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Thread: Why it's important to talk to doctor. Reponse from Pat's comments and personal story

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    Default Why it's important to talk to doctor. Reponse from Pat's comments and personal story

    I started a new thread because I read some things that Pat wrote yesterday responding to Gracie wanting to wait until Pat weighed in on medication. We all know that she is extremely knowledgeable, however, we have to be able to talk to specialists ourselves. I know when I wrote about Ella having a stomach bug, I knew something was wrong. This isn't about that, but think about if Pat was on vacation, Rod didn't answer his email?

    I wrote a long post that got deleted yesterday when my phone timed out. I have been hesitant to post but I really want to say my input. I am not saying this to just Debra (Gracie’s Mom) but others to hopefully learn from my past. Pat is probably the smartest person I have come across on message boards. I am going to comment on some important things she said and also say something that I hope she will not take offense to because I believe she would feel the same way or correct me if I am wrong. One thing to always consider whether it is Pat (who luckily never had a Cavalier treated for SM) or another person who has and can give their experience are these things:

    1. Pat has not seen or examined said Cavalier
    2. Pat has not seen MRI
    and most important
    1. Pat is not a neurologist.

    Some of the points Pat said that are very valid and I hope others remember is this which I will bold.

    “No one should make medical decisions based only on what someone says on an internet message board. Here is a good approach, especially when dealing with a clinician with whom you don't have an established relationship. This is what I do to establish credibility and get to a relationship where the clinician and I are part of a treatment "team":

    1. Print out any and all valid veterinary resources to read, highlight, and use for a discussion. In this case, I'd print Clare's treatment algorithm for vets and also pages from Plumb's Veterinary Drug Handbook on all of the various drugs that you want to discuss - prednisone, gabapentin, tramadol, any NSAIDs, omeprazole, etc.

    2. If there are questions that you have from reading message board input/feedback, I'd list them on paper to ask the clinician. But be very careful - when you start a sentence with "I read this on the internet" you almost immediately "turn off" a medical professional and put him/her on the defensive. So you want the clinician to understand that your main sources are valid veterinary references but that you also have feedback from folks with dogs with the same problem. That 360 vet website is an excellent source for material by the way. There is crap on the internet and there is valid information on the internet - you want to immediately establish that you are smart enough to know the difference!

    3. IF you do not follow discharge instructions you MUST inform the clinician what you are doing and why and give feedback on the results. The fastest way to destroy a relationship is to not follow instructions and not inform the clinician until later. If you aren't able to have a phone discussion or in person discussion with the clinician, I've found it useful to send a carefully written fax or email, being careful to cite sources. My cardiologist has commented to me how helpful it is when I do that in between appointments, because he can ponder the situation and then phone me for a discussion. He says that this is a very efficient use of time.

    4. If you establish a relationship of respect and partnership, with full disclosure of what you are doing and why, there should not be a problem if you choose to not exactly follow the clinician's recommendations. This (deciding a treatment course other than what was recommended) very rarely happens with me and any of my vet team, but if it does, the clinician knows that I have made an informed decision and that I accept responsibility for the consequences. I am a member of the treatment team, but I'm also the coordinator and I am the final decision-maker.”



    Point 1.

    When I talked to Debra and she mentioned Gabapentin 2 times a day, I thought back to all of the posts on CT saying it wears off at 8 hours and I thought it should be 3 times a day. Well don’t listen to me but there was a reason 2 times a day first

    “Originally Posted by Kate H
    We had a discussion about this a couple of weeks ago. 8 hours is the average time that dogs take to metabolise gabapentin - which means that some will need it more often and some less often. Clare Rusbridge advises starting on twice a day (ie 12 hours) and then adjusting it to suit the metabolism rate of the particular individual dog. Meds for SM are a matter of trial and error for a few weeks or months as you and your vet work out which drugs and which dosage control pain in your particular dog. I think all vets start low and then up dosage as required - if you start too high too quickly you run out of options sooner, and may find yourself backed into a corner with no more pain-control options. Whether a dog needs additional gabapentin can often depend on air pressure - many of us find our dogs need help when the weather is particularly stormy or hot. But as Pat says, you need to keep feeding information to your vet/neurologist and liaising with them, so that they have all the data they need to make informed decisions about adjusting medication.

