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View Full Version : New to this forum & newly diagnosed CM & SM in NY USA.



Rdituro
20th March 2013, 12:43 PM
I live in NY in the US. I am new to this forum & I don't know if anyone else here is from my area. I have a 3yr old male Blenheim Cavi named Winston. He was just diagnosed with CM & SM with an MRI. His neurologist has him on liquid Gabapentin 1ml 3x a day, Prilosec 5mg once a day & Tramadol 2x a day. The Tramadol was just prescribed because he was still having quite a bit of discomfort just on the Gaba. I can't even begin to tell that this dog had no symptoms until just recently when he started to scratch his neck & back. After the MRI the neurologist said his condition is the worst she's ever seen & she doesn't understand why he is not exhibiting more serious signs. I think he's been living with with this since birth & he was just used to the pain. He's such an incredibly happy guy. We have a second opinion scheduled for Friday 3/29 in another state(NJ) with a highly recommended neurologist. Winston also has a very slight Mitral Valve Disease & PSOM. I would consider surgery but my concern is first his other conditions & second the neurologist says his nerve is so badly damaged that it really won't help him. I do realize he will have to be on meds the rest of his life but if it would prevent future damage I would do it. He is so happy & not suffering on these meds I would want to do everything I could for him. Any advice?

LilCav
20th March 2013, 12:50 PM
I am in your relative area (NY is huge!). If might PM you to ask which vet you went to.

It is very hard dealing with so many issues, especially in a dog that sounds as happy as you describe Winston. Wishing you the best of luck.

Also, welcome!

Karlin
20th March 2013, 01:15 PM
Hi and welcome, though so sorry that you have found us with a cavalier having these problems.

In your area, you are in easy reach of LIVS on Long Island and that is where I'd probably go. That said, they tend to be very pro-surgery. I am not sure if that is who you saw.

Many neurologists say that some of the worst scans they see are on dogs that have surprisingly few symptoms. Dr Marino at LIVS has said in the past that he would not expect a dog that suddenly acquired such levels of syrinxes to be able to liv with the pain but that perhaps as they come on gradually the dogs adjust somehow to either tolerate the pain over time or their internal system adjusts or maybe both.

Three however is fairly young and if your fellow has a very poor scan that does raise questions for you about what to do and the time scale you might be looking at. Unfortunately no medications halt this condition or prevent further damage and it generally does keep progressing. :( Surgery can halt it but doesn't work for all dogs and can have risks. Humans find it extremely painful to recover from as well so I always have kept this in mind -- I too would not choose surgery lightly.

Is your neurologist following Dr Clare Rusbridge's treatment algorithm? Her website has this as a download alongside much other very useful information: http://www.veterinary-neurologist.co.uk/

I hate when people have dogs on liquid gabapentin as this is not something most of us are familiar with in terms of dose so I cannot really tell what that equates to per day in regular gabapentin -- BUT you can consider asking about increasing the dose or trying Lyrica, more expensive but often works better.

There are other painkillers to try than tramadol as well. Different things work for different dogs and it tends to be trial and error to get the right mix.

lindylou
20th March 2013, 02:15 PM
icon_welcome
so sorry to read about winston i wish him well
looking forward to seeing some photos of winston
sending winston kisses and cuddles from louie and his mum

MomObvious
20th March 2013, 02:15 PM
Well let me start by telling this forum is FULL of information and other cavalier owners dealing with all kinds of medical issues and you will be surprised how many people from all different areas are members. I personally have no advice except that the advice you will find here is sound. Please keep us updated. I think its nice to have some support from other cavalier lovers too.

Sydneys Mom
20th March 2013, 02:30 PM
Welcome to the forum! I'm so sorry that Winston has so many medical problems, at such a young age too. I can't give you and advice as I have no experience with SM/CM, but the others nere who are unfortunately dealing with this are always happy to share information.

There are several members here who are from the NY/NJ area. I myself grew up in NY and am now in San Diego.

Please let us know how Winston is doing. We would love to see pictures too!

cavie3
20th March 2013, 02:41 PM
Hello and Welcome, I too am very sorry to hear about Winston and I can only second what other have said that you will recieve immense support from others on this forum as I have found.

rubles
20th March 2013, 02:46 PM
I'm sorry Winston has SM.
When my cav was diagnosed with Sm he was put on 600 ml liquid Gabapentin to start with prednisone as back up. This was NOT the best approach. So I took the advice posted here, sourced Clare Rusbridge's site and took a copy of her algorithm to my vet.
As a result Charlie's dose of Gabapentin was raised to 100mgs in capsule form administered 3x a day. The liquid was more expensive, formed clots and has a shelf life. He's also on Cimetidine 50mls 2x a day.

Since then Charlie is much better. We also have Tramadol for the days when atmospheric pressure is changing--those are his bad days.

You wIll receive excellent advice here and There are better days ahead for you and Winston.

Love my Cavaliers
20th March 2013, 04:56 PM
It's good you're getting a second opinion. I too found this site shortly after one of my dogs was diagnosed with SM. I opted for decompression surgery and she is doing so well 4+ years after her surgery - she has had a new lease on life. It's not for every dog, but for Riley, it was absolutley the right decision. Most dogs do well on some cocktail of meds, but as Karlin said, the SM does keep progressing. However, Winston may live a long and happy life once you find the right mix of drugs for him. Even if you opt for surgery, he'd still have to be on medication after surgery. Riley takes low-dose prednisone daily. That's the only medication that helps her, even post-operatively.

Pat
20th March 2013, 07:56 PM
I hate when people have dogs on liquid gabapentin as this is not something most of us are familiar with in terms of dose so I cannot really tell what that equates to per day in regular gabapentin -- BUT you can consider asking about increasing the dose or trying Lyrica, more expensive but often works better.

Brand (Neurontin) and generic oral solution gabapentin both contain 250 mg per 5 ml, so that dose would only be 50 mg. three times a day, which is a pretty low dose (depending on what he weighs).

I am going to start a separate thread, because I discovered that the oral solution contains xylitol, which is toxic for dogs. I also found that we discussed this here in 2009 (reference came up when I was googling) but this is a timely reminder because this is very serious.

Pat

Rdituro
21st March 2013, 01:40 AM
Thank you all so much. My neurologist is Dr Georgina Barone at Veterinary Medical Center of Long Island. She did explain to me that Xylitol is in the Gabapentin that you would get at a regular pharmacy but the GABA I get from their office, since it is given to dogs, does NOT contain Xylitol. The reason we started him on the liquid is because he is so allergic & sensitive to many medications & vaccines, her thought was it would be easier to adjust for him. So we started him on .6 ml which didn't do much, so we increased it to 1ml 3 times a day, after 2 days he needed to start Tramadol. He was originally on a very low does of steroids which completely knocked him out, totally lethargic. The only reason Dr Barone didn't recommend LIV is because of the support & aftercare staff. The doctors at LIV including Dr Marino are supposed to be wonderful. She recommended the neurologists & staff in Redbank NJ. It's about 2hrs from us so it's not too bad. If we are going to consider the surgery & the expense then I would rather go with the best reputation all around. Thank you for all your advice & I will check out the Clare Rusbridge site. I'm not convinced he's on the right med cocktail right now. I can tell when the meds are wearing off & he definitely reacts more during periods of atmospheric pressure. He also has a problem on some nights getting comfy. I'll keep you posted. Oh & Livcav I am on eastern Long Island.

Rdituro
22nd March 2013, 03:16 AM
http://farm9.staticflickr.com/8518/8578196175_b7129aaf31.jpg (http://www.flickr.com/photos/83549712@N03/8578196175/)
Winston with ball (http://www.flickr.com/photos/83549712@N03/8578196175/) by Rosemarie Dituro (http://www.flickr.com/people/83549712@N03/), on Flickr

Karlin
22nd March 2013, 10:39 AM
Ahhh he's very sweet. :)

It's not that there's an issue with liquid gabapentin as far as I'm concerned (I also think the xylitol levels are very low when it is there in human gabapentin but wish this would be investigated for using these meds in animals).... it's that I don't know how to compare the dose to capsules. It just makes it harder to get a sense of what a dog is on (eg low, medium or high dose).

Clare's algorithm is useful as it runs through a lot of the options. She thinks steroids should really only be a choice when there are no other options because there are so many potential side effects that also can make things harder for the owner -- eg the dog is often always hungry and becomes even more naggy than cavaliers tend to already be about food. :) If you get to the limit of what you can use with gabapentin and adding in some other things doesn't help, I'd certainly discuss trying Lyrica which tends to work when gabapentin cannot do enough. And Clare would generally always include a CSF inhibitor like cimetidine.

Some dogs do take a lot of back and forth adjustment to get meds right.

Different neuros take different approaches to surgery as well and I really think they all work about the same. I'd take claims of superior results with any one approach, with a grain of salt. I know of dogs that have gone through one of those surgical techniques with high claims, that have a seriously hard time in recovery, and also, all the dogs I know of remain on medications despite claims that few do. So for me, what I hear from owners does not fit the claimed results, for whatever reason. I am guessing that many people who continue to have difficulty do not return to inform the clinics they went to but instead they work with their vet (costs less) so maybe the feedback is incomplete.

Pat
22nd March 2013, 12:05 PM
Ahhh he's very sweet. :)

It's not that there's an issue with liquid gabapentin as far as I'm concerned (I also think the xylitol levels are very low when it is there in human gabapentin but wish this would be investigated for using these meds in animals).... it's that I don't know how to compare the dose to capsules. It just makes it harder to get a sense of what a dog is on (eg low, medium or high dose).

You must have missed my posts with the links about dosage and the amount of xylitol - this boy is taking 50 mg of gabapentin three times a day, so it's a low dose. 1 ml is equal to 50 mg.

And there is information on how much xylitol is contained and the effect on dogs, and it is not insignificant:

http://www.cavaliertalk.com/forums/showthread.php?43027-Liquid-Gabapentin-Contains-Xylitol-Toxic-to-Dogs

Folks reported back that they were not using "human" gabapentin but were having it compounded because of this issue.

