an optimal period for surgery. Many of us manage dogs with various degrees of success with meds. Three of the five cavaliers I have/have had, have SM. One is serious enough to have been on meds since around 2. He is now 10 and has a very good quality of life. He has a grade 4 heart murmur and I feel his heart is more likely to be the final health issue, than the SM. He has been MRId twice and the syrinx is large but fairly centred (Lopsided syrinxes cause the most pain) -- he has progressed and I've had to raise his meds but he has only ever had one severe pain session and in retrospect I believe it was because he fell off a bed and hurt his spine, and not related to the SM (except that the SM makes him a bit wobbly and that is why he fell...). The other two are also in the age 8-9 range and have never needed anything but cimetidine which can be bought over the counter. I am sure if I were in the US and had gone to LIVS, that all three would have been advise to have immediate surgery.

I have met Dr Marino several times at conferences in the UK and fully respect what he does but am simply of a different perspective on whether all these dogs need surgery.

I think once you have an MRI you will have a better sense of what is going on. I agree with Rod that I'd not go to the breeder on this til you have the results -- then I'd send a copy of the full report.

I am really sorry that you have both these issues before you but all I can say is that very often there are far more options and routes than at first seem clear and to try not to panic and feel there aren't any options. I've had a house full of SM cavaliers for a decade and also have half of those with heart issues too -- while the ultimate goal must be to curtail and ideally eliminate these widespread conditions some day, and to push for better breeding practice (which I think will mean mandatory testing of breeding dogs to ever work), dogs are all very individual in how they respond and proceed. I spent much time panicking that my first cavalier had SM; when it turned out on MRIing both that it was his symptomless half brother who was affected. That was months of distress for no reason, over the wrong dog. I learned from that, to be sure I understood all the options, to weigh them in an informed way, and -- in my case -- proceed conservatively.

My late father was an emeritus professor of medicine at UC Davis and Stanford, and gave me wonderful advice at that time. He noted that surgeons will always see surgery as the best option, because that is how they naturally view things. His own approach was to take the most conservative option, especially in the case of poorly understood conditions like SM. I was advised privately by Dr Clare Rusbridge, who does feel that unless there are strong reasons to choose otherwise, go with meds first and see how that works. I am glad I took that route -- but of course, you always wonder would things have been better with surgery etc. I will say that costs work out the same or perhaps more expensive for meds over time... but not if a surgery dog ends up on meds anyway, as many do.

Decisions are very, very personal and many things go into making a decision. I would agree with people above that if you end up with a surgery recommendation, to go for a second opinion with a neurologist not as inclined to go for surgery, regardless of the result of your MRI.
 
I can't say anything about the pros and cons of surgery, since my two CM/SM dogs are both managed pretty well with meds. But I am a bit puzzled that the cardiologist seems to be fussing about Ellie having a grade 1 heart murmur at almost 18 months old - and why does he appear to think it needs special treatment because it is congenital not acquired - it almost always is with Cavaliers! It almost sounds as if he has never encountered the Cavalier's special brand of early onset MVD before (many older dogs of all breeds get MVD, Cavaliers are special because they get it early). My rescue Cavalier Aled had a grade 1 murmur when I got him at 18 mths and nobody seemed to bat an eyelid! A grade 1 at around that age seems to be quite common and not regarded as unusual. Now aged 6, Aled's murmur has progressed to a grade 4, but he still has no symptoms and is on no medication; he has auscultation annually to keep track of the murmur but nothing else. Sadly, as you know, the majority of Cavaliers will have a heart murmur by the time they are 5, and as Karlin says, we need to be working to eradicate MVD, but at Ellie's present level, her MVD appears to be in no way as serious as possible SM, so try not to worry about it. Just worry about one thing at a time! (y)


Kate, Oliver and Aled
 
Search the blogs, I seem to remember reading a blog about a cavalier and owners going through the surgery recovery period. It might give you some prospective as least.
 
... In regards to the echo, I had the same question. Dr. Petrie did the echocardiogram and it showed mild tricuspid regurgitation and trace mitral regurgitation, he said since it is congenital and not acquired and since she was diagnosed so early is the reasoning behind wanting it in 6 months. This doesn't necessarily make any sense to me but apparently there is some sort of distinction between follow up echos if it is congenital vs not? I did bring up just doing yearly chest xrays and my vet did say she will speak with him about this to find out why he recommended the echo in 6 months.

If the tricuspid regurgitation is more pronounced than the mitral valve, and since Dr. Petrie called it "congenital and not acquired", I would follow his recommendation about when to re-examine with an echo.
 
Karlin- thank you for you for your thoughful response. basically what you are saying is where I am coming out - why do surgery when we have this heart issue and why not at least try medical management. I really do not want Ellie to have this long drawn out recovery with complications just to find out her heart has progressed and I took away her quality of life for the time she did have. How many dogs do you know that have gone through the surgery with Dr. Marino? This is what I am most interested in finding out when I meet with LIVS, how they keep track of how the dogs do in the long term and what outcomes they have.

Kate- thank you for the words of encouragement! yes, that was my thought, however, i don't know if its perhaps the fact that the echo shows both tricuspid and mitral regurgitation? im still waiting for a response from my vet for an answer to this

Momobvious- thank you, yes i have read through numerous blogs specifically these three: http://rileybeatssm.blogspot.com/, http://abbeygeorgelinda.blogspot.com/, http://fightforella.blogspot.com/

Rod- what makes you believe to go by his recommendation? I am still struggling to figure out why the follow up in 6 months via echo vs's yearly xrays? I will let you all know when I hear back from him as to his reasoning. That being said, does anyone have a good cardiologist in NYC? I never actually met Dr. Petrie - he comes to my vet once a week to do echo's, reading of chest xrays, and auscultation. My vet acts as a liasion between myself and Dr. Petrie and think it may be best to have a cardiologist I can speak with myself.

Thank you all - it has been very difficult to get opinions from friends and family as they sometimes don't understand the disease processes and even if they do, it is hard for them to be objective as I am telling them the information I know from researching, not from there own research, so thank you for everyone who has posted not only on my threads but on previous threads as well.
 
Karlin- thank you for you for your thoughful response. basically what you are saying is where I am coming out - why do surgery when we have this heart issue and why not at least try medical management. I really do not want Ellie to have this long drawn out recovery with complications just to find out her heart has progressed and I took away her quality of life for the time she did have. How many dogs do you know that have gone through the surgery with Dr. Marino? This is what I am most interested in finding out when I meet with LIVS, how they keep track of how the dogs do in the long term and what outcomes they have.

Kate- thank you for the words of encouragement! yes, that was my thought, however, i don't know if its perhaps the fact that the echo shows both tricuspid and mitral regurgitation? im still waiting for a response from my vet for an answer to this

Momobvious- thank you, yes i have read through numerous blogs specifically these three: http://rileybeatssm.blogspot.com/, http://abbeygeorgelinda.blogspot.com/, http://fightforella.blogspot.com/

Rod- what makes you believe to go by his recommendation? I am still struggling to figure out why the follow up in 6 months via echo vs's yearly xrays? I will let you all know when I hear back from him as to his reasoning. That being said, does anyone have a good cardiologist in NYC? I never actually met Dr. Petrie - he comes to my vet once a week to do echo's, reading of chest xrays, and auscultation. My vet acts as a liasion between myself and Dr. Petrie and think it may be best to have a cardiologist I can speak with myself.

Thank you all - it has been very difficult to get opinions from friends and family as they sometimes don't understand the disease processes and even if they do, it is hard for them to be objective as I am telling them the information I know from researching, not from there own research, so thank you for everyone who has posted not only on my threads but on previous threads as well.
 
... Rod- what makes you believe to go by his recommendation? I am still struggling to figure out why the follow up in 6 months via echo vs's yearly xrays? I will let you all know when I hear back from him as to his reasoning. That being said, does anyone have a good cardiologist in NYC? I never actually met Dr. Petrie - he comes to my vet once a week to do echo's, reading of chest xrays, and auscultation. My vet acts as a liasion between myself and Dr. Petrie and think it may be best to have a cardiologist I can speak with myself. ...

I suggest following Dr. Petrie's recommendation for these reasons:

-- He is a very well qualified, experienced cardiologist.

-- He noticed the tricuspid valve regurg and that it was more pronounced than the mitral valve regurg.

-- He diagnosed it as "congenital" instead of "acquired". The typical MVD in cavaliers is acquired. Congenital means that it was there either at birth or very soon thereafter. Acquired means that it was not present at birth and began and progressed afterwards.

-- For whatever reason, he believes that the tricuspid regurg is the bigger issue and is congenital. So, this is not a typical MVD problem.

-- Dr. Oyama said that, while an echo is not necessary for about 85% of MVD cases in small dogs, there may be other reasons for doing periodic echos.

-- If it was my dog, I would follow Dr. Petrie's advice, but I would ask him about the congenital diagnosis and the tricuspid diagnosis and whether they mean my cavalier has something different than garden-variety MVD.

Here is a list of the board certified cardiologists in NY: http://www.cavalierhealth.org/Cardiologists.htm#New_York
 
Congenital means that it was there either at birth or very soon thereafter. Acquired means that it was not present at birth and began and progressed afterwards.


