Syringomyelia/Chiari Malformation

[casbes]

Hello Everyone! Just thought I would check in and update everyone on Jacob's recovery. However, after catching up on the thread, I feel I must put in my two cents on Bush Veterinary Neurology Service.

We saw Dr. Jarboe at BVNS for a second opinion on Jake a few days after he was diagnosed with CLM/SM and honestly, she saved Jake's life. She was kind, patient, listened attentively, presented us with options, increased Jacob's pain medication to appropriate levels and was just extremely knowledgeable. She sent a followup email detailing the medication changes and gave us a thorough report on Jake's condition. I had a terrible cold the day we went to see her or I would have given her a huge hug--she was absolutely wonderful. Most importantly and contrary to the impression she has made her, she didn't seem interested in pushing me to get surgery for Jake at all AND she even reduced my bill by $350 out of the kindness of her heart.

The staff at BVNS was welcoming, enthusiastic, warm and kind as well. I have to think that a miscommunication has occurred or that there has been a simple clash of personalities with no one at actual fault.

I went to another neurologist in Vienna and she was highly incompetent. I think working through whatever problem there is at BVNS is likely to be the best bet for Stephanie (I'm sorry; I'm so tired--was it even Stephanie who had the problem? Forgive me if it was someone else!).

After we get through the recovery period with Jake, I plan to take him back to Dr. Jarboe. Please reconsider warning people away from her practice as I think she offers a lot of hope for our cavaliers. I don't think there is a better option in Northern Virginia. I think she rocks.

[Oliver & Henry's Mum]

Kelly, to quickly answer your question about Georgia, that is not a symptom with which I have heard about extensively, or encountered. Sweet Georgia has her struggles darling, and my heart goes out to you.

Phyrie, I couldn't agree with you more, obviously!

Cas, thanks for your update on Jake! I'm glad you are pleased with the Bush Veterinary Hospital and their treatment of you. Obviously, you are in a different position than Stephanie as you opted for the surgery. I am glad to hear that your experiences with them have been positive, as one would hope when dealing with such a debilitating disease that those who deal with the humans, should be nothing but compassionate.

As far as the information on the Cavalierhealth.org is concerned, I have spoken directly to their editor and they obtain their information directly from a registry. If a particular Vet does not update their own information, it becomes a hunt to find their new location. The gentleman who is the Editor of that site has put a great deal of time and effort into providing the most up to date information available, and of course, there will be glitches. This is not a paying job, I'm sure and he is doing a great service to not only the Cavalier community, but to anyone whose dog suffers from SM/CM.

While I do not know the name of the Vet that was so rude to Stephanie, I can only hope it wasn't the same Vet you have used and this was a one off. As Phyrie said, I also truly hope that they recognize the error of their ways and treat her with the same dignity as they do another who has opted for surgery.

There is no room for a clash or personalities in this type of environment, and personally I would put the blame solely on the facility and not the distressed owner.

As far as "warning people", I am simply telling it like it is! Can you imagine receiving such a rude email, not even a telephone call, but an email saying that she is no longer allowed to call them?! Think about that! It's incredibly unacceptable considering the condition with which we are dealing. It only makes sense that an owner might be agitated, upset even. The staff should be trained in compassion, regardless of the circumstance. I know Stephanie would never be so rude to warrant such horrible treatment, but again, she's not a money maker for the Clinic.

I am very pleased to hear that Jake is doing so well after his surgery and I hope with all my heart that he continues to thrive. I am also pleased that you offer another side to the coin, so to speak and perhaps this might even be a starting point for the Doctor who runs Bush Veterniary Neurology Clinic to reconsider her position, and her approach with those who opt out of surgery.

Dr. Marino at LIVS, the pioneer facility in this type of surgery and treatment was well known for his "bedside" manner with the humans involved, in that it was lacking. However, I've heard that is changing, but he is all about the surgery as he is honing his skills by operating on our beloved companions, as is Dr. Jarboe at BVNS.

For those of us dealing with this horrific affliction, we all know that sinking, sick feeling in the pit of our stomachs when we learn that our beloved dogs have some terrible genetic malformation that causes them tremendous pain and suffering. It hurts us as much as it hurts them, and our only desire is to take away the pain. Any Veterinarian who wishes to practice this kind of medicine must remember that there is a human attached to the "specimen" on their operating table, and behave accordingly. It is not inexpensive to investigate and treat this illness. I'm sure many people are left with the only option of euthanasia.