Pat

Rdituro
22nd March 2013, 12:15 PM
Yes I am using the Gabapentin supplied by my neurologist which she assures me her supply does not contain Xylitol.

Rdituro
25th March 2013, 01:49 PM
So I've been communicating with Winston's breeder & she informed me that both his parents(whom I met) are free of SM, CM & Mitral Valve issues. I must say I shopped around extensively for the best breeder I could find & when we did meet her she was very helpful. She invited to meet her at a dog show to point things out to us. She brought her champion to hang out with us. When we went to pick Winston out at 6 weeks she had us take off out shoes & coats and she had us wash our hands with detergent that contained bleach. Of course she wouldn't let Winston leave until 8 weeks old. So she emailed me telling me how devasted she is over this news & that her & her husband would like to offer us a puppy from her next liter. I am dumbfounded! It's an extremely generous offer since I know she charges $2500.-$3000. for her puppies but I feel at this time I really need to focus on Winston & his care. What do you think of this?

Karlin
25th March 2013, 03:22 PM
If this is a good breeder who did fully health test, then it is a generous and kind gesture. :flwr: If you feel able for a cavalier -- realising the breed is always at risk of these conditions -- then of course you could consider the offer.

On the other hand -- I am sorry to say this, but I would not take a breeder's word that she has tested. I would ask if you can see the scan information from both parents. There are many, many people who breed cavaliers who will say they are health testing, doing MRIs, the proper heart tests etc and they actually are not. Poor breeders and backyard breeders have quickly realised this might be a selling point and probably rightly assume 99% of buyers will never ask to see any actual certs and confirm they are real and valid. The other thing is -- just having the parents free of MVD doesn't tell too much. To be breeding her dogs at under age 5 she needs to know that all four grandparents remained mumur-free until at least age 5, if she is using the heart results properly. A good breeder will definitely be doing this too. :)

If you go out to talk to her about another puppy I'd also ask if you can see the certs for the various parent dogs. Any good, caring breeder will be happy to share them and explain them to you.

Much depends on the age of the scan. Too many breeders are scanning when dogs are under 2.5 which is too young for a useful result to use for breeding purposes. Also if the dam or sire was now, say 5 or 6 and the scan was done at 2.5 then she'd actually have no idea if sM had developed in the meantime. The best situation is to have a parent scanned again at around 5 (and this is the information most meaningful to a breeder's future breeding programmes, too -- our Rupert's Fund has moneyto help cover costs of scans on dogs 5-6 and older for breeders.

Karlin
25th March 2013, 03:24 PM
You must have missed my posts with the links about dosage and the amount of xylitol - this boy is taking 50 mg of gabapentin three times a day, so it's a low dose. 1 ml is equal to 50 mg.

And there is information on how much xylitol is contained and the effect on dogs, and it is not insignificant:

http://www.cavaliertalk.com/forums/showthread.php?43027-Liquid-Gabapentin-Contains-Xylitol-Toxic-to-Dogs

Folks reported back that they were not using "human" gabapentin but were having it compounded because of this issue.

Pat

Oh thanks Pat! I have said before that I really need to bring your many extremely useful posts together... maybe have a Pat health library! :lol:

There's xylitol in many of those anti-tartar liquids you add to pet water too... :yikes

Thanks for the dose comparison.

You are right: that is a very low dose of gabapentin.

Rdituro
25th March 2013, 07:16 PM
Thanks Ladies I will definitely follow your advice & keep you posted.

njpetsitter
28th March 2013, 11:42 PM
We were just diagnosed with a trifecta....s/m, c/m and pmos....we are having surgery next wednesday....at LIVS with Dr. Marino and Dr. L. I, of course, have been booked on my vacation for over a year. My adult children will handle this for me and I will be getting updates via email every day. My dog is 2.5 and I'm hoping and praying this is the way to go. Only time will tell.

Love my Cavaliers
29th March 2013, 12:02 AM
I don't want to hijack this thread, but njpetsitter, my dog had surgery over 4 years ago. You can PM me if you'd like to hear some of what we went through with recovery. I'll just say it will be harder on you than your dog. Good luck next week.

Rdituro
29th March 2013, 09:33 PM
Wow that's crazy nj! We just got back from Redbank NJ 15 mins ago. We saw Dr Glass & Winston is having surgery on Thursday, we have to bring him in on Wed. Is Dr Marino using the titanium mesh? We are not doing that, Dr Glass has had great success with decompression surgery not using mesh. Where did you get your pup from? & where are you from? I'm sorry about all the questions it's just so interesting to talk to someone so close that is going through the same exact thing at the same time. Any way I wish you all the luck in the world. Please keep me posted on the out come & progress.

Rdituro
29th March 2013, 10:08 PM
I would love to know about your experience with this surgery & post op care. You can write it here on this thread or pm me about it. Do you have it written someplace else on this forum? Thanks for all your help.