This is a hard entry for me to write. I will post what we wrote in a mass email we sent out last night. However, in thinking about how we want to proceed with things, we feel strongly that this website- which has always been about celebrating Riley- will continue to be the same. It will NOT become a medical chat board/update board, etc... Instead, we will be putting a link on here to another page which will have that information. But this is a "sacred space." This is Riley's page. This is about all things good and all thing Riley and it will remain that way. That said, here's what I emailed last night:
Tuesday, February 9, 2010
Please forgive the blanket email, but it's the quickest way to share the news with the people we love without feeling overwhelmed with the need to be on the phone with everyone about this.
It was three years ago next week that we last sent out an email like this. At that time, we shared the news of Phoebe's new diagnosis of Cushings Disease and our determination to not "fight it" but, rather, to shift our focus to maintaining her wellness. As I said in that email, "This may sound like semantics to some of you, but there is a deeper meaning behind this that many of you may appreciate." Well, it worked. We're now nearly 3 years into her treatment, she's healthier than ever-- getting older, mind you-- but she's totally controlled from a Cushing's Perspective. And over 50% of dogs with Cushings are gone within the first 2 years of diagnosis. Clearly, from surviving her IMHA as a puppy and now thriving in spite of Cushings Disease, Phoebe defies all statistical reference data.
We need some of that to rub off on her baby brother, Riley.
We have had serious concerns about Riley since he was a puppy. Specifically, we've been worried that he may have Syringomyelia (SM) which epidemic with the Cavalier King Charles Spnaiel breed. Our initial concerns were, admittedly, based on some very broad symptoms that are not uniquely specific to SM. We brought this up with our vet in NJ when he was a puppy and he poo-pooed it. When we switched Riley over to our old vet back in New York City last fall, we mentioned it to Dr. Mlekoday and she said (correctly) that the signs and symptoms of his "air scratching" and his extreme tenderness (that causes yelping) when touched under his arms and around his neck should just be presumed to be a tick unless (at some point later on) it is suddenly accompanied by pain. Well, it never has been until now. Of late, his scratching can go on for quite prolonged periods of time. It's totally maniacal behavior. Compulsive. Uncontrollable. But he's only 17 months old, and lots of behavioral quirks can go on until after he's two. So, really, there has constantly been this underlying belief of, "It's nothing and he'll grow out of it."
The tipping point was this past weekend. Ethan was sitting quietly on the couch, Riley was fast asleep next to him. All of a sudden, for no reason, he leaped up out of his sleep and started shrieking and yelping in pain. We couldn't calm him. He did it a second time later that night when sleeping next to Michael and then he started to favor his back left leg. All of this together triggered a gut instinct in Ethan and it made us very suspicious. (Ethan's side note: Call it clinical intuition, but my practice of podiatric medicine and surgery is -like most good clinicians- based on my gut feelings in many ways. My gut told me this was not good.)
We decided that, even though an MRI is phenomenally expensive, the cost of not knowing and not treating this early enough could be greater. So we called yesterday and scheduled him for the MRI today. We just came back from his MRI and he's resting comfortably at home. Sadly, my instincts were correct; Riley has Syringomyelia (SM). A pretty significant case of it, too. The lesion (syrinx) goes from the brain-stem/Cerebellum as far down as the MRI imaged (past C-6). More than likely, if we scanned him all the way down to the tip of his tail, there'd be more lesions, too. That's what the veterinary radiologist said.
Our vet is out of the office on Tuesdays so we will be speaking with her tomorrow and we have an appointment with her on Friday, unless she tells us to cancel it and just go directly to the Neurological Surgeon. We have a very fine one here in New York City and we would speak with him first before going elsewhere. I have been looking, though, at surgical specialists in SM in The Cavalier King Charles Spaniel around the country and there are quite a few, so we'll need to do our research before committing to anything. There are medications that we can use, though it seems more and more that they are about controlling symptoms and pain and they don't offer the sustained relief and prolonged "correction" that surgery can offer. Sadly, this is surgery on his brain and spinal cord, so the risks are very high. Again, the risk of doing nothing, is higher.
So, this is where we are at. When we have some more information, we'll share it...
Thanks for your love and support,
Ethan, Michael, Phoebe and Riley