Page 5 of 11 FirstFirst ... 34567 ... LastLast
Results 41 to 50 of 105

Thread: My puppy was just diagnosed with SM

  1. #41
    Join Date
    Jul 2010
    Location
    nyc
    Posts
    636
    Post Thanks / Like

    Default

    Quote Originally Posted by Hopeful4now View Post
    Thank you all for your replies...just a short update:

    Dr. Rusbridge emailed me back and I sent her my MRI. For anyone wondering, a phone consult is 190 pounds. Yeah, I see myself filing bankruptcy now... She'll review the MRI later this week and we are setting up the consult for next week. I also spoke with a trusted neurosurgeon in the US (did two surgeries on a friend of mine's dogs years ago and the dogs are both alive and well) and he said right now that although her symptoms seem "bad," she only has one small syrinx and can most likely be controlled with meds for now. He does not recommend surgery at this time because there are no guarantees and he isn't confident she'd fare any better at this time than with meds, but to MRI her in three months to see if the syrinx has gotten bigger or if any new ones have formed and to reevaluate then.

    For anyone who asked about insurance, I don't have it and here's why. The only US carrier that covers Americans living abroad is VPI as far as I know and they do NOT cover any type of hereditary condition like SM or the care for it. Trupanion, 24 Petwatch, etc. are not available to me in France. French carriers do not cover SM and the problem now is that when I move back to the US and get insurance then (if i decide to), this SM is a preexisting condition so even if Trupanion did cover some of the care, they wouldn't in the future since it's preexisting.

    Thanks again for all your well wishes. I feel a little calmer today knowing that I'll be speaking to Clare soon and am doing everything humanly possible for this little girl. I'll update this thread when I have some news.
    Is this neurosurgeon dr.west by any chance? Sounds exactly like something he would recommend. U can PM me.


    Sent from my iPhone using Tapatalk
    Mom of Blondie aka The Monster, my furry daughter and loyal friend!!!!!!!!

  2. #42
    Join Date
    Mar 2005
    Location
    Dublin, Ireland
    Posts
    24,063
    Post Thanks / Like
    Blog Entries
    15

    Default

    Actually to give some context -- I would consider the few days most dogs need to be relatively back on their feet post-surgery to be a fractional level of discomfort compared to a single screaming session of a dog suffering the pain of this condition. The titanium mesh surgery is more involved (and I am in no way convinced it is better or has appreciably better results) and requires longer crate rest but I would guess in 95% of cases the dogs are surprisingly 'normal'' within 24 hours -- wagging tails, walking around, eating normally. Most immediately improve and pain disappears becaUse pressure had been fully relieved. The surgery is not that complicated although it requires skill and has had an extremely low rate of problems during or immediately following surgery as well (the issue is success longer term). The biggest problem really is trying to keep the dog relaxed and with a low level rather than normal level of activity. Clare supports allowing normal activity within 2 weeks or so of surgery (not lots of activity but just letting the dog behave as normally around the house, no long term crate rest as in needed with the titanium surgery).

    Given the very young age of your pup and onset of symptoms, I don't really know if surgery will remain a viable option for very long going on past experience of recommendations by neurologists and neurosurgeons (Dr Marino at LIVS in the US for example would generally recommend moving immediately as each day/week can lower success chances, but each case is individual and also different people feel different ways -- part of what makes this all so hard). Unless the pain is very much under control with meds, I also certainly would never fly a dog a long distance with this condition and if I were going to do it, would be doing it in weeks. But you will then have to make a commitment of many months -- I'd think at least half a year top a year -- back in the US for recovery.Cabin pressure will generally not aggravate SM but the stress of travel, turbulence etc, may. I've done that journey with a dog and it is very long and stressful. Some have done US internal flights and found them difficult; others have been OK so it is hard to predict.

    If your pup is continuing to yelp etc that you do need to get back in contact with Laurent about adjusting meds, maybe adding in prednisone for example. That can all be done by phone generally without cost as a follow up consultation. The one thing you CAN do right now is adjust meds so that she is not experiencing pain. If she keeps on having pain despite adjustments then of course that has to influence the speed at which some decision is made as well. There are lots and lots of options available to manage pain in the short term while you decide what to do longer term. Waiting three months and re-MRIng sounds a reasonable approach if the meds can deal with her pain. But another MRI will of course be expensive.