    Kate, Oliver and Aled

    Pat did raise some points and some questions and others about waiting to take prednisone, why did they not start on a CSF inhibitor but THESE are questions to go back to the neurologist.

    Now my story:

    I posted Ella’s MRI on a SM Yahoo group sometime ago with the changes from her first on to the second to get opinions. DO NOT RECOMMEND. I was contacted by Rod Russell who a breeder emailed him privately because she has cavalier with worse MRI and not on nearly as much medication. Now unless this was Dr. Rusbridge (which I doubt she would take time to contact Rod about Ella and even though I don’t know her personally, I doubt would say another neurologist was incorrect in treatment without me asking her opinion), I don’t think this person would know more than Ella’s neurologist who saw her almost every other week or me who saw her symptoms EVERYDAY.

    I started to doubt the one person who had given Ella such great treatment and I’m thankful now everyday (her neurologist). I questioned myself, am I over reacting? These things did no good except make me want to take her off prednisone which I found out was a big mistake and she desperately needed it.

    What one should do is go to their neurologist about concerns. For example, I am concerned about long term side effects of prednisone? do you think it is a must? I asked him this which he said For Ella, wouldn’t she rather have a life with less pain and managed or worried about what could happen in the future which would be monitored and she wasn’t on a high dose. Now remember I saw a HUGE difference with prednisone so that was why FOR HER, it was something I gave her.

    So thank you for your concern but I know what treatment helped Ella. So for those of you please remember this story. What works for one may not for another. One MRI may look worse than another, but the symptoms are different. EACH DOG is different and there is nothing wrong with studying up on information but remember that your best ally is your dogs neurologist or specialist. They will be able to tell you and help you most. Now if you have one close minded and a "know it all", I don't like those but it is key to have a good relationship with the person who will be taking care of your loved one.

    You get on message groups and some things are very helpful like finding out about Lyrica and other tips, but these all need to be discussed with your neurologist. One that you can trust and go to. They are the ones that KNOW your Cavalier and don’t you think they know more than some unknown poster that has not gone to vet school more less studied neurology?
    Anne Proud mother of Elton 5 and Angel Ella

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    Anne, I know you’re writing about treatments for SM/CM, but a lot of this is general information that can be used by anyone in need of direction. Not everyone is comfortable questioning someone who has advanced knowledge (i.e. doctors) on the medical concern at hand, so the outline Pat has put together on where to start is extremely helpful. It gives a baseline of what questions to ask and references where to find medical info. I know it helped me.

    My experience is with Sydney and severe heart disease. Besides MVD he has an arrhythmia and pulmonary hypertension, congestive heart failure, and a few more things that all have to be controlled and managed at the same time. His medication has to monitored carefully.

    Point 1.

    When I talked to Debra and she mentioned Gabapentin 2 times a day, I thought back to all of the posts on CT saying it wears off at 8 hours and I thought it should be 3 times a day. Well don’t listen to me but there was a reason 2 times a day first
    That last part about being a reason....well, here’s my story. When Sydney first started on heart medications, furosemide was one of them and it was prescribed once a day. When I wrote about it here many told me it should be given 2x a day. Even the 19 year old receptionist at the regular vets office told me our cardiologist was wrong! Who did I trust, the cardiologist. She’s the one with a medical degree, she’s the one who examined Sydney, she’s the one who saw his xrays and ultrasounds. I did ask my questions and she explained that she takes each case separately and for Sydney, at this time, once a day was best. She reevaluates his meds every time she sees him, and has now tweaked his meds several times. Just like the drugs used for SM/CM, there may be guidlines on what meds are used, but no two dogs and no two dosages are alike and sometimes it is trial and error to find the correct combo for your dog.

    For me, reading the experiences of others here and having those on the board with more experience with cavaliers with heart disease helped me decipher the information from the specialist and this was a HUGE help to me. It actually made it easier to understand when the cardiologist explained his condition and started talking about drugs like Vetmedin, furosemide, and all the other heart medications. When I saw certain behaviors in Sydney like coughing, panting, wobbly walking, etc. I knew these were SERIOUS concerns and to contact the doctor immediately. So while I rely on the cardiologist for treatment and I am part of their team for decisions, I do rely on this message board for support and sometimes insight that I may not have on what is happening.