We are paying their salaries as well as providing them with the "subjects" on which to hone their craft and should be treated as such.

I have encountered only one Doctor at the OVC who made me feel like I was "imposing". I refused to see him after that, although he was Head of Neurology at the time. SM/CM was not his main focus, and unfortunately he passed away at an early age from a Stroke, which was his main focus, ironically. I still would not say an unkind thing about him though as he certainly never treated me with the same disdain that Stephanie has met with the BUSH clinic. She deserves a written apology, and they deserve to be exposed. If one opts out of surgery, don't expect to be treated well from them.

I would love to see proof that Stephanie was SO difficult, she deserved such treatment. It's just not there and for those who wish to treat their dogs first with medication, perhaps this is not the place for them.

Cas, please remember that I am very pleased that Jake is doing so well, and that his life was saved by this Doctor. Colby deserves the same level of care as Jake has received, and I'm sure you would agree with that.

[Phyrie]

What is it about specialists? I can speak about human doctors (I mean doctors who treat humans, not, well you know what I mean!) with some experience, and I know that most specialties come with some rank assholes. I've heard that orthopaedists are the worst, right from nurses who work with them. I've had three in my life, and one of them was the nicest, kindest, most considerate surgeon I've ever met (and I've met my share)! But the other two?! Yegads, they were inhuman!! And don't even get me started about the misogynist gynecologist! Thank gawd he retired! How about the guy who sent Paul home, after putting his arm back together following a chainsaw accident, without any pain meds, saying, "He's a tough guy. He can suck it up." What are they thinking?!

I "get" that specialists spend many years studying their chosen fields. I understand that they may not even see that many patients while studying, perhaps seeing more body parts, separated from their bodies, than a general purpose doctor. But, and I mean BUT!!! There is a reason they study these things. And I think, somehow, sometimes, after years of mind-numbing study, they lose their way. And that way is to heal, and to nurture the health, of their chosen species. And when a doctor loses his humanity, no matter his chosen species to treat, he becomes much less of a doctor, and more of a sadist with a licence to practice medicine.

[casbes]

Just to clarify--Jacob DID have surgery but NOT at BVNS. He had surgery at LIVS. Dr. Jarboe at BVNS was treating Jacob with an excellent combination of medications and was actually pretty neutral about surgery. She really just had Jacob's best interests at heart, that was clear.

Here in Northern Virginia there are not a ton of great veterinary neurologists. If treatment of our pets is our number one priority then I think it's important to present both sides. Bush Veterinary Neurology Service is very highly regarded among the vets I've spoken to. They have a wonderful, very impressive facility and can scan right there in the office. My sister has been working in veterinary offices in Northern Virginia for years and this has been the go-to neurology practice for all of the vets she has worked for.

I would hate to think of a CM/SM newbie coming here for comfort and advice and deciding not to go to BVNS based on this thread. As I said before, another prominent veterinary neurologist in the area severely under medicated Jacob and we almost had him put down as we couldn't bear to see him in pain. Upon examining Jacob, Dr. Jarboe immediately recommended a more appropriate treatment course and the staff even gave Jake his meds there in the office to ensure that he would be comfortable on the way home.

I'm terribly sorry that Stephanie had a bad experience. I think we've all been there and it stinks. But if I had a cavalier with CM/SM and lived in Northern Virginia, I would take him or her to Bush Veterinary Neurology Service. And if I meet a cavalier owner who needs a recommendation, BVNS would be my first suggestion. Dr. Jarboe is a true gem!

[CathyC]

Hi Casbes,

Just wondering how Jacob is doing since his surgery. I know those first couple of months after the surgery were a bit trying for Molly and me. I was just so nervous that Molly was going to accidentally hurt herself..... Hope it's going well for you and Jacob.

[Oliver & Henry's Mum]

Cas, your point is well taken, and I agree that each individual should find that facility that fits them the best. I'm glad that things worked out for you so well at BVNS.

We've had many people who have come through this thread and had nothing kind to say about LIVS either. All those posts still stand.

This thread is a "discussion" borne of each individual's experience. Long before I was a Moderator, I never sought to have anyone's post edited, changed or deleted. Your opinion is highly valued, as is everyone elses.

