My puppy was just diagnosed with SM

[Reptigirl]

So sorry to hear your pup is suffering. I did not get to read every post but I just wanted to say I've been in your shoes! Our pup came to us at 12 weeks old showing symptoms. By 6 months old his symptoms were getting pretty extreme. While his MRI did not show SM at the time just CM his symptoms were very sever. He had bald spots on his head, shoulders and hind legs from all the rubbing, scratching & chewing. He had unexplained yelping fits, he would chew and lick his toes constantly, he had the typical "phantom scratching" while walking, we were unable to walk him on a collar or take him out of the house his fits got so bad.

Here are a few videos of our puppies symptoms BEFORE medication:
http://youtu.be/cFGwlwg4sgA
http://youtu.be/s8TIAuOVrhc
http://youtu.be/hMqE_pJWMW4


At 6 months old he was started on Lyrica and it was a wonder drug! He is now 2 years old. We switched to Gabapentin because it was much cheaper. He takes 100mg 3X a day and leads a nearly normal life. (He just can't tolerate wearing a collar or harness for more then a trip to the vets.) He also takes omeprazole once a day. He is nearly symptom free unless I'm late on meds.
http://youtu.be/RkODVTY2rN0

To make a REALLY long story short, I ended up rescuing his parents. It turned out the "breeder" was nothing but a puppy mill. It took me several months of convincing the lady the parents had to have it too. Well eventually I guess she realized her "breeder" dogs were in less then ideal condition and gave them to us... They we in horrific conditions. Once we got there immediate issues addressed we had the male MRI scanned. He has SEVER SM. The syrinx blocked nearly 90% of his spinal cord. He was losing control of his hind legs and has had some seriously scary pain episodes.... His neurologist gave him less then a year to live.... Here we are over a year later he takes 200 mg Gabapention 3X daily and omeprazole daily. He is doing fantastic considering how advanced his condition is. A few months ago he had a month long episode and we thought we would need to put him down. We did a short course of steroids and he has bounced back! At 5 years old he still acts like a puppy. He does occasionally have bad days but they are minor compared to how they were before medications. He definitly has more good days then bad days. When we have a bad day we do the best we can to keep him comfortable and usually in a day or two he is back to his happy self.
http://youtu.be/ecWD-TwW_wY


My only point here is even if they are affected young don't give up on them! While surgery may be the best option, it's not the only option. Medications have worked wonders for us. Our meds had to be adjusted several times find the right dosage. They also may need to be increased over time. But they do work. If you are unable to do surgery, medication is still an option! I would not put a puppy down without trying medication 1st. We opted out of surgery for both of our dogs. Eventually we may consider it for our pup but at 2 years old the medications have kept him extremely comfortable and nearly symptom free. We have pet insurance on them. Thankfully! We would not be able to afford there vet care without it. Insurance has really saved there lives.

[Hopeful4now]

Hi Reptigirl, thanks for your post. Really gave me hope ;-) Is Lyrica in place of Gabapentin or can it be used with it? I'm not giving up on her before we give the meds a chance to work, no way in hell would I do that, but I'm also not going to lie to myself. Hearing your story just brightened my morning, so thanks for that. You said your puppy is doing well now, but did you ever get him re-MRI'd? Does he show SM now in addition to the CM? My little girl clearly had SM as well from the MRI. Today's day five of the meds, so let's hope they kick in.

Mini update: Last night she was more herself and played with my husband, but every time we take her out she just wants to come back in. Normally she loves to walk and run. Did a little scratching and during the night had one scratch with a tiny yelp. I can't help but think she's in pain when I look at her eyes and when she sits in weird places in the apt just kind of aloof. But if I worry about that, I really will go nuts.

Let's just hope today is a good day.

Thank you all for your kind responses. I truly mean that.

[meljoy]

Thanks Sydneys Mom and Mel, that means a lot. Mel, did your Leo fare better on meds or did you go the surgery route? I hope he's ok. ;-)

Hiya,
Ive PM'd you

[susandavis1]

I am sorry to hear that your puppy has sm. I know there are people on the board here you will have lots of good advice for you. What is your puppy's name? Sending you postivie thoughts

[Blondiemonster]

I have also been reading your posts. Im so sorry about your pup. I know all too well how i felt when my girl showed symptoms out of the blue and i had her mri'd. We opted for meds since it helps my girl. Her story is similar to reptigirls 5 year old. A syrinx just as bad and she is a trooper. We take long walks, she runs of the stairs at 20 miles an hours, she jumps on the couch and plays fetch. Ocassionally we also have days that are less good and i just let her rest and do things at her pace. I appreciate and cherish every moment with her. Thr love from these creatures is unbelievable. Theu give you everything , and i owe her everything as well. She has given my life the sunshine i never even knew was possible. Even with it all; every minute with her is so worth it. Please do not give up hope yet. Surgery can be a miracle for some dogs. Its a fair chance for your pup. I am not saying you should do it at all costs but if Claire says it gives your pup a chance i would consider it for sure.. I too have heard of a vet in holland that does this surgery but obviously clare is the best. Whatever decision you make we will be herr to suppirt you. Once again; try to be strong for her! She needs you right now; she needs her mommy to be as calm and have as much sleep as possible... Love to you


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[Autaven]

I'm one of the people who's been viewing your thread as well - and while I'm sorry I can't be of help advice wise I just wanted to send you some positive thoughts from our family. We've just went through the same ordeal with our first dog who has just turned 3 and I know how heart wrenching it is.

[Hopeful4now]

Thank you all for your replies...just a short update:

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

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

Thanks again for all your well wishes. I feel a little calmer today knowing that I'll be speaking to Clare soon and am doing everything humanly possible for this little girl. I'll update this thread when I have some news.