    I think many of us here, including myself, owe Pat a big thanks for all the research she has done and shared with us. I also want to thank Karlin and Niki who have also shared their experiences and research with us. There are also many others, and I apologize for not being able to name the all, but I want them to know that they are appreciated too.

    Now, since I'm getting sappy here, I also want to thank those who sometimes have no information to share, but just want to let us know that they are keeping us in their thoughts and are cheering on our pets. Those posts are also a tremendous help.
    Joyce - Proudly owned & loved by

    BellaMia (Aug. 30, 2012) My Beautiful Ruby Milo (Jan. 20, 2014) My Handsome Tri
    Sydney (
    April 16, 2000~April 4, 2012) Always and Forever In My Heart

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    Anne Proud mother of Elton 5 and Angel Ella

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    Oh I think you misunderstood! I owe pat and others great thanks!!! I just mean to use the information and talk to the cardiologist/neurologist etc. To trust blindly on one is not enough! I think pat knows so much especially hearts, but to follow advice and go back and ask questions. I like her guidelines and think she should write a book! I hope I didn't say it so that it does not sound like I don't think that!

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    Anne Proud mother of Elton 5 and Angel Ella

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    Great now I'm worried! I didn't mean to sound like that, I'm so thankful

    Sent from my Droid using Tapatalk
    Anne Proud mother of Elton 5 and Angel Ella

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    Great now I'm worried! I didn't mean to sound like that, I'm so thankful
    Don't be worried Anne, I was agreeing with you, I just wanted to make sure others who maybe don't post often and don't know Pat, Karlin, Niki, you, me, know that these are guidelines that are helpful for everyone, no matter what horrible condition their cavalier has.

    I believe what both of us were trying to say is that the first line of defense has to be with your cardio, neuro or other medical professional. Now I'm worried I wasn't clear.
    Joyce - Proudly owned & loved by

    BellaMia (Aug. 30, 2012) My Beautiful Ruby Milo (Jan. 20, 2014) My Handsome Tri
    Sydney (
    April 16, 2000~April 4, 2012) Always and Forever In My Heart

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    Default I agreed with Pat too...

    I was just looking for her to weigh in before I called the neuro back today. I wanted all the information that I could get and I think that I just mistated what I was trying to do in the goal of waiting for Pat's input. I also collected information from various people, including Dr. Rusbridge and Sandy Smith's materials.

    I think all of this is VERY important information to share and keep in mind. I was not very satisfied with my neurologist generally so moving on, but finding one you can build a relationship with is important. None of us here should consider advice from others on the board until we talk to our vets. I have left a message but no word back yet on changing her meds.

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    All of you are 100% right. Building a relationship with your dog's doctor is the most important thing you can do because that's the person you're going to turn to when you have an emergency. I certainly appreciate that I can come on here and you all will listen to me, share my tales of woe, share your stories to maybe give me a different perspective, and give me lots and lots of support, but ultimately it is my dog's doctor that I will give the final word to in terms of medication, surgery, treatment advice - IF I have built up a trusting relationship with him/her. If I just listened to everything that was said about prednisone on this board I would have been scared away from ever trying it on Riley. It can be a scary drug. But even with her surgery, she still couldn't walk straight or without leaning on walls or the kitchen cabinets without it. So for her, I just have to turn a deaf ear to all the prednisone naysayers, listen to her neurologist, and know that for some dogs like Riley it is a miracle drug and she will always need it.

    That being said, I have learned so much from being a part of the CavalierTalk community. There are some incredibly knowledgeable people on this board and I value their expertise - and yes, I sometimes lie in wait for their reply. Joyce made a good point about other people having different insights into a condition. Sometimes it may be just a different question that you forgot to ask your vet/specialist at the time when you received a diagnosis because you can only retain so much info at one time. What's important though is not to think that all SM or MVD dogs are the same. Just because Sydney and Scooby seem to have 9 lives doesn't mean that every dog with MVD will.

