tag:blogger.com,1999:blog-5787507856437303092024-03-05T17:46:52.799-08:00Riley's Beating SyringomyeliaThis is a blog dedicated to our Cavalier King Charles Spaniel puppy, Riley (registered name, Coosa Creek's Sir Riley, Lord of Essex) who was diagnosed with Syringomyelia at just 17 months of age. This will be the story of his triumph over this potentially debilitating and painful disease.Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-578750785643730309.post-45343794965768041462013-01-16T07:00:00.000-08:002013-01-16T07:00:07.131-08:00The end of the taper...<span style="font-family: Georgia, Times New Roman, serif;">It's been a great few months on the steroids. Since my last post, over two and a half months ago, Riley has never missed a meal and he continues to eat <i>ravenously</i>. Actually, he's kind of a pig! He can't stop the food thing. He even whines and cries a bit with excited anticipation at meal time, watching us prep the food. It's a bit rude and we're attempting to correct the misbehavior but, frankly, we're so thrilled that he gobbles up all of his food, we almost don't care!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The wasting that he's had is almost completely reversed. As you can see from this recent photo of him, his facial wasting is completely gone; </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">He has followed the taper to the end and after Friday night he will have no more. <a href="http://www.amcny.org/node/164" target="_blank">Dr. West</a> said that, typically, if a dog would have a "rebound" in his symptoms, it happens at the point when we go from daily dosing to every other day dosing, and that was almost a month ago.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">There is no doubt that his "air scratching" symptoms from his <a href="http://www.cavalierhealth.org/syringomyelia.htm#Chiari-like" target="_blank">COMS/SM</a> is definitely up from what it was a few months ago at the beginning of the steroids, but it's not any worse than it has been for the past few years prior to the "incident" and flare up last September.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">We are so very grateful to be starting off 2013 with our boy, back to <i>his</i> normal self. </span>Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com2tag:blogger.com,1999:blog-578750785643730309.post-39320315013824699792012-10-27T14:52:00.001-07:002012-10-27T14:52:06.451-07:00Riley, at 1 month on Steroids<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;">It's been 4 weeks since our vet visit where we started Riley on Prednisone (5 mg, every 12 hours). He started eating within 36 hours of the medication and, basically, hasn't stopped since. His appetite is voracious. He pees a lot, but he's adjusted to this very well and, such a good boy that he is, there have been no accidents in the house!</span></span><div>
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">Also, we started him on antibiotic therapy for Helicobacter, just in case that has been playing a role. Dr. Mlekoday wanted him to start when he was more than 3 weeks into the steroids and tolerating them well, so we started them this week, and he's tolerating those well, too.</span><div class="separator" style="clear: both; text-align: center;">
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;">Anyway, today's visit was with <a href="http://www.amcny.org/node/164" target="_blank">Dr. Chad West</a> at Animal Medical Center. He is Riley's new Neurologist. Such a rock star, that guy! Amazing mind and a kind personality. Riley really likes him, and so do we. This is the gist of things, and I'm quoting from his follow up email/consultation note to Riley's family vet (Dr. Mlekoday):</span></span></div>
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<span style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;">"Riley looks great and has been doing well at home. He seems to be handling the steroids fairly well; although, he has developed muscle wasting in his abdomen and along his spine. </span><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><span style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;">We discussed the typically recommended steroid tapering course and decided to initiate the taper at this time. I discussed that the taper will be gradual and unless there is recurrence, will follow this course:</span><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><span style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;">Prednisone 2.5 mg po bid X 4 weeks,</span><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><span style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;">Then 2.5 mg po Q24 X 4 weeks, </span><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><span style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;">Then 2.5 mg Q48 for 4 weeks. Then discontinue. </span><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><br style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;" /><span style="background-color: white; color: #1f497d; font-family: Calibri, sans-serif; font-size: 14.399999618530273px;">I recommended blood work be checked in 6 weeks to include cbc/chem panel/cpli, +/- gi panel. This should serve as a baseline to see how Riley handles the continued taper."</span></div>
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">So, as you can see, we're going to be doing steroids through the end of January. Not bad, so long as Riley stays hungry and asymptomatic. </span></div>
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">I asked Dr. West his frank opinion about all of the pancreatic markers, the concerns about Riley's diet, the possiblity of this being chronic pancreatitis vs. helicobacter, etc... and he said that he really thought those were all incidental to the central issue, being the immune-mediated inflammation in his brain. He he said that the cpli and gi panel are really sensitive tests and they often pick up on minute changes that, while clinically in the "abnormal" range, really tend to be in the "it's fine, leave it alone" range <i>for that individual.</i> His hope is that when we repeat bloodwork in 6 weeks, either things will be different and back to normal or else we'll come to realize (if there is little change from the other numbers) that this is just Riley's "normal". He said that, while it's <i>possible</i> that as we start to taper, Riley will start to lose his appetite again, it's <i>incredibly unlikely </i>and he'd be totally surprised if that happened.</span></div>
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">In any case, today was a great day. And as I type this, Riley is ravenously and enthusiastically chomping down on his plant-based dinner downstairs. It feels like all is well in the world, again. </span></div>
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<span style="color: #20124d; font-family: Georgia, Times New Roman, serif;">Here's hoping...</span></div>
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Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com4tag:blogger.com,1999:blog-578750785643730309.post-89321347661183214252012-09-27T08:56:00.000-07:002012-09-27T08:56:20.725-07:00What We Know Now....<span style="font-family: Georgia, Times New Roman, serif;">It's been an intense past 24 hours and I'm overtired. I've also got a full schedule of patients to see, myself, today. I'm trying to bang this out in my <b>one break<i></i></b> in my schedule today because, by the time I'm done and back home tonight there's <i>no way</i> I will be able to write coherently. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I also want to say, from the get-go, Michael and I both appreciate the barrage of calls, text-messages, emails, Facebook-comments, etc... and we're sorry that we just don't have it in us right now to respond to everyone individually. Please, please, please; understand it's <i>not</i> anything personal. There's also the fact that repeating the same information over and over from person to person makes it feel incredibly awful for us. That's one of the reasons we have this blog. We can put the info here and it can save us the upset of discussing and re-discussing the latest on Riley. Which brings me to that:
Riley had a bunch of tests yesterday and we have a lot of information. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"> This is the order in which the information came to us: </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><u><b>RILEY'S EGD (Esophagogastroduodenoscopy):</b></u> For the most part, it was pretty normal. Abnormal findings were some grass in his belly at the pylorus (opening to the duodenum (small intestine) from the stomach. Also, there was a single piece of paper towel sitting in the pylorus and across it into the duodenum. It was adherent to the lumen-- as though it was pasted onto the lining of the "tube" of his small intestine. It wasn't causing a blockage-- clearly, food has been passing through just fine. But this was an odd finding. We're not sure how he got the paper towel, though we know he was eating grass. Lots of dogs eat grass when their tummy hurts. All of this said: The lining of his esophagus, the sphincters on the stomach, the lining of the stomach and the duodenum were all very normal. No masses. No ulcers. They still took some biopsies just to look at and make sure they are as histologically normal as they appear. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><u style="font-weight: bold;">RILEY'S MRI:</u> Riley had a second MRI of his brain and cervical spinal cord. As you recall, his first one was back in February 2010. There is a LOT going on so, item by item:</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">* There is <b>Otitis in his Right Ear</b>; inflammation of the inner ear. (<i>in the above picture, the arrow is on that area.)</i> Unlike in humans, the shape of the ear canal and the underlying anatomy of the ear make it very difficult to assess the presence of deep, inner-ear inflammation or infection in dogs on routine physical exam. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">* There is a region of lower-grade<b> inflammation in the medulla </b>adjacent to the region with Otitis. (<i>in the picture above, this is the grey-ish area, to the right of the cursor. Note: the opposite side of the brain, which should be a mirror image, is not grey.)</i></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">* The large <b>Syrinx</b><i style="font-weight: bold;"> </i>remains. When compared to the size/length/thickness on the previous films, there is no significant change, but it's still huge. (<i>In the above picture, it's the long, white horizontal "cord" running from the base of his brain stem on the left into his neck. The tiny black line at the bottom of it is his </i>actual<i> spinal cord. The cord is compressed by the large, white Syinx</i>.) As Riley's Neurologist said, "It's probably the biggest syrinx that I've ever personally imaged on a patient." <i>Not</i> a distinction one wants to have. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">* There is <b>increased fluid in the fourth ventricle</b> as compared to his prior films. This, in turn, is putting pressure against the Cerebellum, and squeezing it in the skull.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Okay-- in plain English? The last two findings basically show a relatively stable case of </span><span style="font-family: Georgia, Times New Roman, serif; font-size: medium;"><a href="http://www.cavalierhealth.org/syringomyelia.htm#Chiari-like">Caudal occipital malformation syndrome (COMS)</a></span><span style="font-family: Georgia, 'Times New Roman', serif; font-size: medium;">/</span><a href="http://www.cavalierhealth.org/syringomyelia.htm" style="font-family: Georgia, 'Times New Roman', serif; font-size: large;">Syringomyelia in a Cavalier King Charles Spaniel</a><span style="font-family: Georgia, 'Times New Roman', serif; font-size: medium;">. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The prior two findings, however, point towards the events of this past summer, when we thought he might have a deep penetrating inner ear infection. The inner ear "lights up" on the MRI on the right whereas it does NOT on the left. The fact that the adjacent area in the brain (the Medulla) is lighting up, too, would hint at a possible local-spread or Meningitis. Based on this, they wanted to do a Spinal Tap. We said yes...</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><u style="font-weight: bold;">RILEY'S SPINAL TAP:</u> So ,technically speaking, they <i>didn'</i>t do a spinal tap. They did a <a href="http://img.tfd.com/mk/C/X2604-C-53.png" target="_blank">Cisternal Puncture</a>, which is a procedure where they pass a hollow needle through the posterior atlanto-occipital membrane into the cerebellomedullary cistern.</span><span style="font-family: Georgia, 'Times New Roman', serif;"> So they shaved the back of his head and "tapped" the cerebral spinal fluid from the area up high:</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">The rationale was that if there were anything infectious, our best chance of catching it would be right up in that local area, not all the way down in his lumbar spine.</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">They didn't expect this to be an infection- so this was mostly done to <i>rule out</i> that as a possibility. </span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">The CSF Analysis (results) came back overnight and are as follows:</span><br />
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<span style="font-family: Georgia, 'Times New Roman', serif;">These findings confirm that there is <b><u>no infection</u></b>. However, this also confirms that there is <i>inflammatory disease</i> in the presence of syringomyelia. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The Neurologist was clear that he sees this very often in Cavalier King Charles Spaniels with a history of early-onset syringomyelia. They can develop these autoimmune inflammatory processed in and around the structures of the syrinx. Though there is very little by way of hard data in large sample prospective studies on the matter, he assured me that he is dealing with this all of the time and that steroids are usually the way to go.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">They gave Riley a bolus injection of Solumedrol at a high dose (240 mg) and we are starting him up on 5 mg of Prednisone every 12 hours. We will do this for the next 2-3 weeks before starting a very, very, very slow taper over a 2-3 months period. The hope is that this will attack the inflammation and his neurologic reasons for inappetance will resolve. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">One potentially complicating factor in all of this is that steroids, on their own, increase thirst and hunger. So it might be a bit difficult to figure out <i>exactly why</i> Riley is eating, if he does start eating again. However, this should be readily apparent if he looses his appetite again when we start the taper.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Last night, when we came home from our 12 hours away from the house, Riley was fit to be tied. He wanted nothing to do with any of us, much less his food. He ate nothing. He drank nothing. He passed out and we were fine with that, because we know what he had been through.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: white;">I believe the steroids </span><span style="background-color: white;"><i>have</i></span><span style="background-color: white;"> kicked in because he woke me up crying at 3 AM to go outside and it was</span><b style="background-color: white;"><i><u> insane</u></i></b><span style="background-color: white;"> how much he urinated! ....that's steroids for ya! Still, he didn't want to eat his breakfast so we made the "paste" and "force fed" him again. I am wondering if his persistent inappetance this morning is in some way related to his being scoped/biopsied yesterday? Riley's Neurologist, in an an email just a few minutes ago, said, "</span><span style="background-color: white;">I cannot comment on scoping and its effects on anorexia, but I wouldn't be too discouraged yet</span><span style="background-color: white;">... [the results] </span><span style="background-color: white;">do confirm inflammatory disease even in the face of SM, so I am very optimistic that the steroids will improve things."</span></span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Stay tuned...</span>Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com1tag:blogger.com,1999:blog-578750785643730309.post-63257783499593186092012-09-26T09:10:00.000-07:002012-09-26T09:10:08.053-07:00Riley's Great Ordeal of 2012It's been too long since my last blog entry and I have been remiss in following up- so I'm sorry. Perhaps it's been avoidance on my part? I guess I've been hoping that this was not something clinically significant enough to warrant a blog entry. At this point, it's beyond obvious that it is.
Nearly 3 months ago, the week of July 4th, Riley started looking funny. By that, I mean that he didn't look like his normal self. He was mouth-breathing in a sort of a low-grade pant, and he was keeping his mouth ajar. All of the time. Whenever we would lean in for a kiss or try to touch or rub his face, he would push the right side if his face and his right ear into us. It was almost as if he wanted to scratch an itch or something.
After a few days of this, we had enough (because he had enough) and we went to our vet, Dr. Mlekoday. She did some tests and, initially, found that he wasn't producing tears in his right eye and diagnosed him with keratoconjunctivitis sicca. We started him on lubricating eye drops and cyclosporine ointment. This reversed things pretty quickly and within a few days Riley was producing a normal amount of tears again. But his face rubbing, scratching and his mouth-breathing was still present, so we went back to Dr. Mlekoday and she did more blood tests. While almost entirely normal, one test came back positive titer for Rocky Mountain Spotted Fever.