[Pipsqueak7]

As you will know I am new here also, but I am NOT, unfortunately new to the worry and panic we have because of our dogs. I completely understand your anxieties, and also pleased that you are feeling a little calmer now. Being and keeping calm is not always very easy!

I am also sorry to hear that you have not been able to insure your little one, as I know from past experience that has been a great help. However, they are our 'babies' and if we had not had insurance, we would still have strived somehow to finance whatever necessary to give them a good quality of life. All you can do is try to help them which is exactly what you are obviously doing.

Kind regards, and thanks for taking the time to post on my thread. These forums can be a great help as I discovered when my dog was so ill last year.

[Karlin]

One additional thing to consider about medications–you will easily, within 2 years or so of paying for something like gabapentin and especially for Lyrica, which many more severely affected dogs need, reached the amount of money you would have paid on surgery upfront.

Setting aside all the other considerations and concerns that influence choices -- when I 1st started treating Leo, I didn't expect him to live such a long time on medications alone (I really assumed he probably would have just a couple of years of life given that he had a fairly wide syrinx, and I vowed to give him as normal a life as possible–as it turned out, he has quite a short but wide syrinx that is very centrally positioned and which has never given him any serious pain sessions even over all these years) and I also didn't expect that I would need to keep increasing the dose of some of the more expensive medications–this was 7 years ago, when the condition was less well understood. If a dog is kept on medications, this will require regular return visits to a neurologist to keep adjusting them–it is far better to be seeing a neurologist than just working with a vet who won't really understand the condition or the usage of medications that are not actually officially recognized for animal use, such as gabapentin. In retrospect, I do wonder if surgery would not have been the better choice from the start–and it certainly would have been more cost-effective, assuming that I didn't need to keep giving medications over the 6 years or so that I have. I have easily surpassed €5000– which is $7000 or so–in medication for Leo. As they get older, many of them do need to switch to the far more expensive Lyrica–Leo is about at that point, because the level of gabapentin he is currently on is actually a bit above what is generally recommended as the limit for a dog of his size. If I switch to Lyrica, that will more than double the monthly cost of his medications. It would be quite rare for dogs that have had surgery to need to go on something as strong (and as expensive) as Lyrica.

These are all elements to consider. I think often people choose not to opt for surgery primarily on a cost basis, but in reality, that's probably a false choice. Even if I had taken out a loan on the interest rate of the time, which I would easily have paid back long since, it would have been significantly less for me to opt for surgery than to have gone for the alternative of 6 years of medication, with that continuing on into the future at ever greater expense.

I suppose another consideration is that I think severely affected dogs that are treated only on medications–and often will have these up and down days when they go through extreme pain–cause a lot more distress and anxiety for owners, who can be woken many times in the middle of the night by shrieking sessions, as many here will have done, or who will have to endure daytime pain sessions that can be very disturbing, and there is just a lot more general uncertainty. I've only had to go through one such session, and that is when Leo fell off the bed and we think, probably jarred his syrinx. I don't think I could go through that on a regular basis, but that's me. If he had repeated that session, I already had plans to take him to London for surgery with Dr. Rusbridge–at the time we thought it might have been a sign of a worsening of the condition where these sessions would become more regular. However, he has never had one since. He now has a heart murmur as well, and it may be that the other scourge of this breed, MVD, becomes the greater problem. I've been thru MVD with one of my Cavaliers who passed away last summer, and to be honest, it was far worse than I have dealt with in terms of worry and distress, compared to 3 Cavaliers with SM (two very mildly symptomatic and one moderately symptomatic).

I do think that you probably will want to make a decision one way or another fairly quickly as you get a sense of options. Postponing surgery lowers the chance of success and allows the condition to worsen, especially when it seems to be worsening so rapidly. For example, there is no way I would advocate waiting months to do something–I would either be trying to arrange surgery as soon as possible, either in France or over in the UK, or I would make the decision to proceed with medications and hope for the best and as much time as possible. Getting a 2nd professional opinion will be helpful to you.

[Hopeful4now]

Karlin, thanks for your post. I understand all sides of this SM mess and unless Dr. Rusbridge can tell me that my dog has GREAT odds (which I don't think anyone would say because they just don't know) for having a pain-free and medication-free life after surgery, I don't think I could put my pup through it. She wouldn't know why we're doing this to her, why she feels bad. I mean yes, it's a small period of time of pain for a shot at a normal life, but maybe it's just the newness of all this and my emotions are talking here. Like I said, if surgery was a slam dunk and wasn't so experimental and iffy, I'd do it in a heartbeat. But it's not definitive. But I haven't spoken to Dr. Rusbridge yet, so we'll see if my opinion changes...

As far as going somewhere else in Europe for surgery if I even go that route, I'd rather take her back to the US and live there for a bit where I have the support of my family and friends. I have no one in London nor do I have a place to stay. So the add'l costs there would extreme. Oh, and the good thing about living in France is that unlike the US, medicines and vet costs (compared to the US) are MUCH cheaper. But we do plan on moving back to the US within the next three years.

As far as moving fast, I think I need to seriously consider everything that's going on here and take a minute to think everything through. My dog got an MRI within a day of having her first episode, so I have to be proud that I got her treatment and just take a week or two to really think about all our options and after speaking to Dr. Rusbridge.

The breeder received my diagnosis, bill and letter explaining the situation in the mail yesterday, but I have a bad feeling she will not pay me a dime. Oh well, that's life and the dog is my utmost concern.

Will update this once I talk to Clare.

I was hesitant to post my dog's name because it made all of this too real, but I'm strong enough to do it today. My dog's name is Dagny.