    Debra, I hope you find a good neurologist. Since Riley is on prednisone we go every 4 months for bloodwork so it's really key that we have a good relationship. Dr. Podell really knows Riley. He always makes her walk up and down the room, but then she always comes over and tries to climb up his legs because she knows that he always gives her a treat after that. He actually rescued a 3 year old ruby this past year so we always talk about our cavies. He now takes his ruby to my groomer too!
    Bev
    Oliver (blenheim, born 3/2001), Riley (black & tan, born 8/2002,), Madison (ruby, born 9/2003), and Oz (tri-color, born 7/2007)

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    Quote Originally Posted by Love my Cavaliers View Post
    All of you are 100% right. Building a relationship with your dog's doctor is the most important thing you can do because that's the person you're going to turn to when you have an emergency. I certainly appreciate that I can come on here and you all will listen to me, share my tales of woe, share your stories to maybe give me a different perspective, and give me lots and lots of support, but ultimately it is my dog's doctor that I will give the final word to in terms of medication, surgery, treatment advice - IF I have built up a trusting relationship with him/her. If I just listened to everything that was said about prednisone on this board I would have been scared away from ever trying it on Riley. It can be a scary drug. But even with her surgery, she still couldn't walk straight or without leaning on walls or the kitchen cabinets without it. So for her, I just have to turn a deaf ear to all the prednisone naysayers, listen to her neurologist, and know that for some dogs like Riley it is a miracle drug and she will always need it!
    I hear you about Prednisone since it was a miricle drug for Ella also, but Ella and Riley seemed to have similar symptoms and Ella was having trouble with movement. If Ella was ok without, then she would not have been on it, but for some like Riley and others if it helps then that's what matters. IMO, if they do fine with gabapentin alone, then no need. I hear people (not Gracie) that are not on this board but their cavaliers are still having trouble on current medication but will not add prednisone even when neurologist recommends it, because of the "scary side effects" or long term usage. In my opinion, I felt what kind of life would she have in pain without it?

    One time I read some drug I was prescribed and the potential side effects etc., it scared me to death! Prednisone is an intense drug but for cavaliers like riley and Ella, I know it made Ella's life more enjoyable. I think finding a breeder and a vet are both important. A vet and/or specialist are essential in your dog's health.
    Anne Proud mother of Elton 5 and Angel Ella

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    I hope you don't mind me weighing in, as I'm not coming with experience on Cavalier health issues (though who knows what the future will being for my Claire) but rather just from someone who has experienced issues with canine disease.I apologize for the running paragraphs, as my IPad causes issues for me at this board, and doesn't show paragraphs or even correct sentence structure. I think many times when we've been faced with difficult news at a Vet or Doctors office, our emotions take over, and everything we think we know or have retained about a particular disorder goes out the window, so to say. We come home many times overwhelmed, and realizing we didn't ask 1/2 the questions we wanted to ask, nor retained 1/2 the information the Vet, Doctor or Specialist told us. I know this isn't true of everyone......but it happens a lot. It's times like these that we seek advise and hand holding from those we know best, or know our situation best (ie, dog breed). It is up to us to weigh out all the advise, or sharing that is given. And it's also up to us to seek out a Vet/Doctor/Specialist that we are comfortable with, that will take the time to know us best. Know one can do that for us.I've had experiences with others in internet forums giving advise indirectly (referring to the person that contacted Anne through Rod). I personally don't entertain unsolicited advise. What I mean by that is that if the person didn't get ahold of me personally, I dismiss their thoughts. I think there is great wealth in forums like this one where knowledge can be shared, and I would have never been as comfortable with my diabetic dog, and been as good as a caretaker if not for a forum where folks gave me both practical and emotional support. And ultimately equipped me to go on and serve as an Admin/Moderator giving back to others.It is up to each of us to weed out the advise given. To do our own research, and to be equipped and a true advocate for our dogs. I am thankful for people all across the world who have stayed up with me half the night when I was scared after a hypoglycemic attack with my dog, and others who held my hand when he was dx'd with cancer and had to be PTS. None of us should depend on one person for our advise. But, yet, there will always be those who we hope will weigh in on our situation, whom we feel a kindred spirit with. And that is okay. Thank you all for the great knowledge you have. For sharing, and mostly caring so deeply. I can only reach across many miles of Internet connection, and offer a word of comfort or encouragement, or even a prayer. But I am grateful for each of you.
    Cindy and Claire
    Claire was born on Feb7, 2010

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