As you all know, this started as a "lay person's" thoughts seeking the thoughts and experiences of others. I hope anyone reading this thread, reads it in its entirety as it covers so much of the SM/CM experience from an Owner's (Human's) point of view. Your posts are welcome and offer another side to the coin, as I mentioned earlier. I'm so glad that BVNS has worked for you. I remember the days of Jake's pain and your utter frustration.

Cathy, Cas posted an update on Jack a few posts ago. Thankfully, he seems to be doing very well, which I hope continues forever.

Phyrie, I also agree with you. Certainly our experience in Canada might be different from our friends south of the Border, but as you said, not every Doctor remembers why and with whom they are doing what they are doing.

I don't wish to start an argument on here about how one clinic is better than another. However, I felt it was necessary, and still do, to point out that not everyone is treated the same, even if they attend the same Clinic. Information is power, and one can make up their own mind.

Thanks to Cas, one can see the other side of the coin, as I keep saying.

[jacknyc]

Deb I completely agree. This forum should allow everyone to share their experiences, both good and bad. True many will go to the same clinic/hospital and have an entirely different experience. Whether it is from the "mood" of support staff, or the bedside manner of the doctors/vets themselves. I know at the hospital where I work, we get patients writing letters praising us and then there are letters of detest.

By sharing our stories, it helps us feel less alone. If we had a poor experience it validates our feelings that maybe it wasn't personal. If it is a good experience, it helps us feel more confident in our choice. At least this is my take on it.

I appreciate everyone's sharing. For me, my experience at LIVS was fair to poor (back in May 2010) but hearing about the more recent positive experiences of others gives me hope that that should Jack go the surgery route and I take him back there, then it may very well be a good experience. Perhaps, I caught them on a bad week or maybe they did lose interest when I didn't opt for surgery. Who knows...
As you said information is power and I love hearing everyone's stories and personal experiences as they empower me with knowledge to make better decisions for my furry boy

[Phyrie]

It is valuable to remember that, if we begin to censor ourselves, all of the information given here immediately becomes suspect. Information, freely given, without censorship, has value. But if we pick and choose what information to disclose, and give preference to one person's account over another's, invalidates that information. Of course, all of the stories here are anecdotal, and are not, and should not, be considered evidence or proof of absolutes while we deal with these terrible diseases. Each one of you has a unique story, good or bad, and each story has it's own intrinsic value. What the reader takes from your stories is up to each reader, and he will assimilate each story and use it in his own individual way, according to his needs. But he must have access to ALL of the stories, in order to have the benefit of our full experience.

And THAT is the value of these forums.

[Georgia's Mommy]

Hi All!

Georgia had her second acupuncture. I'm attaching a picture so you can see how calm she is during the procedure. I'm really amazed that she isn't freaking out. I also asked the holistic vet about the vomiting. Georgia actually did it there. The vet thinks it might be some gas/heartburn possibly from the meds. The priolosec isn't helping with that I guess. I haven't seen any overall improvement at this point but acupuncture is cumulative. I'll give it 4 more weeks to be sure. She is working on her head, stomach (vomiting), mouth, spine and hips. It's so difficult to see the needles in her crazy fur. She was so relaxed that she actually laid down for a while. Time will tell.

As for the information regarding neurologists. I am not completely happy with my neurologist at Penn BUT Penn is the 2nd best animal hospital in the country (Cornell is the top). I would always recommend people to take their pets there. I feel so bad that happened with Stephanie. I can't imagine how difficult it would be to have a doctor treat you like that when you are working so hard to help your pet. I actually stopped emailing my neurologist b/c I was getting the feeling she was getting annoyed with me (and vice versa). That is why I pursued the holistic medicine. I will go back to Penn soon but needed a break for myself. As for BVN, I would ask for the information that was reported by the staff.

[Phyrie]

I LOVE Georgia's crazy hair! My Kiba has an "Alfalfa" on top of his head, but nothing as resplendent as Georgia's mop!

I've read some good things about acupuncture, in general, and if the treatments aren't breaking the bank, go ahead and finish them. If it helps, wonderful! If it doesn't, no harm done, and Georgia gets some nice relaxation out of it! ;-D Do they teach you how to massage her too? Kiba turns into a sack of mush-filled fur when I give him a massage. He goes to sleep if you rub his cheeks. Silly boy...

[Colby's Mom]

Hi everyone! I am determined to stay up to date with you all this time, even with a baby!

Thanks Deb, and everyone else for their support. I'm curious Casbe... what medicine did she put your Cav baby on?

