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goda
1st June 2011, 09:34 PM
Luka’s medication regiment is helping, he is however still having sporadic SM episodes?
Luka’s sensory function is not impaired is the SM due to the medullary kink?
Can the medullary kink be corrected?
Is FMD and shunting a good idea in Luka’s case?
Is Luka a surgical candidate?
What is the cost of surgery?
What are the dangers of surgery?
The water on his brain, can that be drained to prevent damage?
If surgery is an option, will Luka have to continue his medication regiment due to the 3 lumbar dialations?
As with all medicinal treatment, at some point the GABApentin will no longer have an effect, are there other synaptic inhibitory drugs for dogs?
What level of activity should he stay in?
What is an ideal weight for him?
Would adding fish oil to his diet help with inflammation?
Is Hydrotherapy advisable?
Should he get acupuncture?
I’ve noticed Luka being more aggressive since he has taken the prednisone, are there alternatives to prednisone that would affect him less?
At what age should we test Atlas for SM?

What am I missing?

Karlin
1st June 2011, 11:35 PM
I can answer some of these.

The kink in the spinal cord cannot be fixed.

Gabapentin does not necessarily stop working (for most dogs it seems to work for their entire life -- though dosage may need to be increased) -- the problem is more likely that the condition keeps progressing and thus medication regimes tend to need to keep being adjusted, but not so much the gabapentin (or Lyrica) stops working even though the dose generally needs to be increased over time. Most often you need a mix of medications that is regularly reassessed. My most affected dog has been on gabapentin for over 5 years and it still does the job. Lyrica -- the more recent and 'advanced' version of gabapentin -- is really the only other similar option. Most dogs need one or the other. Often people find Lyrica works when gabapentin grows less effective. (though I actually found Lyrica didn't work as well at any of the dosages I tried).

There's no reason to check Atlas for SM unless you wish to MRI him or he shows SM symptoms. As almost certainly, more than half of all cavaliers will eventually get SM -- and perhaps closer to 70%, going on the 800 cavalier sample (not yet published) plus other research samples -- he is more likely to eventually develop a syrinx than not. So in a progressive condition, the later you choose to do an MRI, the more likely you will see a syrinx, and you are someday more likely to see one than not. The issue is more whether he becomes symptomatic.You could scan at 3 and see no syrinx and no symptoms, and scan at 7 and see a syrinx and no symptoms -- which will give you (costly) information but not mean you should do anything. Most symptomatic dogs have a syrinx by age 4 but dogs can have very late onset symptoms.


Luka’s sensory function is not impaired is the SM due to the medullary kink?

I don't understand what this means. What do you mean by 'sensory function' and how would that relate to SM? He shows pretty serious scratching and pain behaviour as well as odd hind leg motions in the video you posted which means he is having typical functions controlled in the hind brain and spinal cord area affected by his degree of SM. That is why several people here advised that he seemed to be showing SM symptoms as he is showing the typical impairments and pain these dogs get with this condition.

I don't think Dr Kline (nor anyone west of the Mississippi?) does the mesh surgery -- really only a couple of neurologists and a neurosurgeon do it. You'd likely need to fly to the east coast to have it done.

I'd ask why shunting has been recommended since most of the time it is no longer done.

There's no answer to whether he will need to continue on medications if he has surgery. Most dogs seem to need to but it is impossible to tell in any given case in advance. The people doing the mesh surgery at LIVS have said most dogs do not need medications after that procedure. However most of the dogs I am familiar with that have had the mesh surgery are on medications still. Generally the surgery cannot fully address neurological damage that has already occurred.

goda
2nd June 2011, 12:44 AM
I can answer some of these.

The kink in the spinal cord cannot be fixed.

Gabapentin does not necessarily stop working (for most dogs it seems to work for their entire life -- though dosage may need to be increased) -- the problem is more likely that the condition keeps progressing and thus medication regimes tend to need to keep being adjusted, but not so much the gabapentin (or Lyrica) stops working even though the dose generally needs to be increased over time. Most often you need a mix of medications that is regularly reassessed. My most affected dog has been on gabapentin for over 5 years and it still does the job. Lyrica -- the more recent and 'advanced' version of gabapentin -- is really the only other similar option. Most dogs need one or the other. Often people find Lyrica works when gabapentin grows less effective. (though I actually found Lyrica didn't work as well at any of the dosages I tried).

There's no reason to check Atlas for SM unless you wish to MRI him or he shows SM symptoms. As almost certainly, more than half of all cavaliers will eventually get SM -- and perhaps closer to 70%, going on the 800 cavalier sample (not yet published) plus other research samples -- he is more likely to eventually develop a syrinx than not. So in a progressive condition, the later you choose to do an MRI, the more likely you will see a syrinx, and you are someday more likely to see one than not. The issue is more whether he becomes symptomatic.You could scan at 3 and see no syrinx and no symptoms, and scan at 7 and see a syrinx and no symptoms -- which will give you (costly) information but not mean you should do anything. Most symptomatic dogs have a syrinx by age 4 but dogs can have very late onset symptoms.



I don't understand what this means. What do you mean by 'sensory function' and how would that relate to SM? He shows pretty serious scratching and pain behaviour as well as odd hind leg motions in the video you posted which means he is having typical functions controlled in the hind brain and spinal cord area affected by his degree of SM. That is why several people here advised that he seemed to be showing SM symptoms as he is showing the typical impairments and pain these dogs get with this condition.

I don't think Dr Kline (nor anyone west of the Mississippi?) does the mesh surgery -- really only a couple of neurologists and a neurosurgeon do it. You'd likely need to fly to the east coast to have it done.

I'd ask why shunting has been recommended since most of the time it is no longer done.

There's no answer to whether he will need to continue on medications if he has surgery. Most dogs seem to need to but it is impossible to tell in any given case in advance. The people doing the mesh surgery at LIVS have said most dogs do not need medications after that procedure. However most of the dogs I am familiar with that have had the mesh surgery are on medications still. Generally the surgery cannot fully address neurological damage that has already occurred.

The scratching is a motor neuron response not a sensory neuron response. On top of that there are more options than the FMD surgery and I want at least ask her professional opinion on them. Luka is only 2.5 I want him to ideally live until I am 100 so 70 more years.

:) So his sensory neurons are just fine and working and all the medication is doing is dulling those stimuli.

From the MRI it is clear where the pressure is coming from so I think FMD surgery is a pretty decent option for him. His heart is strong. I just feel like I am missing questions I want to ask her.

anniemac
2nd June 2011, 01:10 AM
The scratching is a motor neuron response not a sensory neuron response. On top of that there are more options than the FMD surgery and I want at least ask her professional opinion on them. Luka is only 2.5 I want him to ideally live until I am 100 so 70 more years.

:) So his sensory neurons are just fine and working and all the medication is doing is dulling those stimuli.

From the MRI it is clear where the pressure is coming from so I think FMD surgery is a pretty decent option for him. His heart is strong. I just feel like I am missing questions I want to ask her.

I would always go in to see Ella's neurologist with a list of questions and always forget to ask something. I would suggest saying you may have other questions you forgot and what is the best way to get in touch with these questions. I think what karlin said was good information and it is key that many have to adjust medication so it would be good to figure out the best way to keep in contact.

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Reptigirl
2nd June 2011, 11:59 PM
Luka’s medication regiment is helping, he is however still having sporadic SM episodes? ~ I have 1 with sever CM/SM, 1 with moderate CM/SM & 1 is sever CM. You have to really try to find the best possible dosage with the medication. But it is unlikely the symptoms will go away completely. All of mine have "flare ups". They have good days & bad days. There is not really a "cure" for SM. Just management for the pain. Had a good long talk with our neuro again the other day about this. Really you are just trying to keep them as comfortable as possible. I noticed weather changes tend to set my 3 off... But all of them still scratch.

Luka’s sensory function is not impaired is the SM due to the medullary kink? ~ From my understanding the SM is an inherited condition in the breed. That is why it is so important that the parents be MRI scanned. They syrinx or cyst are believed to form because the skull is too small for the brain. This causes the brain to herniate into the spinal cord. Redusing the flow of spinal fluid. So I guess the kink would reduced fluid flow and contribute to the SM. But other small breed dogs tend to have the kink as well but they don't have SM. My youngest was diagnosed at 6 months with sever CM but NOT SM YET... and he had a very sever kink in the medulla.

Can the medullary kink be corrected? ~ No there is no way to "fix" it. Surgery may help to relieve pressure on the brain so it might reduce some of the pressure on it.

Is Luka a surgical candidate? My Neuro tells me the younger dogs have a better change because the longer the SM progresses the greater risk of permanent damage.

What is the cost of surgery? I was quoted $3000 - $5000

What are the dangers of surgery? This surgery is high risk. Do a LOT of research on it! I'm still in limbo with my 3. Remember it is a good 8-12 weeks of COMPLETE cage rest. NO excitement. There are no guarantees the surgery will be successful. Or how long it will be successful for. Some dogs go on to develop scar tissue within a year of surgery. There symptoms return the same or even worse then before surgery. While other dogs do wonderful after surgery and live a happy pain free (or nearly pain free) life.

If surgery is an option, will Luka have to continue his medication regiment due to the 3 lumbar dialations? ~ A large # of the people I have talked to say there dogs still need medication after surgery. Each dog & each surgery is different.

What level of activity should he stay in? ~ Whatever he is comfortable at. I try to treat my dogs as if they were "normal" and keep them moderately active. At first I TRIED to restrict my dogs.. but the youngest was 6 months at diagnosis. You can't restrict a puppy from play. So I try to make judgements for the moment. If they are having a good day then we spend it outside.. if they are having a bad day we stay inside. The 2 that are the worst like to play fetch, tug of war, playfully chase chickens, take walks..etc. I do try to keep our activities around the house. NONE of my dogs can stand a collar so I have to use a harness. Even then they can only stand it for short periods of time. I have found that outings.. such as dog walks & parks really set them into a flare later that night & the next day. I don't think it's so much the excitement as it is the harness putting pressure on them. So I tend to stay home with them. We live on several acres of fenced in land so they still get lots of excitement without going for long walks.

What is an ideal weight for him? Each Cavalier is different. You want to watch there weight especially because of MVD.

Would adding fish oil to his diet help with inflammation? ! Mine have always gotten Fish Oil, not sure if it "helps".

Should he get acupuncture? ~ I know Anne said it really helped Ella. I have thought about trying it with one of mine.

At what age should we test Atlas for SM? ~ I would wait until 3 unless he is showing symptoms. Like Karlin said if you MRI him it is likely eventually most Cavalier with get SM but not all are affected by it.

goda
3rd June 2011, 01:10 AM
Luka’s medication regiment is helping, he is however still having sporadic SM episodes? ~ I have 1 with sever CM/SM, 1 with moderate CM/SM & 1 is sever CM. You have to really try to find the best possible dosage with the medication. But it is unlikely the symptoms will go away completely. All of mine have "flare ups". They have good days & bad days. There is not really a "cure" for SM. Just management for the pain. Had a good long talk with our neuro again the other day about this. Really you are just trying to keep them as comfortable as possible. I noticed weather changes tend to set my 3 off... But all of them still scratch.

Luka’s sensory function is not impaired is the SM due to the medullary kink? ~ From my understanding the SM is an inherited condition in the breed. That is why it is so important that the parents be MRI scanned. They syrinx or cyst are believed to form because the skull is too small for the brain. This causes the brain to herniate into the spinal cord. Redusing the flow of spinal fluid. So I guess the kink would reduced fluid flow and contribute to the SM. But other small breed dogs tend to have the kink as well but they don't have SM. My youngest was diagnosed at 6 months with sever CM but NOT SM YET... and he had a very sever kink in the medulla.

Can the medullary kink be corrected? ~ No there is no way to "fix" it. Surgery may help to relieve pressure on the brain so it might reduce some of the pressure on it.

Is Luka a surgical candidate? My Neuro tells me the younger dogs have a better change because the longer the SM progresses the greater risk of permanent damage.