    A phone consult is generally little different than someone showing up in the office, excluding a physical exam, so the costs are going to be similar. It takes the same amount of time for the neurologist to analyse the MRI and talk to the client. That's about normal for a consult with a specialist (and I know Dr Rusbridge is swamped with requests to look at MRIs so this does affect her work schedule and has to be charged for from the practice's point of view). And there will be a need to have regular consultations either with vets or neurologists I'm afraid -- it is the nature of the disease for all of us. There are costs, costs and costs no matter what route is taken -- both financial and mental.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  3. #43
    Join Date
    Jun 2008
    Location
    Chicago area
    Posts
    1,777
    Post Thanks / Like

    Default

    Regarding surgery, Riley handled the recovery just fine. She was older than Dagney - I don't know if that made it easier or harder. She lives in a multi-dog house so that was definitely tough to keep her calm with three other cavaliers around, with one particularly rambunctious male under the age of a year. She had the titanium mesh implant and has had no complications from it in the 3.5 years since her surgery. As I posted before, she is still on medication (prednisone) and most dogs still are, even after surgery. What surgery did for her was to improve her quality of life immeasurably. She could barely walk unassisted before, her vestibular system was so badly damaged by her SM and her rear legs were so weakened. Her syrinx covered almost her entire spinal cord and her neurologist diagnosed her SM as advanced and severe and complicated by a cerebellar cyst. After surgery and with daily prednisone (which did not help her pre-operatively) she can walk, but still can't jump. I have stairs for her to get onto chairs, the sofa and our bed. Even the one step into the house is sometimes hard for her. But she runs in the yard, goes for walks, chases (and kills) chipmunks, and is loving life and I treasure every day with her. She still has times when she hides under a table or chair to get away from the ruckus the other dogs create. I assume she must be having some pain at those times. But she never cries out, just hides.

    So, I guess this was all to say that surgery is not such a great evil and the recovery is hard, but probably psychologcially harder on you, the owner, than the dog. I know I'm the only one who's posted about surgery, but for Riley it was the right decision. Good luck with your consultation with Clare. I hope you get some clarity.
    Bev
    Oliver (blenheim, born 3/2001), Riley (black & tan, born 8/2002,), Madison (ruby, born 9/2003), and Oz (tri-color, born 7/2007)

  4. #44
    Join Date
    Jun 2009
    Location
    South Essex
    Posts
    911
    Post Thanks / Like
    Blog Entries
    2

    Default

    Hi there again,

    Give Dagny a gentle hug from me!!

    I dont have expertese in this area, regarding surgery as I havent chosen that for either of my dogs!

    I agree with you through about not wanting to put them through it- I couldnt live with my self if it went wrong and I lost them when I could've had a couple of years with them on medication. Nothing to do with costs!

    Ruby has been on the same medication for over 2.5 years now with no need for changing- and that is Lyrica, some days if she seems uncomfortable I add in Metacam and occasionally have given her an extra Lyrica!

    She is over 5 now and diagnosed at 2.5 with moderate SM- her syrinx classed as very wide and short and not central.

    I know that being so young the odds are against Dagny but she may surprise you all- from the Neurologist saying her syrinx is still fairly small Id be hopefull that it wouldnt get any bigger with the help of a diuretic and that the pain could be managed as well.

    I hope you get some help from Clare- she has been great for me and my dogs!

    Good Luck and Im praying for you both!! Try to get some rest as you need to be strong for your little girl- she needs you!

    Karen

    Ruby - my stunning soul mate who defies the odds every day
    Charlie- my angel at heart and devil at play


  5. #45
    Join Date
    Jun 2010
    Location
    NY, NY
    Posts
    267
    Post Thanks / Like

    Default

    Hello, I was just reading your posts and wanted to say I am very sorry to hear about Dagny. My boy showed signs at under one year and is currently being managed on medication (he is now 3). Take it one day at a time.
    You are in great hands with Clare, as you cannot ask for a better expert on this horrible disease.
    You and Dagny are in my thoughts and prayers. Hang in there
    Irene-
    Jack and Penny's Mom, NYC

  6. #46
    Join Date
    Feb 2012
    Posts
    51
    Post Thanks / Like

    Default

    Hi all, just a quick update from the original poster:

    I had my phone consult with Clare Rusbridge this afternoon. For anyone out there wondering the cost, it was 255 pounds and surgery (I was curious and asked) is around 4,000 pounds in her office. She was very nice and thorough and spoke to me a bit about the condition and what could happen in the future and then we went over treatment and where to go from here. Bottom line is that because my pup is so young, she does NOT recommend surgery at this time and believes the Chiari malformation is what's causing the pain and most likely not the early stages of SM (although she has that as well in its beginning stages). She told me that we are going to get her comfortable on meds and she'll liaise with my French doctor who she knows well so that we're all on the same page. The youngest pup she's done surgery on was 9 months old in case anyone was wondering. The reason for not recommending surgery is because Dagny is still growing and if she were to do the decompression surgery now, it's very likely that my dog's body is still forming and the problem may reoccur. Our goal now is to get her comfortable and living a normal life and then re-MRI her in six months' time and go from there. If her condition has progressed, then we can reevaluate then. She said she's seen pups like mine have MRIs like this and then stabilize and not necessary go from painful to horribly worse, so she did give me hope, but we still have to be realistic.

    She also cautioned me about doctors rushing into surgery when there's no science to say that it will help my dog. She gave me a very honest opinion and wasn't a Doomsday kind of person or someone who was looking through rose colored glasses. We discussed everything matter of factly, got our priorities in order and have a plan. So I know I just need to enjoy my dog, keep giving her the meds, and hope for the best. Let's hope her condition does NOT develop quickly and that this will all work out in the end.

    I feel that Dr. Rusbridge's consult was really expensive, but for me, it was worth the peace of mind knowing she agreed with what my conservative surgeon in the US said. So if everyone is in agreement, I'm happy because I know I've done everything humanly possible for my dog. And I can rest easy knowing that. If this were my child, I would have gotten at least one other opinion, so it was money well spent.

    As for the breeder? No response to my letter and bill, but I'm not expecting anything from her. Probably in denial.

    I want to say thank you to everyone who has reached out to me and offered their kind words, opened up their homes to me and supported me. I probably won't have many updates for this thread (unless something horrible happens), but I will continue to check my PMs in case anyone wants to reach out. I just think emotionally, I may want to distance myself from the trauma of the past week for now. But I'll be back to support you all anyway I can because this is a great community. ;-)


    And also, Blondie, I tried to PM you but your inbox is full!
    Last edited by Hopeful4now; 16th February 2012 at 03:36 PM.

  7. #47
    Join Date
    Mar 2005
    Location
    Dublin, Ireland
    Posts
    24,063
    Post Thanks / Like
    Blog Entries
    15

    Default

    Thanks for that -- very informative and will be very useful to others in future situations. She is quite conservative on surgery as well and really you need that kind of feedback from someone who really knows CM as well as SM and is as experienced in looking at syrinxes and the malformation. Interesting that she doesn't recommend surgery on younger pups as some others especially in the US pressure for surgery. It makes a significant difference to recommendations I am sure that the syrinx is very small -- I missed that on your previous posts.

    Most neurologists are not very good on CM -- while for most dogs CM alone doesn't seem to cause issues (horrible if it did as over 90% of cavaliers have it ) for some it seems to cause really significant and painful symptoms. Part of the mystery of this condition -- probably connected to some dogs having quite different patterns of CSF flow. CM alone in cavaliers is its own area for future study and research.

    She knows Laurent very well so that will be well worth your consult to have them talking to each other. Best of luck in the future and let us know how Dagny gets along.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  8. #48
    Join Date
    Feb 2012
    Posts
    51
    Post Thanks / Like

    Default

    Thanks Karlin, both the conservative surgeon in the US who I know and Dr. Rusbridge believe her screaming episode was caused by the CM and not SM at this point as well as her symptoms since the syrinx is small. But the next six months will determine what happens in terms of treatment--whether the SM progresses or stays as it is. She said the surgery is actually more effective when dogs are painful from CM and that dogs with SM that are too far gone usually don't have the best results. But for right now, her SM is in the beginning stages and she's not done growing. Yes, she knows our French doctor well so they're working together in this. So so relieved for now to know there's nothing more I can do. I think that was part of what was making me so upset, not knowing what to do. But I've done everything I can for her.

    Also, the stress came from this all happening so fast. The episode, the diagnosis, the consults, not knowing what to do, etc. I'm going to regroup for the next six months, enjoy the hell out of my dog and if and when the time comes in six months after she's re-MRI'd, I'll make a decision with clarity as to how to proceed.

    Oh, and I spoke to the breeder on the phone. She was really reasonable and felt horrible. No excuses, just genuine concern and our talk went really well. She's refunding half of what I paid for the dog. Better than nothing!

    Will absolutely keep you all posted. Dagny is doing great today!

  9. #49
    Join Date
    Jul 2010
    Location
    nyc
    Posts
    636
    Post Thanks / Like

    Default

    I cleaned up my inbox!!


    Sent from my iPhone using Tapatalk
    Mom of Blondie aka The Monster, my furry daughter and loyal friend!!!!!!!!

  10. #50
    Join Date
    Apr 2010
    Location
    co durham england
    Posts
    785
    Post Thanks / Like
    Blog Entries
    1

    Default

    hi
    i'm so sorry to read about dagny and i wish you all the luck in the world
    with him
    please give him a kiss and cuddle from louie and his mum

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •