PDA

View Full Version : Suspect SM



Teri
20th June 2008, 01:40 AM
Hi, I'm so happy to find this board, and especially this forum for SM and MVD. I am hoping you can give me some guidance.

We have suspected that my girl Sadie (almost 5 yrs old now) has SM. She does the bunny hop and air scratching when she walks, she scratches her neck/ear area, she's slowed down and sleeps more, she needs steps to get up to the couch because she won't jump up anymore, she won't jump off anything, and we have to pick her up in just the right place so she doesn't yelp, and she sometimes looks like she has a headache. These have all been mild and variable symptoms where they only show up once in awhile since she was two. But lately they have increased in frequency and she also started getting a head tilt (we noticed it just a couple weeks ago after we watched a video of her we had just taken) and she is getting some curvature of her spine at times. We are worried she might be in pain and want to do more to help her.

We took her to our regular vet and she agreed that it sounds like it could be SM and getting worse. She took her through a bunch of exercises and she did pretty well on most of them, she didn't think she had any weakness in her legs for example. But she started her on Metacam and said if that doesn't do anything in two weeks, she'll try furosemide next, and then if that doesn't work she'll refer us to a neurologist and to think about doing an MRI to know for sure what we're dealing with. I am leaning towards doing an MRI sooner rather than later instead of trying this or that and not really knowing what we're dealing with and possibly causing more harm. What are your thoughts on this? Also, for an MRI can we just find any neuro to do the MRI or do we need a neuro who is experienced with SM? I know I'd want to get a very experienced neuro who has experience in SM if she needs surgery, but is that also important for doing an MRI? I'm in the state of Washington (USA) so any recommendations for neuros in the west or for our next steps would be most welcome. We are feeling a bit overwhelmed at the moment and want to do the best for our little sweet girl.

Thanks so much!

Teri

Love my Cavaliers
20th June 2008, 05:24 AM
I feel your pain and confusion so acutely. My 5 yr old, Riley, was just diagnosed with an advanced and very severe case of SM, even though her symptoms were mild. She had an adorable little head tilt, some loss of balance - especially when she shook, she would fall over, she was not the best jumper, ands he stated having what I thought were mild (10-15 second) seizures. She still ran and played, but hated going for walks. I would get the leash out and she would run and hide. No scratching though, no bunny hopping, no obvious pain. And she had all of these symptoms since we got her at 11 months old. Nonetheless, I finally decided to have a neuro exam to make sure nothing progressive was going on. Unfortunately, the results of the MRI were not good and she had decompression surgery last week. Doing pretty well so far, but not back to her normal self yet. I would encourage you to do the MRI as soon as you can if you can afford it. Sadie's symptoms are too suspicious for SM. I live in the Chicago area so I can't help you with an experienced neuro vet. I went to a neurosurgeon at the veterinary specialty center near me, had the MRI and then took the MRI disc to another veterinary neurosurgeon. He agreed completely with the first vet's diagnosis and even admitted that since Riley's case was complicated, the first dr was the better one to do the surgery. He had done more of them and took on the more complicated and challenging cases in the area. So far, I have been pleased, but it is only 9 days since her surgery. She is on crate rest or can be held in my arms (guess which one I choose to do!). Good luck. Please have an MRI if only for your peace of mind.

Bridam
20th June 2008, 06:20 AM
I share your pain and we've been down this road as you would find in our thread about Madison. The only advice I can offer is that which was given to me when I was in your position: see a neurologist; here's a list of people in your state from sm.cavaliertalk.com

Sanders, Sean G. Lynnwood, WA
Bagley, Rodney S. Pullman, WA
Harrington, Michael L. Tacoma, WA

Also, isn't there someone at Berkley with a lot of experience with this? Maybe that's doable for you. Our thoughts are with you. Please keep us posted.

Teri
20th June 2008, 07:44 AM
Thank you both so much for your support and information. I just finished reading up on the threads about both Riley and Madison and all that you both have been through with them. I hope they continue to do well, I will be thinking of them and you. Please keep us updated on their progress.

Dr. Harrington was the most well known neuro in this area who had experience with SM, however according to his website he has left the area for Utah. I'm not sure if he's still doing the same things there that he did here though. Do we need an SM experienced neuro for the MRI? Does anyone know? I told my husband the other day that if Sadie ends up needing surgery we may need to pack up and drive to New York to see Dr Marino or Dr Dewey! Needless to say, we hope she won't need surgery. But agree with you that we need to find a good neuro and get an MRI.

Thank you both again for your thoughts and support. It really means a lot to me to hear from you and not feel so alone in this journey we're embarking on. Take care and I will be thinking good thoughts for both Riley and Madison and your families.

Karlin
20th June 2008, 10:54 AM
I'm so sorry to hear about Sadie. :flwr:

I'd definitely see a neurologist as fast as you possibly can.

This sounds like a fairly progressed case given those symptoms (bunny hopping and air scratching appear for no other condition that I now of, and if you look at Dr Rusbridge's pain scale for evaluating dogs with SM, these would not be considered mild symptoms but severe symptoms -- once a dog is yelping in pain on touch and having problems with movement and jumping onto things, that's the highest pain grade on the neurologists' scale below). Much could be done simply to relieve the pain your dog is experiencing. I'd ask your vet to try gabapentin if metacam isn't doing much -- it probably is not, as she sounds very pain sensitive now.