What is the cost of surgery? I was quoted $3000 - $5000

What are the dangers of surgery? This surgery is high risk. Do a LOT of research on it! I'm still in limbo with my 3. Remember it is a good 8-12 weeks of COMPLETE cage rest. NO excitement. There are no guarantees the surgery will be successful. Or how long it will be successful for. Some dogs go on to develop scar tissue within a year of surgery. There symptoms return the same or even worse then before surgery. While other dogs do wonderful after surgery and live a happy pain free (or nearly pain free) life.

If surgery is an option, will Luka have to continue his medication regiment due to the 3 lumbar dialations? ~ A large # of the people I have talked to say there dogs still need medication after surgery. Each dog & each surgery is different.

What level of activity should he stay in? ~ Whatever he is comfortable at. I try to treat my dogs as if they were "normal" and keep them moderately active. At first I TRIED to restrict my dogs.. but the youngest was 6 months at diagnosis. You can't restrict a puppy from play. So I try to make judgements for the moment. If they are having a good day then we spend it outside.. if they are having a bad day we stay inside. The 2 that are the worst like to play fetch, tug of war, playfully chase chickens, take walks..etc. I do try to keep our activities around the house. NONE of my dogs can stand a collar so I have to use a harness. Even then they can only stand it for short periods of time. I have found that outings.. such as dog walks & parks really set them into a flare later that night & the next day. I don't think it's so much the excitement as it is the harness putting pressure on them. So I tend to stay home with them. We live on several acres of fenced in land so they still get lots of excitement without going for long walks.

What is an ideal weight for him? Each Cavalier is different. You want to watch there weight especially because of MVD.

Would adding fish oil to his diet help with inflammation? ! Mine have always gotten Fish Oil, not sure if it "helps".

Should he get acupuncture? ~ I know Anne said it really helped Ella. I have thought about trying it with one of mine.

At what age should we test Atlas for SM? ~ I would wait until 3 unless he is showing symptoms. Like Karlin said if you MRI him it is likely eventually most Cavalier with get SM but not all are affected by it.

Thanks for your feedback! I hope I am not forgetting anything. I just want to be the best advocate Luka has. Every time he has one of those pain episodes, I don't know what else to call them "attacks" my heart breaks.

It really helps reading what other people have gone through. What their experience has been etc.

anniemac
3rd June 2011, 02:44 AM
Geez shannon (reptigirl). Good information! I just want to say something about acupuncture. Ella's neurologist did it at a huge discount (almost always free). I shouldn't openly say that but it does play a part in why she got it done. I did see a difference and I think I have videos posted on her blog (www.fightforella.blogspot.com) but would I pay for it, I'm not sure. I did notice the last time it didn't help her as much. Other people have said it helps but I want to stress with pain management. I would definately put money towards medication and not acupuncture if that was the choice.

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Reptigirl
3rd June 2011, 04:26 AM
Geez shannon (reptigirl). Good information! I just want to say something about acupuncture. Ella's neurologist did it at a huge discount (almost always free). I shouldn't openly say that but it does play a part in why she got it done. I did see a difference and I think I have videos posted on her blog (www.fightforella.blogspot.com (http://www.fightforella.blogspot.com)) but would I pay for it, I'm not sure. I did notice the last time it didn't help her as much. Other people have said it helps but I want to stress with pain management. I would definately put money towards medication and not acupuncture if that was the choice.

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How often was the acupuncture done? Just wondering.. Because Blitz & Flash can be GREAT for days... even a week or more... but when a "flare" hits it really bothers me to see them and not be able to do anything MORE then there regular meds... I'm wondering if it would help... Sometimes the "flare" can go on for a few days... others its just a few hours... Our neuro is skeptical about adding on any other medications because of side effects :confused: So I'm looking for something that could be a temporary fix... Know what I mean? Not sure if our insurance would cover it... probably not... but it would make me feel less stressed about there "flares". How on earth do you go about finding someone to do acupuncture on dogs?