I completely agree with Casbe about Dr. Jarboe. She has that laid back personality when you meet her in person. She is calm, and there is something comforting about the way she speaks to you... like it will all be okay. She is also extremely knowledgeable. The issue I am having (I hope) just deals straight with this receptionist that apparently thinks I am rude and keeps writing that in my file, even though I am not! I am not an idiot, and I know I need to be nice to the people that are keeping my dog alive and healthy!

However, the email I received from BVNS was a different story... it was not nice. Anyway, no need in arguing over it. As it stands, we are continuing with BVNS as they are the best in the VA area (in my opinion, and my vet's opinion) but we will go to another office and see if that helps so we are are not dealing with the same receptionist. If it turns out I continue to have problems and feel like I can't call and ask questions, well then, I guess we need to start figuring out where else Colby will go. I really hope it doesn't come to that, but such is life.

[Oliver & Henry's Mum]

Kelly, Georgia always looks so cute and happy! Today Henry gave himself some sort of "faux hawk" hairdo, and I instantly thought of sweet Georgia. By the way, when Oliver is on a course of Prednisone, he is required to take a "Pepcid AC" to offset the tummy upset. Perhaps Georgia simply needs a different OTC medication to help settle her tum. I certainly hope so, and I also hope your holistic approach offers at least a modecom of relief.

Stephanie, it's good to hear from you...new baby (like there can be an "old" baby) and all! I know your hands are so full right now. I hope with every fibre of my being that using a different location for this Clinic will bring different results.

As Cas pointed out, there aren't many options in Virginia for this sort of thing. I'm sure there are a few more there than we have here in "Sleepy Town" (London), Ontario. People travel from at least 100 miles away to visit the OVC at Guelph University, even coming from Toronto which of course is a large Metropolitan area. It is the best facility certainly in Ontario, if not Canada. I've met many people who have driven for at least 2 hours (one way) just for chemo treatments for their dog.

As I keep saying, it is SO important that the Human attached to the dog be treated like the parent of a very ill child, as that is just how we all feel. Apparently Stephanie felt the same way about the Doctor, but finds the issue is with the Receptionist. Unfortunately, I'm sure the Doctor doesn't have time for such nonsense and did what he/she felt was best to quash the situation, which I think we all agree should never have occurred in the first place.

My wish is that every one of our dogs receives the best possible care, and we have to continue to advocate for them, as they can't speak.

Irene, thank you for your opinion, particularly as a Medical Professional, and one who finds herself in the same heartbreaking position in which we all find ourselves once a diagnosis has been received.

It would be really be quite something if the BVNS weighed in on this but I doubt that will happen.

With the changing weather, I worry about our dogs. I hope everyone is "maintaining" a good quality of life right now and continues to thrive.

[Georgia's Mommy]

Everyone always comments on Georgia's hair. When I met her dad Micky, I remember saying his hair looked like a bad 80's perm. Georgia obviously takes after her daddy. We had our 2nd snow storm. Georgia has gone out several times. Had her back legs give out quite a bit early on but it didn't stop her. She's been doing well since the 2nd acupuncture. Very mild head rubbing and thumping. She's a total snuggle bug today. I always bundle her up when she goes outside (if you think her hair is crazy when it's dry....the rain and snow gives her big 80's hair!)...I'm posting the photo from today. She decided to roll in the snow/ice and flipped her hood over her face. This dog makes me laugh. I'm so lucky that she loves me

[RayC]

OK Georgia, I give up, which is your front end and which is your rear We are so blessed in the way our furry friends can cheer us. If I have an 'off' day I just look at Charlie's tail wagging away for all its worth and the world seems a better place. I hope your winter weather doesn't cause everyone too much distress. We've got away very lightly this year here in North Wales but maybe I shouldn't speak too soon.

[Oliver & Henry's Mum]

Georgia is entirely too adorable, and I can't believe I missed posting before now! I want to see a picture after that woolen hood is removed! Henry had some "comb over" effect going for him yesterday that reminded me of Georgia and her "wacky do's".

Ray, you are so right about how well our furry friends can cheer us! I know that Charlie is the light of your life, and she knows it too, and rightly so. ♥ She is such a beautiful girl, who adores her Daddy.

CathyC, before I forget...I love your new avatar!!! Your Cavalier family is as gorgeous as ever.

I hope all of our Cavalier friends, and those also suffering with this affliction are doing well this winter. I am saying nothing further as I worry about jinxing it. Hugs to you all!