Pain scale: http://sm.cavaliertalk.com/painscore.pdf

It is a problem for diagnosis sometimes that vets often interpret scratching as 'mild' pain -- neurologists say it is evidence of serious damage to the dorsal horn area in the spine, and the nerve endings there. Likewise vets do not have the ability to evaluate effectively for limb weakness -- I know of people who have had vets say there's little problem whereas neurologists immediately pick up deterioration. This isn't to blame vets but to remind that they are GPs whereas neurologists are specialists with the training to evaluate for a neurological condition like SM. Because the condition remains relatively rare, vets often go for the more obvious diagnosis and are slow to refer someone on to a specialist but really for this condition even a week can make critical difference depending on the level of progression. Most neurologsts, if they feel a dog needs surgery, will rush to do it right away, as passing time -- even a few weeks -- means more potentially permanent damage.

You can manage the pain with medications up to a point but sometimes only for a period of time. No medication will cure or halt the progression of the condition. You will almost certainly want to get an MRI especially if you are considering surgery.

Dr Bagley is familiar with SM:

Dr. Rodney S. Bagley
Department of Veterinary Clinical Sciences
Washington State University
100 Grimes Way
Pullman, WA 99164
Tel: 509-335-6060; 509-335-0711
E-mail: bagley@vetmed.wsu.edu
www.vetmed.wsu.edu

LIVS (Dr Marino et al) do one form of surgery but many do the basic decompression with good success. Very little so far is known about the medium to long term success of the surgery LIVS do -- they only have been following dogs for just over a year now, so keep that in mind. There are a couple of others doing the same LIVS-style surgery in the US and one in the UK now. It is a more invasive process though requiring sinking screws into the skull, which some may not feel comfortable about -- so do research carefully on what you think is best for your cavalier. Surgery of whatever type isn't a cure though, unfortunately, and results are variable. But for most dogs it does halt progression and for some definitely give extra lifespan than they'd otherwise have had.

Be sure to let Sadie's breeder know she is having these symptoms. This is extremely important for breeders to know as it has serious implications for their breeding programmes and they will not want to risk producing other puppies with the condition in their lines.

Cathy T
20th June 2008, 05:29 PM
Sorry to hear you suspect SM in Sadie....but glad you are being proactive and have come here for guidance and information.

Bridam
20th June 2008, 05:49 PM
Do we need an SM experienced neuro for the MRI? Does anyone know? .


I don't think so. I think you can find out what the specific protocols are for performing the correct MRI and anyone can do it. You'll get some kind of summary from the MRI place but you'll then send your results to the neurologist with experience. That's what happened in our case.

This may actually be an opportunity to save a little money. I think we got the MRI for under 1500 in Dallas but it would have cost us closer to 2000 if we had gotten it from dr. abramson's place in Houston.

And, if you are serious about traveling for care. I can only say wonderful things about Dr. Abramson in Houston and her variation of doing both decompression (I think she said that she removes more dura matter than most) and a shunt. So far so good, fingers crossed.

Teri
20th June 2008, 11:08 PM
Thank you so much for all of the information you provided as well as your opinions. One thing I may not have made clear about Sadie's symptoms is that the scratching and bunny hopping are worse (several times a day now) plus new signs now of scoliosis and head tilt and she won't jump up (never would jump down since we got her at age two so got her stairs to use for the couch). What isn't worse is she isn't yelping in pain when picking up, unless we pick her up under her front legs or around her middle. But we've been picking her up front and back, and keeping most of her weight in back without any yelping and so that hasn't gotten worse. But she will still yelp if we accidentally pick her up in the wrong spot, so we've been conditioned not to do that.

Anyway, I have a call into my regular vet and hope to hear from her tonight about getting a referral for the MRI. Dr Sean Sanders has a place in Kirkland now and does MRIs which is only 1.5 hrs away. Dr Bagley, who is more familiar with SM, is 6.5 hours away but less expensive than Dr Sanders. Add in gas prices and one or two nights of lodging, and it could be equal in cost. So we're thinking about maybe doing the MRI in Kirkland since we wouldn't need to stay overnight and she could be back home sooner with less traveling. Unless its important that the MRI be done by someone more familiar with SM? We're willing to go to either place actually. I assume it would be just an out-patient procedure where she'd be able to go home in a few hours? Thoughts on whether one place is more favorable for the MRI?

My vet is hesitant to prescribe gabapentin without a neuro consult or MRI. Our breeder is aware of the possible SM diagnosis and has been very supportive. What started this query was because we started seeing new signs so we visited our breeder so she could see her. Since she hadn't seen Sadie in awhile, we knew she would be able to see whether she seems worse or not. She was the one who said we needed to get going on some treatment with gabapentin, but my vet wasn't comfortable with starting her out on that. After doing research and hearing other stories, we'd rather just get the MRI done asap so we know exactly what we're facing and get a treatment plan from an neuro.

If Sadie needs surgery, how do we find out which neurosurgeons have the best success rate? I have heard of some where they have a very small success rate, and others who have had a very high success rate. Is there a listing somewhere? I'd rather travel a bit and have a successful outcome.

Karlin, you mentioned something about different forms of surgery. I assumed they were all about the same for SM, so obviously I need to learn more. What are the various surgeries out there that we'll need to choose from? And which ones show the most promise?

Thank you all so much for listening and being here for us. I just can't thank you enough!!

-Teri
Mom to Joey (5 yrs old) and Sadie (4.5 yrs old)

frecklesmom
20th June 2008, 11:24 PM
I know little but this is a good site to visit

http://www.cavalierhealth.org/syringomyelia.htm

Thoughts of you in the upcoming days :xfngr:

Bridam
20th June 2008, 11:25 PM
They do need to sedate them for the MRI--in our experience, we dropped her off first thing in the morning and they wanted to watch her until the afternoon to make sure she was doing okay.

Surgeries:
(1) decompression
(2) shunt
(3) decompression w/ titanium mesh

http://www.sm.cavaliertalk.com/treating/treating/surgery.html

Karlin
20th June 2008, 11:28 PM
I am going to be blunt because I think you do need to see a specialist immediately: she has almost every serious symptom for this condition excepting screaming sessions and to be honest I would say she would not even need an MRI for diagnosis -- but will need one if you wish to consider surgery and I'd definitely have one so you know what you are dealing with. I cannot stress enough that these are all very severe symptoms and that she could go into very serious pain at any time. If she is showing less pain it will be because her body is actually deforming (the scoliosis) from pain to remove pressure on the syrinxes in her neck. She urgently needs proper medication and to see a neurologist for the condition so that you can make the best and most informed decision on what to do next. I would not lift her at all unless absolutely necessary and raise her food and water dishes.

To be honest: I would consider calling the neurologist I would want to do surgery, and explain all the symptoms as I think they will say this is fairly urgent, and see if you can bring her on the assumption that she may need to stay on for immediate surgery. If you are not considering surgery, then either neurologist would be fine as you'd be using medication for pain care primarily for as long as that will work. But I'd only go to a neurologist familiar with the condition. If Bagley is far away, and that is who you want to go to, I'd be talking to him and making arrangements to potentially go to him for the surgery rather than bring her back and take her again.

Please let us know how things go.

Karlin
20th June 2008, 11:36 PM
Also: I have not heard of any specific neuros having better success than others but I am sure that may be the case. Some are more experienced than others; I'd trust anyone who has done many surgeries. I live in Ireland so don't really know much about the US neurologists though Harrington has been recommended by people I know. The success rate is good short term (80% of dogs improve) but a lot of dogs have a recurrence (25%) and some do well for couple of years then start to decline. The LIVS surgery has not been done long enough to track longer term results, which are the crucial results. They have good initial results.

The surgery is not a cure, it simply halts progression.

There's very little clinical information on the surgeries. Most published work is by Dr dewey/Marino and Clare Rusbridge.

I'd be looking for an experienced neurologist who can do this asap if you are thinking surgery. Would your vet not at least consider giving her steroids to try and ease the scoliosis etc?

Love my Cavaliers
20th June 2008, 11:42 PM
Teri,

A consideration for choosing which facility to go to for the MRI would be whether they have the capability to care for Sadie overnight if necessary. Riley had a bad reaction either to the anesthesia or to the procedure itself. She woke up fairly quickly but had severe balance problems and nystagmus (erratic eye movements) and they decided to keep her overnight. The neuro thought she could have had some fluid shifts that caused the imbalance. They kept her quiet with some valium and IV fluids. When she came home the next day, she was back to her normal self. She had surgery 2 weeks later. I don't know if others have had this problem after the MRI or if Riley was unusual. My puppy, Oz at 11 months came through with flying colors and you could not tell that he had been sedated. Riley's surgery was a little different than just decompression. her surgeon has sarted using titatium implants - he feels that it reduces the chance of scar tissue forming post-operatively, hopfully eliminating the need for another surgery. Hope some of this info helps. Good luck.
Bev :xfngr:

Karlin
20th June 2008, 11:53 PM
A good point on the MRI, though a reaction is pretty rare I think. The titanium implant is the LIVS surgery; I know a few others are now doing this too; it is more complicated than the regular decompression.

Clare Rusbridge's info on the basic decompression surgery: http://sm.cavaliertalk.com/treating/treating/surgery.html

Teri
21st June 2008, 12:28 AM
Would your vet not at least consider giving her steroids to try and ease the scoliosis etc?

My vet has said she would try furosemide next and if that doesn't help, then she'd want to refer us to a neurologist. She doesn't feel comfortable starting her on steriods without a neuro consult or MRI. When she said that, my husband and I decided we didn't want to mess around anymore since we aren't seeming much improvement with the Metacam, so started this search on where to get an MRI, etc. I am hoping our vet will give us a referral, as I think that is what we need to see a specialist sooner, is that right?

Do you know if Dr Harrington moved his regular practice and surgery to Utah, or is he doing something else? His website didn't say anything about coming to see him in his new location. He is the most experienced I have heard in this area so might be willing to go to Utah for the surgery if he is still doing this, as he was our first choice before he heard he moved. Or do you know of any neuro surgeons of Harrington's caliber in the western part of the US?

Thanks for all the information and support. Yes, we are trying to get the MRI done right away and know we may need to do surgery too which is why I'm asking so many questions about it. Surgery is a big deal to me though, so I just want her to have a SM-experienced surgeon and will travel a bit to get her to one. And good point about overnight care. We will be sure they offer that service as well.

Thanks all!

Cathy Moon
21st June 2008, 01:33 AM
Do you know if Dr Harrington moved his regular practice and surgery to Utah, or is he doing something else? His website didn't say anything about coming to see him in his new location. He is the most experienced I have heard in this area so might be willing to go to Utah for the surgery if he is still doing this, as he was our first choice before he heard he moved. Or do you know of any neuro surgeons of Harrington's caliber in the western part of the US?

Thanks for all the information and support. Yes, we are trying to get the MRI done right away and know we may need to do surgery too which is why I'm asking so many questions about it. Surgery is a big deal to me though, so I just want her to have a SM-experienced surgeon and will travel a bit to get her to one. And good point about overnight care. We will be sure they offer that service as well.

Thanks all!
There is a way to contact Dr. Harrington on his website, or you could email the Utah Pet Center from their website. That's how I contacted Charlie's neurologist here in Ohio. I received a phone call within just a few hours of emailing. Best wishes to you! :flwr:

Karlin
21st June 2008, 11:43 AM
If it helps your decision on what to do, I don't know (or believe) that Dr Harrington is any better or different to Dr Bagley or others in that region. I am going on only ONE person who has been to him, so really -- it isn't worth making a major effortto track down a single neurologist based on that, I think. Also Dr Bagley has a very good name as well. There are good neurologists in almost every state and the list of neuros on cavalierhealth.org lists Dr Bagley as having SM experience. It doesn't mean at all that others in the state do not -- it only means that someone has told Rod Russell, who manages that site, that this neurologist has seen at least one dog with SM. All the others listed may well have also treated many dogs with SM,but no one has reported this to the one person running a single website, so it is really a fairly tentative listing meant to give some basic help, not a definitive list of experience by any means. ie: That is only a minimal starting point -- I'd want to know directly from the neurologist, more about their practice and approach.

A better approach is to call the neurologist's office and talk directly to them about how many surgeries the doctor has performed, what aproach is taken to the surgery, etc.

In your place, I would be looking for the closest neurologist with experience, I definitely wouldn't drive many states away to see someone. Keep in mind that if you do the surgery the dog will need to be there for usually, a week or two, and it will not be very comfortable for the dog to be driven back post surgery for a long distance. This is a major surgery in which a piece of the skull is removed and the dog must be totally confined crated) for weeks afterwards. All those elements would go into any decision for me.

PS With all due respect to your very cautious vet, I'd consider seeing another vet willing to help ease Sadie's discomfort especially for such a clear symptom of severe pain as scoliosis (this is when the dog begins to permanently shape its body and spine in a way to avoid the pain of the syrinx -- it is the spinal equivalent of a limp -- the dog is twisting its neck awkwardly into a position that causes the least pain to it). Giving steroids short term is a common practice for all sorts of far more minor pain situations so it just seems odd not to do more for dog with such clinical signs.

This is Clare's description of clinical signs, written for vets and pet owners:


CLINICAL SIGNS
The most important and consistent clinical sign of CM/SM is pain however this may be difficult to localise. Owners may describe postural pain; for example, affected dogs may suddenly scream and/or lie with the head on the ground between the paws after jumping up or during excitement. It is also common to sleep with the head in unusual positions, for example elevated. Discomfort often appears worse in the evening and early morning or when excited and can be associated with defecation or may vary with weather conditions. Pain is positively correlated with syrinx width and symmetry (Fig 2); i.e. dogs with a wider asymmetrical syrinx are more likely to experience discomfort, and dogs with a narrow syrinx may be asymptomatic, especially if the syrinx is symmetrical. Dogs with a wide syrinx may also scratch, typically on one side only, while the dog is walking and often without making skin contact, such behaviour is often referred to as an “air guitar” or “phantom” scratching. Dogs with a wide syrinx are also more likely to have scoliosis. In many cases the scoliosis slowly resolves despite persistence of the syrinx.

SM may result in other neurological deficits such as thoracic limb weakness and muscle atrophy (due to ventral horn cell damage) and pelvic limb ataxia and weakness (due to white matter damage or involvement of the lumbar spinal cord by the syrinx). Seizures, facial nerve paralysis and deafness may also be seen; however, no direct relationship has been proven and this association may be circumstantial.

Bridam
21st June 2008, 06:35 PM
If it helps your decision on what to do, I don't know (or believe) that Dr Harrington is any better or different to Dr Bagley or others in that region. I am going on only ONE person who has been to him, so really -- it isn't worth making a major effortto track down a single neurologist based on that, I think. Also Dr Bagley has a very good name as well. There are good neurologists in almost every state and the list of neuros on cavalierhealth.org lists Dr Bagley as having SM experience. It doesn't mean at all that others in the state do not -- it only means that someone has told Rod Russell, who manages that site, that this neurologist has seen at least one dog with SM. All the others listed may well have also treated many dogs with SM,but no one has reported this to the one person running a single website, so it is really a fairly tentative listing meant to give some basic help, not a definitive list of experience by any means. ie: That is only a minimal starting point -- I'd want to know directly from the neurologist, more about their practice and approach.

A better approach is to call the neurologist's office and talk directly to them about how many surgeries the doctor has performed, what aproach is taken to the surgery, etc.

In your place, I would be looking for the closest neurologist with experience, I definitely wouldn't drive many states away to see someone. Keep in mind that if you do the surgery the dog will need to be there for usually, a week or two, and it will not be very comfortable for the dog to be driven back post surgery for a long distance. This is a major surgery in which a piece of the skull is removed and the dog must be totally confined crated) for weeks afterwards. All those elements would go into any decision for me.

PS With all due respect to your very cautious vet, I'd consider seeing another vet willing to help ease Sadie's discomfort especially for such a clear symptom of severe pain as scoliosis (this is when the dog begins to permanently shape its body and spine in a way to avoid the pain of the syrinx -- it is the spinal equivalent of a limp -- the dog is twisting its neck awkwardly into a position that causes the least pain to it). Giving steroids short term is a common practice for all sorts of far more minor pain situations so it just seems odd not to do more for dog with such clinical signs.

This is Clare's description of clinical signs, written for vets and pet owners:

I totally agree with starting meds as soon as possible. There doesn't seem to be a point in waiting. We made that mistake relying on our vet before finding this forum. But, would the steroids afftect the way the mri would look by relieving a little pressure?

Karlin
21st June 2008, 06:41 PM
Steroids wouldn't alter the syrinxes, as far as I know. I've never heard of any neurologist having problems with getting a dog onto medication prior to an MRI -- I think they'd generally view the dog's comfort as more important than any minor changes that might be caused with an MRI. :) I believe many neurologists do surgeries on dogs many months after an MRI anyway -- I don't think the MRI matters that much to the surgery except to show the existence and extent of SM. There is however some indication that information from cine-MRIs, which capture actual CSF flow, could eventually be used to determine what small changes within the surgical procedure might benefit a given dog. This has been the case in some human surgeries for Chiari and SM that I read about.

Bridam
30th June 2008, 01:56 AM
Update?

Teri
7th July 2008, 12:30 AM
Hi everyone, thank you so much for all your information and insight. Sorry about not giving an update sooner, we've had some other things going on and I haven't been online very much.

We made an appointment with the closer neuro for a consultation. He won't do an MRI without it, and so we're scheduled for Monday the 14th. He was booked solid until then. In the meantime, our vet put Sadie on Furosemide and I am actually seeing an improvement! She seems happier and more alert and energetic. It's amazing the difference it has made. She's always been a happy girl, spinning in the air and dancing when she knows its dinnertime for example, but now she seems more joyful and for more than just a few moments - now for most of the day. I am very surprised it has made a difference. I am now wondering if we should take her off it just before her appointment so he can see her 'natural' state? I hate to make her worse again, but does he really need to see the symptoms himself or can he just take my word for it what her symptoms have been? I may give his office a call tomorrow when they open to see what they recommend. During the consult I will be checking out his credentials for SM surgery in case she needs that. Dr Bagley trained him so maybe he'll be okay. If not, we'll go to Dr Bagley across the state.

Anyway, I'll keep you posted on the consultation on the 14th! Thank you so much for all your suggestions and support!

Karlin
7th July 2008, 12:03 PM
Thanks for the update -- I am so glad the furosemide is helping. I've never heard of a neurologist wanting to remove a dog from something that is relieving pain in order to see how the dog is doing so I wouldn't worry about it but check with his office if you want to make sure. A neurologist will be able to test all the things in a consult that indicate the seriousness of SM -- things that will not be much affected by frusemide. But s/he will also rely on your description of symptoms. I would write down all you have seen, frequency of scratching, etc so you have that to hand.

The neurologist is doing exactly the right thing :) -- they will always do a consult and physical exam before the refer for an MRI (just like human doctors). They wouldn't schedule an MRI without being sure that you need one. :thmbsup:

I'd consider asking the neurologist for a recommendation for your vet for the point at which a dog should be referred to a specialist. I am concerned that your vet thought it would be better to try and treat with something like furosemide and only if that *didn't* work, to refer to a neurologist. The reality is that this condition should *always* be immediately referred to a neurologist unless the owner is firm in only wanting to give some short term pain relief before putting the dog to sleep. Finding a correct and effective medical palliative approach absolutely *requires* a neurologist; likewise only a neurologist can give a prognosis and possible recommendation for surgery. The earlier the condition is treated in any form, the better a chance at a decent life for the dog, and the less suffering the dog will endure. With many dogs, even weeks or days can make the difference between permanently crippling damage and avoiding it by surgery, for example -- or between life and death if the damage has gone too far. Vets need to clearly understand how very serious this condition is, and how urgent it is for owners to get their dogs to a specialist when the vet can find no other reason for SM-like symptoms. Certain symptoms -- scoliosis and air-scratching in particular -- are unlikely to be due to any other cause except SM in cavaliers.

Let us know how the consult goes.

Teri
8th July 2008, 05:09 PM
Thank you for the support. It means a lot to me. And you were right of course. I called the neuro's office and they confirmed that I should just keep her on her meds for the consult, so I'm happy about that. And yes, I plan to share with my vet what I've learned from the neuro (and you guys!) since she admitted to me from the start that while she knows clinically what SM is, she's never seen it herself before nor has she ever treated it. She is interested in learning more about it and will be talking with the neuro after the consult.

Another thing I am concerned about is that when Sadie is in public, she won't show any signs. I tried to get her to scratch for the vet by walking and also by touching her neck, nothing. Her back was straight, she didn't scratch, she wouldn't present any symptoms. The vet checked her strength in each leg and she passed with flying colors. So I hope she shows a few more signs for the neuro!

I'll keep you guys posted after the consultation on Monday! Thanks again for all your support!

Karlin
8th July 2008, 05:15 PM
That's all good news. :)

It is a specialist condition so vets should not be expected to even recognise it -- it is smart of your vet to have even suspected :). But at the same time, a vet should immediately talk to a specialist on a condition like this, not try to treat minimally and see what happens. With a neurological condition like this, the best chance for the dog is spotting this early when there are the most options and least amount of permanent damage. Clare Rusbridge provides some good background info (that I have available as downloads, with Clare's permission, on www.smcavalier.com).

A neurologist can do the same tests as a vet and spot problems right away. It's like the difference between a cardiologist and a vet listening to a heart. A cardio has specific focused training to spot heart problems and know exactly what the problem is and can easily hear grade 1 early murmurs. About half of vets will not pick up a murmur at all until it is in the middle grades.