Not "very soon thereafter" - Congenital means "present at or before birth." This includes damage that occurs during the birth process or an abnormality during development of the fetus.

Endocardiosis (MVD, chronic valvular disease, myxomatous degenerative valve disease) BY DEFINITION is an acquired disease and not a congenital disease. It’s caused by a degenerative process thought to be genetic (hereditary). It can definitely be acquired at a pretty young age (defined as "early-onset") but it is not present at birth (although the Cavalier's genetic propensity to develop MVD is, of course, present at birth). A congenital disease is a condition or defect that is present at birth, such as tricuspid valve dysplasia. TVD, PDA, aortic stenosis, and others are cardiac birth defects. MVD is not a birth defect, but (repeating myself, I know) it is an acquired disease with a genetic component. Confusion about this is common.

My guess is that this is early-onset chronic valvular disease (typical in Cavaliers) rather than tricuspid valve dysplasia (often found in retrievers) but I would specifically ask that question. I suspect a miscommunication, because the alternative would be a very, very rare situation.

I would also want to work with my cardiologist directly rather than having the GP vet in the middle. This may be the source of the miscommunication. Also, a cardiologist with his own practice location generally has better ultrasound equipment than one who travels to GP vet offices and either uses their equipment or portable equipment.

By the way, Monica, I had a Cavalier (Darby, born in 1993) who was diagnosed with a murmur at 18 months. He lived to be 15 and died before ever going into heart failure of causes unrelated to heart disease. This is, of course, on the extreme end of the expected progression, but it shows that there is quite a wide range in the disease progression. (Coincidentally, he also had early tricuspid valve insufficiency.) I would be unhappy but not in despair about Ellie's heart situation. Monitoring her progression over the next 6 mos, 12 mos, 18 mos, 24 mos will give you a better idea of whether she has slow, moderate or rapid progression. If you haven't done baseline chest radiographs already, I would do that so that you have a record to compare with follow-up rads. Unless I had money to burn, I wouldn't do echos every six months unless a cardiologist gave me a good explanation of why this would be necessary. It's too vague at this point since you haven't even spoken with the cardiologist. If there is RAPID progression of murmur grade or increased heart size on chest rads or symptoms appear, then there is a reason to be more aggressive with diagnostics and do echos more frequently. I would probably get an auscultation every three months and more x-rays every six months until you feel comfortable that she doesn't have rapid progression. Then you can lengthen the time between check-ups.


Pat
 
Not "very soon thereafter" - Congenital means "present at or before birth." This includes damage that occurs during the birth process or an abnormality during development of the fetus. ...

I was relying upon this cardiology definition: "Congenital if it is diagnosed in utero, at birth or within the neonatal period (0-27 days after birth)".

Here is another set of definitions of human congenital cardiac problems:

Question 1: Is there a definition of major congenital heart
disease (MCHD) and if so, what is the birth prevalence of
isolated MCHD?
LA: There is no universally accepted definition of MCHD.
It has been variously defined as:
1 CHD resulting in presentation to a cardiologist during
infancy;
2 CHD requiring intervention during the first 6 months;
3 CHD requiring intervention during the 1st year of life;
4 an abnormality of connection
 
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Pat and Rod- thank you SO much for clarifying the distinction between congenital and acquired. I was having immense trouble wrapping my mind around it and I think that is why I was having trouble understanding Ellies diagnosis (and perhaps my vet did too?). Based on what I'm reading it seems that Ellie does not have MVD. I did not realize MVD is typically acquired and NOT congenital. I have no idea what this now means in terms of prognosis and I do realize she could still develop MVD. I do know that early onset mvd supposedly progresses faster but I wonder what the typical progression is like with congenital illness and that is what my question is to Dr. Petrie. I have not really come across any readings in terms of congenital disease in cavaliers but if he is asking for an echo in 6 months my assumption is that it probably could also progress fairly rapidly..or not..

Im assuming since this was congenital that the murmur has been there since birth and there was just no prior detection of it. I am also assuming that this is not a hereditary condition, that it is genetic. In other words I don't know if there was any way of detecting this in the parents prior to Ellie's birth unless genetic testing was done. Please correct me if I'm wrong.

I also don't really care per se about the nitty gritty details about the heart condition/definitions (it is really more interesting and good to generally understand than anything else), I care more of how it will progress and ultimately affect her as I continue to weigh the pros and cons of surgery.
 
Hello All,

I know how frustrated I was when I never got to see a follow up on a cavalier and how they were doing. The past couple months have been very busy but I wanted to circle back to give an update that I did meet with Dr. Loughin/Dr. Marino and Dr. West. If anyone is struggling through the same decision, please do not hesitate to ask via PM and I will be happy to respond.
 
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