Kate H
3rd June 2011, 12:17 PM
Reptigirl wrote: Blitz & Flash can be GREAT for days... even a week or more... but when a "flare" hits it really bothers me to see them and not be able to do anything MORE then there regular meds

Dogs with SM can be affected by changes in air pressure, especially very high or very low pressure, which may be behind Blitz and Flash's bad days. Oliver is normally just on gabapentin and frusomide and doing OK, but if he's in extra-strong sunlight he can get a headache, so my vet (after consultation with Oliver's neurologist) has given me a small amount of liquid Metacam for use in emergencies. He doesn't need to take it regularly, but it's helpful to have something to zap pain quickly in an emergency. Might be worth discussing with your vet?

Kate, Oliver and Aled

Blondiemonster
3rd June 2011, 04:01 PM
Titanium mesh at livs costs around 6 thousand dollars. Thats the only xtra info i have thats useful :)

Karlin
3rd June 2011, 08:23 PM
Just a correction here -- the surgery is not considered high risk, but it is brain/skull surgery done in a very sensitive area and can have problems such as scar tissue formation over time afterwards and is not a cure -- it just halts progression. In at least around half of dogs, some symptoms return. That said, they do not generally seem to return to as bad a state as before the surgery. The morbidity rate is very low. A tiny number of dogs have problems right after. Some statistics are noted in Clare Rusbridge's FAQ.

Anyone releasing dogs from this surgery in less than three days should be viewed with scepticism IMHO. Many neuros keep them in 1-2 weeks or longer. The average seems about 10 days-two weeks. Younger dogs probably do better for the reasons Shannon noted but many dogs will not develop symptomatic syrinxes til older so there'd not really be a reason to consider surgery until then, IMHo but also I do think most neurologists also feel this way.

I personally would never bother with the worry or expense of MRIing a dog with no symptoms no matter the age, except for research.


The scratching is a motor neuron response not a sensory neuron response.

Don't know the semantics of the difference -- all I was saying is what I noted already: he has all the typical signs of damage in the areas that are affected by SM. These tend to be motor function and various pain responses (the twisting to one side, the leg thumping without scratching anything, the attempt to scratch). It is very hard for neurologists to pinpoint exactly what is going on even from an MRI with this condition. I don't know if 'sensory neurons' are affected by SM as I have never heard a discussion of that context at any of the international symposia (nor from Clare Rusbridge). Or what the difference would be...? Pain is the main issue for these dogs and the motor problems/scratching,leg chewing/face rubbing/scoliosis etc are caused by pain and discomfort.

Unfortunately, vary little is understood about this condition in either humans or dogs. One of the leading human experts internationally attended one of the SM dog symposia I was at, and noted he'd spent his entire career trying to understand it and it remained an enigma after 40 years. So I don't think anyone can give any definite answers about what is being affected and why, best course of treatment etc. For all of us, and the neurologists, a lot of guesswork and crossed fingers are involved.

Blondiemonster
3rd June 2011, 09:15 PM
Thanks for clarifying that. I was wondering aboit that myself! When i think of putting a pretty happy girl through surgery as a preventative measure ( because of particularly bad scan) i was wondering about mortality rate as well as things getting worse. The crate rest would be a serious problem for us. Blindie hasnever been crated and hates being restraint in amy way with an undying passion. She made that clear to us when she was a few weeks old. She was impossible to crate train. (barked and yelped 2 weeks non stop till the neighbour from across the street and building next door (in nyc!!) where threatening to report. It simply breaks her heart. That is something i have to take into consideration.

anniemac
4th June 2011, 04:51 AM
How often was the acupuncture done? Just wondering.. Because Blitz & Flash can be GREAT for days... even a week or more... but when a "flare" hits it really bothers me to see them and not be able to do anything MORE then there regular meds... I'm wondering if it would help... Sometimes the "flare" can go on for a few days... others its just a few hours... Our neuro is skeptical about adding on any other medications because of side effects :confused: So I'm looking for something that could be a temporary fix... Know what I mean? Not sure if our insurance would cover it... probably not... but it would make me feel less stressed about there "flares". How on earth do you go about finding someone to do acupuncture on dogs?

I would start to ask holistic vets. Even call acupuncture places for people. They may know.

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