Teri
16th July 2008, 02:21 AM
Yesterday we took Sadie in to the neurologist and it well. She, of course, didn't show any symptoms that we regularly see at home no matter what we did that normally gets a reaction, so to him she looked perfectly normal. She's also been having much better days since being on the furosemide. He did all kinds of tests on her and every one of them was 'normal'. So he was happy to see that. But based on her symptoms that we reported to him, he strongly suspects "COMS (Caudal Occipital Malformation Syndrome)". I hadn't heard of it referred to as that but he wrote it down for me. He is also in contact with Drs Dewey and Marino and they are all on a listserv together with other neurologists where they talk about these things, what works, what doesn't, etc.

Anyway, he didn't push us into getting an MRI. Said that on a scale of 1-10 he thought she was about a 2 so it wasn't imperitive that she have an MRI immediately unless we wanted to know. Well, we do want to know so she's scheduled for an MRI this Thursday. Once she has the MRI then he will prescribe the best treatment for her based on the findings. We will talk to him that same day to get the results and the treatment plan so we should be well informed by then.

I'll keep you guys updated after Thursday! Wish us luck!

brotymo
16th July 2008, 05:15 AM
I will be pulling for the best of outcomes for your Sadie. She is lucky to have such a consciencious owner.

Karlin
16th July 2008, 03:43 PM
I'm glad you had a good meeting and I am sure you will feel more comfortable having had an MRI so you know what is going on. :flwr:

The neurologists attending the London SM conference actually voted to discontinue use of the term COMS because it is inaccurate in a number of ways -- this included Dr Marino -- but many (including Dr Marino) do seem to continue to use this term. US neuros use it more than others probably because the term was used by Drs Marino and Dewey in several papers on the subject and not that much has been written overall.

Minutes from the meeting:


Occipital hypoplasia and Caudal occipital Malformation Syndrome (COMS) -
These terms were rejected because there is no proof yet that the condition is related to
either a malformed or hypoplastic occipital bone(s). Current evidence suggests that
there may be other significant factors in the pathogenesis. In addition these terms can
be confusing as for example the term COMS may imply the malformation only or the
malformation and syringomyelia.

You can read more on the meeting here:

http://sm.cavaliertalk.com/research/london/london/minutes.html

Teri
18th July 2008, 06:07 AM
Sadie's MRI appointment was first thing in the morning today, no food after 10pm last night, water was okay. She was a little grumbly when we left the house because we "forgot" to feed her breakfast. :) We got her there at 8am, made sure she was first on their schedule (they give priority to people who are out of town), signed the papers, made the payment and then headed out. We were told to expect her to be ready to go home around 1pm.

Around 11am the doctor called and said they finished the MRI and he's reviewed the scans. He said it is an extremely severe case of COMS and she also has hydrocephalus. She has a really large syrinx which has left only 5-10% of the normal spinal tissue present. He was surprised that she was so bad when she didn't present any symptoms to him and mild symptoms to us. He's seen and heard of it before of course but he says it never ceases to surprise him whenever it happens and he finds it very frustrating. He said that if he had seen the scan before he met her he would have assumed she wasn't mobile.

Basically we have two options, medications and/or surgery. We will be starting her on the recommended meds in the next day or two and see how she does. We need to get the meds set up at our local pharmacy, one needs to be compounded which is why the delay. In the meantime she will continue on her current meds. He recommends Omeprazole 0.5 mg/kg once a day to reduce CSF production, and gabapentin 15-20mg/kg every 12-8 hrs to help control abnormal sensations. She may also need to be on prednisone but we'll try this first. We arrived back at the clinic to pick her up and they gave us a three page printout of the results, including her scan where they inserted labels of what we were looking at. They also recommended that she not go for long walks, that she doesn't climb a lot of stairs, and absolutely no jumping on or off things like furniture. They said going up a couple stairs to the couch or off the deck was fine, but no long flights of stairs. They said it was better to carry her. We don't have more than three steps from our house into the garden and have a couple steps so she can get on the sofa, so we're good there.

She has slept a lot after coming home and had a glazed look on the drive home. She's been pretty groggy from the anesthesia but is starting to perk up tonight. She had a light dinner, and is checking for crumbs in the kitchen so she's getting back to normal.

So... that's our news. We're still in a bit of shock and feeling overwhelmed here. We expected the diagnosis, but not the severity. She seems so happy, and is even better since being on the furosemide. We will do everything we can to keep her comfortable, happy and pain-free. Haven't decided on surgery yet. The neuro seemed to think we should do the meds first and then do surgery if/when the meds stop working. He said if we do surgery, that given the extent of the syrinx, the goal of the surgery would primarily be to prevent the worsening of any clinical signs. He said to contact him if her clinical signs worsen or if we'd like to schedule surgery.

Are there any stats of dogs who are this severe who have been successfully managed with meds alone?

Karlin
18th July 2008, 07:43 PM
Wow, that must have been such a lot to take in. I am sorry you got a more worrying report back as you do always hope for the mildest scan. Also yes that is definitely the case that sometimes really mild scans have very severe symptoms and vice versa but this is always pretty unusual.

If you want an honest opinion from me, if this were my dog, I'd want to see if Dr Marino or Dewey or Rusbridge would give you a second opinion on the scan; you can probably contact LIVS in Long Island and arrange for a second opinion reading or same from Clare Rusbridge for a fee of some sort. I'd just be concerned that if so little space is left in the spinal column that you may end up with a severe onset where the only real option might be to pts which means you had no options. Medication is always an option but 'option' in the case of SM is a limited term and has usually, a pretty narrow meaning in severe cases. Medication generally has to be viewed as something which may help limit pain for a certain amount of time but for symptomatic dogs things generally worsen and medications do not halt or prevent or reverse SM. If you are seeing such a massive syrinx, that shows gradual severe progression over time, slow enough that Sadie has to some degree learned to cope. I have heard DR Marino speak of a similar MRI that he showed at a UK meeting where he noted that if a dog had such a syrinx come about suddenly say due to an impact, he'd expect the dog to be in crippling pain. Only because it comes on gradually does the dog learn to cope.

With a really severe scan I'd be wondering how long the dog could continue to progress and cope and how much permanent damage will be done once that syrinx enlarges any further. I'd be opting for surgery myself or viewing the situation as having chosen the option of palliative care. But that is me. However this is based on having a pretty good idea of what Drs Dewey, Marino or Rusbridge would say with a scan like that -- I think they'd be saying do the surgery, if you want any chance of significant time left with Sadie. But again that's something you'd want to speak to someone directly about which is why I am suggesting a second opinion IF surgery is an option in your mind.

The other reason I'd suggest this is that, based on your original post, I would not call the symptoms you have seen as mild or insignificant. This is what you noted about Sadie:


We have suspected that my girl Sadie (almost 5 yrs old now) has SM. She does the bunny hop and air scratching when she walks, she scratches her neck/ear area, she's slowed down and sleeps more, she needs steps to get up to the couch because she won't jump up anymore, she won't jump off anything, and we have to pick her up in just the right place so she doesn't yelp, and she sometimes looks like she has a headache. These have all been mild and variable symptoms where they only show up once in awhile since she was two. But lately they have increased in frequency and she also started getting a head tilt (we noticed it just a couple weeks ago after we watched a video of her we had just taken) and she is getting some curvature of her spine at times. We are worried she might be in pain and want to do more to help her.


Many neurologists -- including all those doing research in this area, whom I have heard speak a couple of times -- would definitely consider these moderate to severe symptoms -- head tilt, scoliosis and inability to get up stairs or onto furniture count as severe symptoms for Dr Rusbridge and Dr Marino.

That won't be what you wish to hear after going through so much already but in your position, and considering the two options, I'd very definitely want a second opinion and I'd want it right away. :flwr:

With a syrinx that severe, if I were considering surgery I'd probably be looking at going to one of the neurosurgeons who do the modified decompression with titanium mesh or a shunt to drain the syrinx. Regular decompression doesn't seem to reduce syrinx size and with a large syrinx I'd probably want to get some reduction of syrinx size.

Again, I am speaking about the choices I would make, and I know this is a very personal decision and is never easy. We all have different approaches and paths with this condition.

Ruth M
18th July 2008, 09:32 PM
Hi Teri
Thinking of you and the dilemma you are facing. My nearly 2 year old b&t 'Tilly' has been diagnosed with severe SM through MRI - and I have been on your journey - what a rollercoaster of emotions :( However access to this site has been a revelation - Tilly has the correct dose of gabapentin (now taking it really well in cream cheese - thanks Karlin :p)!
You face a tough decision - the neurologist I saw at the Royal Vetinary College (UK) didnt even mention surgery as an option - just gabapentin and wait and see. They said many dogs lead a full and relatively pain free life with the meds. I was thinking of a referral to Clare Rusbridge.
Tilly has the gabapentin 3 times daily - and is doing really well on it, she is slighly sleepier, but has a good appetite, jumps for her lead and loves her walks!
Heres my decision - and I dont want to sway you but there is sooo much to consider. We will not opt for surgery. Tilly has already had major surgery (luxating patella) and the impact and worry on our family was huge. Even recovery from the MRI was tricky.
I was heartbroken when I found out Tilly had SM - you get a cavi and soon realise they become a pivotal part of your family life - shes my little buddy! But then I took a step back and reassessed the situation - why did we get a doggie in the first place - to enrich our family life. I was fretting about Tilly so much it was slowing enveloping me - and my family. Now that I have decided - keep my girl as pain free as possible, give her an awesome life - live it to the full - and one day at a time - we ALL (including Tilly) seem so much more relaxed and are just loving our time together - however long that may be.
Anyway thats me - I really feel that now we have made a decision a great weight has been lifted.
Just wanted to share this with you - its not the decision for all I know, but I think its good to look at all the angles - as Im sure you are.
Thinking of you and yours.
Ruth:lotsaluv:

ppotterfield
18th July 2008, 11:24 PM
I was heartbroken when I found out Tilly had SM - you get a cavi and soon realise they become a pivotal part of your family life - shes my little buddy! But then I took a step back and reassessed the situation - why did we get a doggie in the first place - to enrich our family life. I was fretting about Tilly so much it was slowing enveloping me - and my family. Now that I have decided - keep my girl as pain free as possible, give her an awesome life - live it to the full - and one day at a time - we ALL (including Tilly) seem so much more relaxed and are just loving our time together - however long that may be.



First, Teri, so sorry to hear the severity of the diagnosis. If it was I, I would get a second opinion, before I made a decision, and would discuss with them in detail the prognosis. I know there are no guarantees, but I would want a very frank discussion of pros and cons.

Second, I do not disagree with those who make the decision for surgery, but I do think that there is sometimes, in some circumstances, merit to Ruth's approach, and none of us should think those who thoughtfully choose that approach love their dogs any less than those who choose to have them undergo surgery. Very personal decision based on many varied circumstances.