She immediately started him on two antibiotics: Baytril and Doxycycline. Riley was a trooper and he handled these meds very well without any apparent side effects. His mouth-breathing and the face-pushing stopped after just a few days. Dr. Mlekoday said that, just in case there were a deeper inner ear infection, we keep him on the Baytril for six weeks to be able to get a concentration that will penetrate to bone in the ear.
In retrospect, I now realize that it was just days after stopping the antibiotics that Riley started to develop anorexia. Originally, this was a mild inappetance. We would feed him his usual dry kibble and he'd walk away from it. Michael would try and hand-feed him. Sometimes he'd take it, other times he wouldn't. Eventually, the times he wouldn't take the dry food became too frequent and so we tried giving him the same food but in their wet canned food formula. Initially, Riley loved this. However, it wasn't long before he started rejecting this, too. We tried doctoring up his food: We'd make combinations of dry and wet food, sometimes with some baby food (which he loves) and sometimes with homemade tomato sauce (also something he loves). In the end, he just stopped eating.
I think we were in denial. Meal after meal, Riley would eat maybe a quarter of his food or none of his food at all. He would skip his breakfast and we would think, "That's okay, he'll eat at dinner." But then he'd only eat a teaspoon of food at dinner. This pattern went on for a few weeks while we were focused more in our other dog, Phoebe, who tore her ACL. Thats not an excuse: its an explanation. We were treating her non-surgically, and that involved 24/7 monitoring of her to keep her from walking and jumping. Though we were very successful with her and she has since recovered beautifully, it resulted in an unfortunate and unintentional ignoring of Riley's worsening anorexia. I don't know how I'll ever be able to forgive myself for that.
Anyway, it was about three weeks ago when we realized that Riley hadn't had a full meal- breakfast or dinner- for weeks. His spine was suddenly palpable and visible through is thick coat. His ribs were more prominent. His harness was so loose I could fit four fingers through it. Now, Riley was a bit overweight and could have stood to loose a few pounds, but this was too much, too fast. In fact, at the next vet visit, it was clear that he went from 20 lbs to 18 lbs in just a few weeks. I know that sounds minuscule, but that's 10% of his body weight which is considered clinically significant. We went back to Dr. Mlekoday.
This time, she did an abdominal ultrasound, an X-ray and every blood test under the sun. The x-ray showed him to have an abnormally small liver, though his blood work showed normal liver levels. On ultrasound, there were some "cysts" in his spleen, though these were not hyperechoic (i.e., they didn't light up) so they're probably old and reactive from some old infection or injury, a long while ago. There were no signs of any infection or disease. The only other "positive" findings were an abnormal cobalamin level and and increased PLI. Dr. Mlekoday felt that this was consistent with a malabsorption or malnutrition issue, which made sense since he wasn't eating. She wanted to repeat a bile acid challenge test, just to rule out any issue with his bile levels so we went back for that, and that was negative, too.
But Riley wasn't eating. AT ALL.
We started to get panicked. So we started grinding up his dry kibble into a fine powder in a spice grinder. Then we'd add water, turn it into a paste and force-feed him. The interesting thing was, he never fought us. He would lick his lips, as to indicatemthat he was hungry, but he wouldn't take the food from our hands, the bowl, the floor. The only way for him to eat was if we'd pry his mouth open, put a ball of the food on his tongue and then close his mouth. He'd swallow the food, but wouldn't really chew it. At this point, Dr. Mlekoday asked us to go back to Dr. Jason Berg who is the Neurologist who is an expert in Syringomyelia. Since it was 2 1/2 years since he last examined Riley, she wanted him to rule in or out the possibility that all of these symptoms could be neurological and come from his Syringomyelia. We went up immediately.
Dr. Berg did a quick and minimal exam which we found to be somewhat upsetting, but he was adamant that this was not Riley's Syringomyelia getting worse. He said, "If this were my dog, I'd scope him. It seems like its G.I." He put Riley on Cerenia and said that if this didn't suppress nausea or induce eating in a few days, to get off the Cerenia and get him to a G.I. specialist.
After 5 days, Riley was still not eating on his own and we were force feeding him. At Dr. Mlekoday's insistence, we stopped the Cerenia and made an appointment with Dr. Doug Palma, an Internal Medicine Specialist at The Animal Medical Center in Manhattan. She felt that a new set of eyes and ears on this case may bring about a different thought about what's going on.
Last Thursday, we brought Riley to Dr. Palma. I really like Dr. Palma. He is a doctor's doctor. Very thorough. Very methodical. He spent over 30 minutes examining Riley and then he called us back to talk. He said that, on clinical exam, this is not a dog who is manifesting signs and symptoms of any obvious GI disorder. He said, "my clinical gut instincts are that this isn't G.I." I like a doctor who listens to his gut. That's a big part of my clinical judgement and decision making process as a doctor, myself. He continued to say that there were obvious and reproducible pain responses on physical exam which were suggestive of advancing Syringomyelia. He was clear to acknowledge that he had just seen a neurologist and didn't want to disagree with him, but his clinical index of suspicion was very high that this was his Syringomyelia. He called his colleague, Dr. McCue who is a Neurologist at The Animal Medical Center, to come in and do an impromptu examination on Riley. After that exam, he was very clear that we should treat this as Syringomyelia-pain related first. As he said, "We can always go back and scope him if we need to."
So that's what we did. On their instructions, we brought Riley home and increased his 10 mg of Omeperazole dose from just once in the evening to every 12 hours (we doubled the dose. ) Again, as a reminder, Omeperazole is used in Syringomyelia in dogs to lower cerebrospinal fluid levels so that the brain swelling (that causes pain) is reduced. They also added Gabapentin (Neurontin) and wanted to see if this worked to resolve his pain and get him back to eating. The rationale behind this is that, since dogs who are in significant pain stop eating, if the Neurontin knocked out his pain, then he'd eat.
After one day on the Neurontin, Riley was "stoned"-- his gait was ataxic, beheld his head lowly, and he was (generally) out of it. However, for the first time in over two and a half years, his "hot spots" were shut off! I could touch his chest, his right side if his neck, I could rub him there and he didn't scratch! It was shocking. Even more shocking is that, lat Friday night, we put his dry kibble in is bowl and he put his head in the bowl and ate his dinner! We were so excited that this nightmare might finally be ending, with an answer as to why he wasn't eating. That hope was short lived. Riley never ate again without being force fed.
Dr. Palma was so generous with us, keeping in touch with us daily- sometimes many times a day- via email. Two days ago, we agreed that the Neurontin wasn't really "working" for Riley; It's just making him sedated but his scratching/Syringomyelia symptoms are back and he's still not eating. Clearly, this isn't Syringomyelia. At least, not entirely.
We woke up early this morning and, with a fasting Riley, came into the Animal Medical Center. We met with Dr. Palma before saying goodbye to Riley. The plan is to start with the upper endoscopy to look in his mouth and throat, down his esophagus, into his stomach and small bowl to look for any potential issues, like ulcers, masses/tumors, irregularities, etc... Then, while still under anesthesia, they'll take him up to the radiology suite and do an MRI of his brain and spinal cord, to check on his syrinx. They'll also be looking at his ear and the whole right-side of his neck. If there is any reason to suspect meningitis (which is not uncommon in these cases) they'll then do a lumbar puncture and cis-puncture (spinal taps).
It's been two and a half hours and he's still upstairs. We're waiting for an update and still holding good thoughts. More to come....
Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-46256784439187726812011-02-09T11:15:00.001-08:002011-02-09T11:34:39.153-08:00One Year OutToday is one year since Riley's MRI and the on-the-spot diagnosis of Syringomyelia. Riley is coming up on his 1 year anniversary of being on Omeperazole 10 mg nightly at dinner time. We are <em>so</em> grateful that he's been PAIN-FREE since the day we started this higher dose. We'll probably keep him on the Omeperazole for the rest of his life unless there's a compelling reason to take him off it at some point.<br /><br />The interesting bit of the story which didn't make it into the blog last year was that, a year ago today when we received the diagnosis, Ethan ran out of the MRI facility to get a mobile phone signal (damned AT&T) and called Riley's breeder in Florida. Syringomyelia breeding protocols at that time dictated that Riley's parents not be bred again, for fear of transmitting the gene forward. Ethan spoke with our breeder (Juli) and told her the diagnosis but it was too late- Riley's Mom, Isabel, had been bred just the day before. When we found out that Isabel was indeed pregnant (with a different sire) we struggled with the idea of getting another dog. We felt, though, that these "tainted" dogs needed homes as they had "bad genetic potential" at this point. After much discussion we decided to take a puppy from that litter.<br /><br />The day after my last posting on this blog (before today's) Riley's mom gave birth on April 7, 2010 to 5 healthy puppies. Happily- they all found forever homes. On June 10th, we brough his brother Charlie (ACK reg. "Coosa Creek's Whispers of Chandler") home with us. Charlie has been great so far and at 10 months old, no reasons to believe he has SM, though only time will tell.<br /><br />Juli was so supportive through the whole process with Riley. She's really been making strides to screen all of her dogs and to help wage the battle against SM in the CKCS community. <br /><br />So this is where we are now. Today. SM, first year out. We have no idea what this might do other than help someone out there who, someday, finds out that their beautiful baby has this horrible disease. And we hope that checking in periodically, regardless of what the futures holds for Riley, in some way helps others affected by this scourge of a disease.<br /><br />Today is a great day, indeed.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi46B4c0A2EFtjj0zLAWlhIgtJMqvDijPu1Ks0O-UkmiqHUluTLrBNtl9iLb-N1kn7jH5hJehYBt6VtVX7hnltMdo-CwSC5EHwq0FApv2bhyphenhyphenqAQMzzBfUF6RVX0Cy5tV4N3MDjVqa2P_Ig/s1600/rileychalie.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 299px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi46B4c0A2EFtjj0zLAWlhIgtJMqvDijPu1Ks0O-UkmiqHUluTLrBNtl9iLb-N1kn7jH5hJehYBt6VtVX7hnltMdo-CwSC5EHwq0FApv2bhyphenhyphenqAQMzzBfUF6RVX0Cy5tV4N3MDjVqa2P_Ig/s400/rileychalie.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5571774678395584402" /></a><br /><br />Riley (<em>left</em>) and brother Charlie (<em>right</em>)Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com2tag:blogger.com,1999:blog-578750785643730309.post-43138424474005517452010-04-06T05:48:00.000-07:002010-04-06T05:59:18.576-07:005 Weeks and Counting....It's been 5 weeks since raising Riley's dosage of Omeperazole from 5 to 10 mg. He's still yelping-free. He's running, jumping, playing, teasing his sister something awful... and, basically, doing all of the things we would expect a 19 month old Cavalier King Charles Puppy to be doing. The "air guitar" scratching persists, but as we've been told, that will always be present. In truth, it doesn't bother him at all and it's more of an unconscious "tick" than an annoying habit or repetitive behavior.<br /><br />We are so lucky. He is so fortunate. We feel tremendous gratitude for this pain-free time he is having. We still take each day, one day at a time, grateful for this amazing "recovery".<br /><br />Here's a quick/short iPhone video of him running around in the yard this past weekend:<br /><br /><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyAVjZ0q4_PWEuhJsEKnKUGJK61mA52OsGiP9nPRYA9T5dkwFFfyO-zVHB9UqH8WC8B9MaZZHDHrfRIjOBGtA' class='b-hbp-video b-uploaded' frameborder='0'></iframe>Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-70543028620441443582010-03-13T16:31:00.000-08:002010-03-13T16:56:16.657-08:00DecisionIt's been a while and I apologize for not getting back here in the past two weeks. Between getting Dr. Rusbridge's consultation, discussing it amongst ourselves, coming to a decision and then reviewing it with our family vet, Dr. Mlekoday, we found ourselves on our way out of town for 5 days and it's been nuts since we came home. Let's catch up.<br /><br />We decided that we are going to hold off on surgery. We realize that this is a risk, but so is the surgery. The bottom line is that, with all that we know now in March 2010, there still isn't a lot of data from prospective, large-sample studies about longer-term outcomes in Syringomyelia in the CKCS. While Riley's condition is likely to deteriorate over the course of his life there is no such guarantee. Ultimately, surgery to decompress is still evolving and new additions and techniques continue to emerge. One of our hopes is that in forestalling surgical intervention we might buy Riley time until better surgical outcomes are established with newer procedures and techniques. <br /><br />Another concern is that we have to live with the outcome of the decisions that we make. I know that might sound strange to say but having been through life-challenging illnesses with our other companion dogs (Blackie and Chandler) we know intimately the process that goes on in your mind after the fact. Even when you do everything "right" you still second guess yourself wondering if you "Could have done more?" or "Should I have done less?" Etc... One thing we knew for sure is that if Riley went immediately for surgery and had an undesirable outcome, we would forever be chastising ourselves for not having attempted less invasive/medical treatments, first. So with that information, we decided as a family to follow Dr. Rusbridge's protocol for treatment of SM with medication.<br /><br />The first thing we noticed was that Riley was on a very low dose for Omeprazole. At that point, he had been on it for just over a week and he was still in discomfort and having yelping "episodes". We decided to take him to the higher-range of the dose for Omeperazole and doubled his 5 mg evening (once a day) dose to 10 mg. Within 24 hrs, his yelping calmed down and he began to start running around the house and acting more spry and puppy-like. It was almost too good to be true.<br /><br />We left for Las Vegas for Michael's birthday weekend just 2 days into the new dose. Our dog-sitter was well briefed on what to do and what to expect. We were actually looking forward to being away so that we could see if there was a notable difference 5 days later when we came home. And what a difference there was! Our dog-sitter reported just one middle-of-the-night yelping "episode" which was quick but with no other issues and no apparent distress. We came home 5 days ago and it's been 5 yelp-free days. As we expect, he continues to scratch and do the "air guitar" though it is markedly decreased. Riley is chewing his toys, running around the yard (and our living room) chasing Phoebe, kissing, snuggling and being very delicious and puppy-like, again. He's in no apparent distress and he's just the happy ol' Riley that we know and love.<br /><br />We know that there is a very good chance that this might not last. It might not last for long, even. But he's doing well now. He's had a few good days. Today was a great day. And, if at some point we have a run of bad days, then we'll follow the protocol and switch him to Cimetidine, and if that's not working, Neurontin, or Lyrica, etc... and if the day comes that we can't manage him with medication, then we'll find out what the best information on surgery is. <br /><br />In the end, we're all learning about this as we go along and just doing the best we can. One major "life lesson" we learned last year when we suddenly found ourselves facing a diagnosis of severe and aggressive malignant melanoma in our dog Chandler, was that you take every day, one day at a time. You know that awful dreaded day will come at some point. But, as cliche as it sounds, none of us know how long we have here. None of us know what's in store for us tomorrow or the day after. All we can do is give gratitude that today, the Omeprazole seems to be working and Riley isn't in pain. <br /><br />Today is a good day.Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-52034937537269065012010-03-01T10:02:00.000-08:002010-03-01T10:22:28.128-08:00Dr. Rusbridge has SpokenBelow is the Report from Dr. Rusbridge. She makes very specific recommendations with regard to medical management as well as surgical management, though she stops short of making a recommendation/ endorsement of one route over the other. <br /><br />Below her report followed by our response to her, followed by her reply back to us. Clearly we have a lot to think over.<br /><br />- - - - - - - - - - - - - - - -<br /><br />28th February 2010<br /><br />Dear Dr Ciment<br /><br />Re: Riley, a 18mth male Cavalier King Charles Spaniel<br /><br />Thank you for sending me Riley’s medical notes and MRI scan. I was sorry to hear of the difficulties you<br />have been experiencing with him.<br /><br />History<br /><br />Riley was diagnosed with syringomyelia secondary to a Chiari-like malformation on 9th February 2010. You were prompted to obtain an MRI scan after a weekend where Riley had multiple episodes of postural pain. Riley is also having distressing episodes of pain which appear to wake him from sleep and is more tentative about going up and down stairs. Riley has displayed sensitivity to having his ears groomed on the right and also has the characteristic phantom scratching at the right side. However, despite having episodes of acute pain, Riley still has a good exercise tolerance and shortly after these episodes of vocalisation he is willing play with the other dog. The main questions are how much discomfort is he in and whether or not he should be medically or surgically managed.<br /><br />MRI images<br /><br />MRI scans of the brain and upper cervical spinal cord are available and they reveal a Chiari-like<br />malformation (occiptal bone hyperplasia/COMS) with secondary ventricular dilation and extensive<br />syringomyelia. The syringomyelia extends from C1 to the caudal extent of scanning (C6); it is likely to<br />extend further down the spinal cord. The maximum measured diameter was 7-8mms. There was<br />involvement of both spinal cord dorsal horns, but in keeping with the clinical signs, there is more damage on the right.<br /><br /><br />The phantom scratching behaviour is thought to be part of a neuropathic pain syndrome<br />relating to a disorder of processing through the spinal cord dorsal horn and generally<br />signs of scratching are seen with syrinxes which are greater than 5mms. There is<br />ventriculomegaly of all the ventricles and a small quadrigeminal cyst extending from the<br />4th ventricle. There is no middle ear disease.<br /><br />Management<br /><br />You are right in your assessment that the main treatment objective is pain relief. It is difficult to know what these dogs are feeling. Using my own pain score, I would give him a score of 3 where 0 is normal and 4 are dogs with compromised activity. I enclose details of this pain score (below). Regarding the decision of whether or not to have surgery, this is quite a difficult choice because surgical management at best improves the situation but does not cure it. In Chiari malformation and syringomyelia in humans a foramen magnum decompression will result in syrinx collapse and an improvement of clinical signs in<br />approximately 80% of cases. The improvement in clinical signs is mostly due to improved cerebrospinal<br />fluid (CSF) flow through the foramen magnum and patients may still have issues due to the syringomyelia.<br /><br />In dogs, all of the long-term follow-up studies that I have seen, including my own, have also found an ~ 80% success rate in improvement of clinical signs. However, follow up MRI scans have shown that the syrinx has not collapsed. Also I have found that there is a high recurrence rate. I found that 45% of my cases still had a good quality of life two years post-operatively, however many of these dogs still had signs relating to the syringomyelia and ultimately many dogs will eventually deteriorate - this can be from as early as two months post-operatively. Therefore my general advice is that surgery is the best option if medical management is not sufficient in controlling the dog’s signs of pain or neurological deficits. However, surgery is unlikely to be a lasting solution and medical management may still be required.<br /><br />However, in Riley’s case you also have to take into consideration his young age and quite severe disease. There is a high chance that his clincial signs will progress and there is an argument that surgery may slow that deterioration. If I was operating on Riley I would seriously consider doing an additional procedure (e.g. interventricular shunt) in conjunction with a foramen magnum decompression, just because I know from experience that a foramen magnum decompression is unlikely to give Riley a lasting quality of life. However I have no experience (yet) whether this will lower the failure rate.<br /><br />If you decide to opt for medical management in the short or long term then I would advise a combination of a drug which would reduce CSF production in addition to a drug which relieves neuropathic pain and has a site of action at the dorsal horn. Examples of drugs which reduce CSF production are the antacids omeprazole and cimetidine and a diuretics such as furosemide. The drug I more commonly use, although there is no scientific rationale for it (yet), is cimetidine which is dosed at 5-6mg/kg three times daily. I tend to use this drug over omeprazole purely because it is licensed for dogs in the UK (although not for CSF reduction). The dose of omeprazole is 0.5-1.5mg/kg once daily. You don’t give Riley’s weight, but assuming he is approximately 7kg then a 5mg once daily dose of omeprazole seems an appropriate starting dose. If omeprazole has not altered Riley’s signs then you might want to try cimetidine as an alternative otherwise it would suggest either these drugs are ineffective or that a neuropathic analgesic should be given in addition.<br /><br />The neuropathic analgesic I use most commonly is gabapentin dosed at 10-20mg/kg two to three times daily. I generally start at the lower dose and build up. Pregabalin (Lyrica) can be a better choice for some dogs as it can be a more effective pain relief for syringomyelia with less sedation; however, its considerable downside is that it is more expensive. The dose rate is 5mg/kg twice daily; both pregabalin and gabapentin are unlicensed for treating canine diseases, i.e. there are no published clinical trials although have been used for many years by many clinicians. Potentially they can cause drowsiness and are metabolised through the liver, so that I recommend that liver function is monitored on a six to twelve monthly basis. For some dogs I add a non-steroidal anti-inflammatory drug (NSAID) in addition to the other drugs. I do not have a particular preference at this time, although I am currently evaluating a long-acting drug called Trocoxil and I am quite happy with the early results. I am not sure if this drug is available in the USA. Otherwise any NSAID can be tried; the response to NSAIDs, as you know, can be quite individualistic. Some veterinary neurologists recommend corticosteroids for treating this disease; I tend to use them as the last option because of their long term side-effects, especially in younger dogs. They can be the most effective drug if the dog does have neurological deficits, for example weakness or ataxia (wobbliness).<br /><br />In summary, I do think from your description that Riley is in pain, however this pain appears to be short<br />lived and probably relating to impedance of CSF flow through the foramen magnum. Sensitivity to touch<br />and the scratching is most likely related to the syringomyelia and this sensitivity may become more apparent with time. In my opinion it is worth at least giving a trial of analgesics because it is difficult to know what these dogs are experiencing on a day to day basis and an improvement in demeanour, exercise ability, etc. would suggest that the dog was uncomfortable. If Riley is unchanged or is very sedated then there is an argument for not using these drugs.<br /><br />With regard to surgery, there is no easy answer. It is likely that if surgery is performed now that the episodes of screaming, etc. will improve. The scratching will continue but may be improved. However, there is a chance that all of the signs will recur before Riley is a middle-aged dog. However, at that time he may be successfully managed medically. The converse argument is that if the signs could be successfully managed medically, is it better to hold off surgery until medical management is no longer successful. I am afraid I do not have that answer to this dilemma which is part of the reason why I work so hard trying to prevent this disease and develop a better surgery/medical management!<br /><br />I hope that these notes are helpful. Please email me to clarify any further details. I am away from the 5th to the 13th of March.<br /><br />Yours sincerely,<br /><br />Clare Rusbridge BVMS PhD DipECVN MRCVS<br />RCVS and European Specialist in Veterinary Neurology<br /><br />Stone Lion Veterinary Centre, 41 High Street, Wimbledon, SW19 SAU<br />Fax 020 8944 0871 (SLVC) 020 8786 0525 (private)<br />Email: neuro.vet@btinternet.com<br />http://www.veterinary-neurologist.co.uk/<br />for information on syringomyelia, FOPS, Lafora’s, epilepsy, spinal disease and more<br /><br />- - - - - - - - - - - - - - - - -<br /><br />Dr. Rusbridge.<br /><br />Thank you so much for your thoughtful and detailed report. We have have reviewed it twice and just two questions for you.<br /><br />When we spoke with Dr. Berg, he made the analogy of Syringomyelia to someone who is squeezing a marshmallow. His point was that as long as the Chiari Malformation continues to exert pressure on the Cerebellum and the syrinxes and hydrocephalus persists, there is "pressure". He suggested that if a person were to pinch/squeeze a marshmallow for just a few minutes and then release the pressure, the marshmallow would revert to a more full state. Perhaps it would not revert fully to it's original state, but mostly. Compare that to someone who pinches a marshmallow for hours and hours on end. It is very unlikely that when they release the pressure that the marshmallow would puff up at all. His analogy suggests that the longer we allow the syrinxes to increase pressure in the CSF, the great a risk of permanent nerve damage that would be sustained even after surgery. He stated that he was advocating for surgical management because the sooner we did the FMD, the sooner the pressure would be off the nerves and the less likely that Riley would sustain longer-term nerve damage. Is there, then, an argument that to preserve the integrity of the nerve tissues, the sooner we decompress, the more tissue is salvaged? Clearly, Pregabalin and Gabapentin work to alleviate neurologic symptoms but do nothing to address the longer-term, mechanical injury to the nerves/spinal cord from longer-term compression. Would we be "losing time" and risking further (permanent) nerve damage by exploring medication options which may alleviate symptoms while not addressing the underlying pathology?<br /><br />With regard to a surgical recommendation, you suggested placing an inter-ventricular shunt in addition to performing an FMD alone. When I asked about this procedure at our original consultation, Dr. Berg recommended against it. He said that he has seen longer-term issues with the shunt not being well tolerated. He said that he's noted it moving around/ slipping, irritating the dog in the longer term. His concern is that an active puppy who will be again running, jumping, etc... is not a great candidate for such a shunt placement. I wondered if you had different longer-term results with your I-V shunts than he? As a surgeon myself, I understand that we all have procedures we're better at than others. Perhaps an I-V Shunt is a procedure that Dr. Berg is not as comfortable with and therefore his outcomes are different? I don't know. Should we decide to follow your surgical recommendation, who would you recommend we see for this kind procedure (i.e., the FMD in combination with the I-V Shunt)? We are willing to travel quite a ways for this, if need be. Certainly within the United States (I'm assuming we couldn't get Riley to the UK for surgery with you due to quarantine laws and the amount of time he would need to be in recovery before taking a long flight home.)<br /><br />Ethan Ciment<br />- - - - - - - - - - - - - - - - - - - - - -<br /><br />Yes - there is an argument that the sooner the surgery is performed then the less chance of permanent damage. This makes sense as an argument - I am not sure that is being borne out in clinical practice but this "lack of being sure" is because of the absence of hard data not bad experience.<br /><br />With regard to the other surgical options - yes shunts are prone to failure and complications. The other problem is that I cannot give you the direct benefit of experience because I have not done this combined procedure yet - which is why I said I would consider it. There are 2 cases similar to Riley that I have ongoing at the moment which I am also considering it for hence my choice of words in the report- the owners have yet to decide. There is a problem being the first and also doing something new when you have already got an established technique. The other option - and probably safer is to do the first surgery and if there is not a substantial improvement then add a shunt.<br /><br />hope that helps<br /><br />Dr Clare Rusbridge<br />http://www.veterinary-neurologist.co.uk/<br />for info on syringomyelia, FOPS, Lafora's<br />disease, epilepsy, spinal disease and moreEthanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com2tag:blogger.com,1999:blog-578750785643730309.post-8425075615494733232010-02-23T05:01:00.000-08:002010-02-23T05:21:43.402-08:00Contact v2.0Sometimes you need to abandon email, mobile devices, etc... And just PICK UP THE PHONE!<br /><br />I came home from the gym at 6:30 am and there was still no email response from Dr Rusbridge so I called over to her office in London. Her assistant was very sweet and helpful. Apparently, she has been emailing me but the messages never made it to my inbox(or spam box, which I've been checking nearly hourly.) SO GLAD I CALLED!!! Now, with the proper address and other info, I am on my way to the bank to get an international bank cheque and then we shall overnight all of Riley's stuff. Hopefully, in a few days, we might have her expert recommendation. <br /><br />Of course, all of this has me thinking... <br /><br />I think I've been hoping that she will make a clear-cut, "Yes you <span style="font-style:italic;">must</span>" or "No, you <span style="font-style:italic;">mustn't</span>" recommendation. On some level, this would alleviate some of the responsibility that comes with having to make this kind of decision for a loved one. Of course, there <span style="font-style:italic;">is</span> the possibility that she could come back with an equivocal recommendation and that would leave us right back where we are now- totally torn. I suppose, on some basic level, I need to come to terms with the reality that Michael and I still ultimately must make this decision and be able to live with it, either way. However I may wish to emotionally abdicate responsibility and let someone else step in and take control (and "be on the hook" for the consequences) it's just now hitting me that even the choice of following Dr. Rusbridge's ultimate recommendation <span style="font-style:italic;">is still a choice that I/ we would be making</span>. In the end, I want to do what's best for Riley. Nearly equally important, however, is that we make a choice that we both can live with and that will not haunt us for years to come, regardless of the outcome.Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-42232633711982187592010-02-22T13:11:00.000-08:002010-02-22T13:25:30.285-08:00A Difficult WeekendSo we're still waiting to hear back from Dr. Rusbridge. It's been 5 days since our one and only email contact with her and she has yet to respond to my last email asking for information as to where I should be sending this material. I can only surmise that she's traveling, away from the office, or that she has Tuesday-Thursday office hours (which seems likely, based from some stuff on her website.) Sadly, this means that we're <span style="font-style:italic;">still</span> waiting to find out where to send all of the materials, consultation reports, MRI films, etc... so she can do the consultation.<br /><br />Meanwhile, after speaking with our family vet, we decided to start Riley on 5 mg of Omeperazole, daily. This is one of the first line medications used/recommended in the medical management of Syringomyelia, as it has a side-effect of lowering the production of Cerebral Spinal Fluid (CSF). This, in turn, could potentially lower the pressure in the syrinx at the base of the brain/spinal cord and alleviate his symptoms.<br /><br />Sadly, this doesn't seem to be working. If anything, Riley has become more sensitive, his "episodes" are more frequent, and he has some hind leg lameness. He's not jumping up or down as much as he used to, and he's taking stairs (both up and down) very cautiously and that's both in and out of the house. Clearly Riley's not feeling great. Yesterday afternoon, he was lying on my lap. I was petting him gently, stroking his hair and as I often do, I told him "<span style="font-style:italic;">I love you, little man</span>." He looked up to give me a kiss (which is what he usually does when I tell him this) and as he crooked his neck upwards he let out a frightening yelp and then he froze, locked in place, guarding against this horrible pain that suddenly gripped him. He seemed unsure as to whether he should lay down, sit up, or what to do... so he just froze in place. It was heartbreaking.<br /><br />I'm starting to become very conscious of time, ticking away. I'm getting really concerned that we might be unnecessarily delaying a surgery that <span style="font-style:italic;">needs</span> to happen. Still, I'm even more concerned going into this and making the decision without Dr. Rusbridge's input. After all of my research over the weekend there's one thing that's very clear: The research is conflicting. There are <span style="font-style:italic;">no</span> large sample populations, <span style="font-style:italic;">no</span> large prospective studies and it really seems to be a case-by-case situation with respect to doing surgery or not. For that, I want the world's premiere expert on Syringomyelia to have some input into this decision. So let's all hope we hear from her by this time tomorrow.Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-81319870423442000552010-02-18T07:39:00.000-08:002010-02-18T07:47:50.076-08:00We Have Contact!!!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5GxiCsFG0gwv67GBJxOn9rgSSO-F5swoi0Yu0KhyMPlN5XqfaZj816eT8BwrZdM1dFINI01zhS6016pNN8YG5LImXLfKMau51FvzesbQf8NV9q1WP_jHE-i3ZYbC7N_Yetoy2KziXhQI/s1600-h/IMG_2176.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5GxiCsFG0gwv67GBJxOn9rgSSO-F5swoi0Yu0KhyMPlN5XqfaZj816eT8BwrZdM1dFINI01zhS6016pNN8YG5LImXLfKMau51FvzesbQf8NV9q1WP_jHE-i3ZYbC7N_Yetoy2KziXhQI/s400/IMG_2176.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5439610638972316914" /></a><br />After emailing Dr. Clare Rusbridge (<span style="font-style:italic;">the</span> leading expert on SM in the CKCS) I heard back from her (via email) this morning. I am gathering all of the documentation, consultations, reports and MRI images and getting them international-express mailed out to her this afternoon. <br /><br />We are so excited that she will be reviewing this case, and we're really grateful for her generosity with her time, expertise and we're hopeful that she can see through this, understand our concerns, and help us to make a better decision for Riley.<br /><br />More to follow...Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-17531696240000534542010-02-15T11:33:00.001-08:002010-02-15T12:28:01.839-08:00Riley's Consultation with the NeurologistWe took Riley up to se <a href="http://www.animalspecialtycenter.com/services.php#">Dr. Jason Berg</a> who is the Neurologist up in Yonkers, New York who our family veterinarian <a href="http://www.westchelseavet.com/meetourvets.html">Dr. Jen Mlekoday</a> recommended.<br /> <br />First, a word about Dr. Berg. He was kind, affable, friendly and great with Riley. He gave us almost a full hour consultation without feeling rushed and we left having all of our questions answered to our satisfaction and understanding. Dr. Berg reviewed Riley's clinical history and his MRI "films" (quotations because they're all digital nowadays- no more film involved.) Here are the bullet points/ highlights of our discussion:<br /><br />* Dr. Berg said that 3 out of 4 times when he gets a CKCS with SM, he recommends starting with medication therapy and holding off on surgery. This however is NOT his recommendation with Riley. Even though Riley has very mild clinical symptoms and his "episodes" of pain have been very few and far between (and very short lived) Dr. Berg feels that, in conjunction with the <span style="font-style:italic;">severe</span> findings on his MRI, and his very young age, surgery is the better route. In his words, "On a scale of 1 to 10 where 10 is the most severe, Riley's clinical signs and symptoms are about a 2- maybe a 2 1/2- out of 10, but his MRI findings are an 8 or 9 out of 10."<br /><br />* The most common procedure employed in surgical management of this condition is called FMD- Foramen Magnum decompression. The principle of this surgery is to restore normal Cerebrospinal Fluid (CSF) flow from the brain into the spinal cord and back by removing the bone at the back of the skull (supraoccipital bone) and part of top of the first vertebrae. This may be combined with a durotomy (cutting the meninges) with or without patching with a suitable graft material. Of late, in much of the veterinary literature, there has been a trend towards applying a Titanium mesh over the surgical area. However, this has been associated with scar tissue formation. In many cases, this compresses the spinal cord as much (if not worse) than the original malformation/ condition. It is for this reason, that Dr. Berg <span style="font-weight:bold;">does NOT recommend</span> this procedure. There is also a variation on this procedure where a "shunt" is put in- like a tube- looking to restore connection so that the CSF can travel through this area of narrowing at the base of the skull. He also <span style="font-weight:bold;">does NOT recommend</span> that procedure. He said that dogs like the CKCS are very spunky and active and an insecure shunt sitting at the base of the brain could jiggle around later on after the surgery causing irritation, compression or worse to the adjacent spinal cord. Dr. Berg said his surgical recommendation would be to do the FMD with <span style="font-style:italic;">interposition of the temporal musculature and fascia</span>. While this procdure can be technically difficult, if not impossible, in smaller breed dogs, Dr. Berg said that this is very simple to accomplish in the CKCS as the breed has abundant musculature at the back of the head about the temporalis muscle and it's underlying fascia. He uses this muscle and fascia and sutures it into the space where the bone was removed, holding the contents in place. There is no chance for "rejection" as no foreign material is being implanted, and the scarring potential is lower.<br /><br />* As far as starting with Medications, there is a treatment algorithm on how to approach medication vs. surgical treatment in the CKCS. Step 1 is to administer medications (like Furosemide or Cimetidine) which lower CSF production. Depending on responsiveness to this treatment, there are other steps such as NSAIDS, Steroids, Gabapentin, and the list goes on. Dr. Berg said that he has not seem much clinical improvement in pain levels using medications like the first-level CSF reducers in dogs as young as Riley with a large a Syrinx. Dr. Berg was very clear that, in his experience, both medication and surgery do very little to alleviate the "air guitar" or "Phantom scratching" that CKCS with SM do. Even if we opted for surgery, Riley would likely continue to do the "air guitar" and "Phantom Scratching" afterwards, but the treatment goal is to alleviate the <span style="font-weight:bold;">pain</span> associated with the activity, not the act itself.<br /><br />So, our decision is boiling down to this paradox: Right now, Riley is mostly asymptomatic. If his current level of irritation/pain were to never change, then surgery would NOT even be on the table right now. However, as SM is a neurological condition that is progressive, the longer we wait <span style="font-style:italic;">until</span> he has more constant and significant pain, the more potential damage is being done to his spinal cord and nervous system. So do we operate now on a young and healthier dog and put him through this significant surgery (even though he currently has less clear-cut signs and symptoms of pain) because we know that the severity of the disease in young (under 2 yrs old) CKCS with findings as severe as Riley's tend to suddenly progress really quickly and badly? Or do we chance it and wait and see if he will perhaps <span style="font-style:italic;">not</span> progress and, hence, <span style="font-style:italic;">not</span> need the surgery (though, knowing that if he did, he would be disadvantaged for having waited)?<br /><br />Dr. Berg used the analogy of compressing a marshmallow with your finger. If you stop pressing it after just a short time, the marshmallow will puff back up. Maybe not 100%, but it will restore shape and volume to some degree. However, if you wait and hold your finger pressed into that marshmallow for much longer, it becomes less likely that any of that compressed space will decompress and restore back to it's original size/volume.<br /><br />What he says makes sense. And I know that nobody wants to take their happy puppy and bring him into surgery one day and have them open up his skull, operate around his brain-stem and spinal cord, and then deal with the aftermath, the nursing him back to health, and the enormous cost associated with this surgery. Still, the cost of waiting or delaying treatment, could be greater in the longer term.<br /><br />So, we have a LOT to think about. I have reached out to <a href="http://www.veterinary-neurologist.co.uk/">Dr. Clare Rusbridge</a>, BVMS PhD DipECVN MRCVS RCVS. She is a Certified European Specialist in Veterinary Neurology who has written the definitive papers on treatment of SM in the CKCS, and she is arguably the world's leading Veterinary Neurologist on this topic. I'm hoping that if she has the time to take a look at Riley's case, perhaps she can help us negotiate some of these difficult decisions.Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com0tag:blogger.com,1999:blog-578750785643730309.post-73786774699393011002010-02-10T06:55:00.001-08:002010-02-10T08:41:02.873-08:00Riley has SyringomyeliaIt was those three simple words that instantaneously crushed our hopes of enjoying a normal future with our 17 month old puppy, Riley. All of the hopes, plans and dreams of our beautiful puppy growing up into a healthy, active dog who lives well into his teens seem less sure with the uttering of these three words: <span style="font-style:italic;">Riley has Syringomyelia</span>. We found out yesterday, at 3:05 pm, after his MRI was done and the radiologist was kind enough to take us aside and slowly go through his films.<br /><br />A bit of history on Riley: We have had 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 Spaniel (CKCS)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."<br /><br />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.)<br /><br />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.<br /><br />We spoke with our family Vet, Dr. Jen Mlekoday, this morning and she felt that we should head over to see Dr. Jason Berg up in Yonkers, NY. She said that he was involved in some of the earlier studies and research in the United States on the phenomenon (and subsequent epidemic) of SM in CKCS. So we have an appointment with him for Monday morning and will likely have more information then. We have been looking, though, at surgical specialists in SM in The CKCS around the country and there are <span style="font-style:italic;">quite a few</span>, so we'll need to do our research before committing to anything one way or the other. We have started Riley on Rimadyl 25 mg daily to help decrease inflammation around the inflammed structures. This is step one and we'll see if this helps at all.<br /><br /><span style="font-weight:bold;">A PICTURE SAYS A THOUSAND WORDS:</span><br /><br />Below on the left is a "Normal" MRI scan of the Brain and Spinal Cord of a Cavalier King Charles Spaniel. It is labeled and for anatomic structures:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuFBDU1HGMjMfHmLYaR0G33TAePYruo-41nQ_OGCPv9Ti8v813Ywxem9mZCThu5dO10eChT5HvHILsrmFjJ_CIICxd4LzfJDZEQV6dRsB1Rl43pip2jj5cz1qjsr42V-AOFN1JC1ZYf_g/s1600-h/NL+MRI.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuFBDU1HGMjMfHmLYaR0G33TAePYruo-41nQ_OGCPv9Ti8v813Ywxem9mZCThu5dO10eChT5HvHILsrmFjJ_CIICxd4LzfJDZEQV6dRsB1Rl43pip2jj5cz1qjsr42V-AOFN1JC1ZYf_g/s320/NL+MRI.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5436639177087740866" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />Below on the right is <span style="font-style:italic;">not Riley</span> but a labeled scan of another Cavalier King Charles Spaniel with Syringomyelia. Note the differences from the above (normal) scan:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXfXza_qM8hPqaGbt62nlzQmsp7lWPlXNku0J9VeQCwB1JQAl3bSrxO_sCKX9xXthtQ12_n4UWe8Po1v5H0XCDmorhVTXj0ZyR-csINNnUvG4IFXYEX8sqxF-fGaQH0AjzSyisOwl-qDQ/s1600-h/CavalierHealth_SM_MRI.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXfXza_qM8hPqaGbt62nlzQmsp7lWPlXNku0J9VeQCwB1JQAl3bSrxO_sCKX9xXthtQ12_n4UWe8Po1v5H0XCDmorhVTXj0ZyR-csINNnUvG4IFXYEX8sqxF-fGaQH0AjzSyisOwl-qDQ/s320/CavalierHealth_SM_MRI.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5436639580913439986" /></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />And here, below, is Riley's MRI from yesterday. Note the severe swelling of CSF about the spinal cord, the extrusion of the medulla through the foramen magnum, the hydrocephalus and edema in the ventricular system. The syrinx, though not visible in its entirety on this view, extends the full length of his C-spine:<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoET451SYfaVpdoJ13dM5ZwQZZDZ5EagkNsOX5Rqt1O93AtNRFvmGgEC0yQOeT1u3ceEDMHmim63TcqumrKzhgm13vNXFz1WxbprrBLXABc6NQLKMc_24Z3iYQTldf_PGi3rUFCxdmpgo/s1600-h/RileyMRI.02.09.10.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoET451SYfaVpdoJ13dM5ZwQZZDZ5EagkNsOX5Rqt1O93AtNRFvmGgEC0yQOeT1u3ceEDMHmim63TcqumrKzhgm13vNXFz1WxbprrBLXABc6NQLKMc_24Z3iYQTldf_PGi3rUFCxdmpgo/s400/RileyMRI.02.09.10.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5436645914504578242" /></a>Ethanhttp://www.blogger.com/profile/14509163527761921258noreply@blogger.com3