Hugs to all of you who face these decisions. As long as your decision is based on a combination of knowledge and love, it will be the right one for you, your family and your dog.

tara
18th July 2008, 11:39 PM
Teri --I have no words of insight or knowledge on this subject, but just wanted to let you know how very sorry I am that you are facing this with Sadie. It sounds like you are a wonderfully caring mom to her and that whatever you decide will certainly be in Sadie's and your family's best interests.

Again, so sorry that your news was not good. I wish you the best in this difficult time. Thank you for sharing your story with us and please keep us informed on Sadie's progress.

Karlin
18th July 2008, 11:41 PM
Thanks for those replies. :) They explain a range of views really well.

I should add that I have used medications, not surgery on my MRI-diagnosed cavalier. I continue to evaluate where he is and what to do next. I will likely re-MRI him this summer, but he had a very small syrinx on his first MRI. However his symptoms have progressed and the next MRI will help me consider what to do next, but so many different considerations go into each decision. Nothing is easy with CM/SM.

My concern is that people make sure they get a very good analysis of what the MRI shows and what its implications are, and that usually means trying to get a neurologist with lots of experience of this condition, and who is willing to explain why they are making a particular recommendation. There are neuros who lean more to surgery -- especially perhaps neurosurgeons like Dr Marino who naturally will see surgery as a key approach -- and those who are in the middle, and those who are conservative. Those with more experience of the condition in cavaliers will also be revising their recommendations based on experience and evidence.

I'd be a little concerned about a severe MRI and a recommendation to focus on meds only, because I think with such an MRI, the situation could change devastatingly rapidly and people need to understand that such a change -- with no alternatives but to pts -- may be part of their choice (it definitely doesn't mean such a choice is wrong, just that I think people shouldn't be mislead to think they may have lots of time and room to take decisions about surgery if things decline further). I don't have the expertise to make professional recommendations of course, but I do have enough time spent with researchers and at conferences on SM in cavaliers to have a pretty good sense that some leading figures might give an alternative interpretation that is worth considering. It doesn't mean they are right, but in medical issues I like to also have the viewpoint of someone with a lot of knowledge about an area.

I think Ruth's approach is just right, whatever the choice people make. Make the best decisions you can on the information and advice you get and then enjoy each day and don't worry about what might happen until it happens -- but make sure you are well-informed to make decisions if things change.

I waver all the time on surgery or no surgery; it is a hard decision and I like the least intervention possible. Many would have done it already on a dog like Leo. I decided not to to date, because he has few symptoms beyond scratching and very rare yelping if he is touched somewhere sensitive. I do weigh up the rate of his progression. In his case, if he was showing scoliosis and was having problems getting up and down things, I'd probably -- at his current age of nearly 5 -- do the surgery with Clare.

Margaret C
19th July 2008, 06:43 PM
I so agree that you should make your decision & then enjoy every moment of their lives.

I now have three dogs with SM, as my mother's affected cavalier has just returned to live with me.

My homebred blenheim, Tommy, was scanned at a low cost centre when he was four. At that time his symptoms were very mild & he would have been a candidate for surgery.

I thought hard about my options & decided that I would not put him through what I felt was a very invasive operation.
I have 10 dogs & I knew I would not be able to keep his environment calm & quiet. Being disabled I would not be able to carry up & down steps if he needed it.

I knew I would not be able to nurse him as he should be nursed, & I also knew that if things went wrong I would always feel it was because I omitted to do something I should have done.

I also accepted that if he did not have the operation, but later deteriorated and needed to be put to sleep, I would have to live with the fact I made the wrong decision.

Tommy is now eight, he scratches & face rubs a little when excited, limps sometimes and is very demanding of attention if I forget his daily rimadyl. I love him & try & make sure he has the best life possible
I don't know if he would have been better with the decompression surgery or not.

I agree with Karlin that you need to speak to a neurosurgeon with experience of SM as your little girl is showing quite severe symptoms.
When you have the full picture you can decide what is right for you, your family & your pet.

Best wishes,

Margaret C

Teri
21st July 2008, 03:18 AM
A very big Thank You to all of your for the kindness and support you have shown me through this trying time. Your ideas and varying opinions have really helped me to gain some clarity. It took me a couple days to get out of my fog of confusion and sadness and your posts really helped me. I have a list of questions now to ask our neuro tomorrow, and I am going to request an opinion from Dr Dewey, Marino or Rusbridge. I will be trying to find out how to go about this tomorrow. I have not made a decision about surgery yet. I will reserve my decision for after I receive more information from my neuro and the SM specialists who know this disease better than anyone. In the meantime, we are concentrating on getting her set up with her meds and getting her as comfortable and pain-free as possible. Oh, one thing I was wrong on was that Sadie does not have scoliosis. The neuro examined her and did not see it. So maybe I was seeing something that wasn't really there.

Sadie has recovered from her MRI. She seemed pretty sore the day after the MRI and slept a lot. They must have put her into positions that didn't agree with her. But she's been playing and wagging her tail yesterday and today so she's back to her old self again.:rah:

I do have a question for those of you who have had dogs go through surgery, or are familiar with it. What is the recovery like for them? Just wondering what I would be subjecting her to if we did choose surgery. That is something that I will be weighing as well. Its a tough decision because there is the unknown of the disease and the course it will take, the possible pain that can't be taken away. I keep seeing that video of the severe case on Karlin's website and I pray that won't be Sadie one day. That poor baby. And then on the other hand, there is this highly invasive surgery, messing around near her brain and spinal cord which scares me a lot! I would think the recovery would be quite painful from that as well, but I'm not real clear on that.

Thanks everyone! I so appreciate you being here for us! :lotsaluv: