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Suspect SM

Teri

Active member
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
 
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.
 
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.
 
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.
 
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: [email protected]
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.
 
Sorry to hear you suspect SM in Sadie....but glad you are being proactive and have come here for guidance and information.
 
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.
 
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)
 
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.
 
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?
 
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:
 
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!
 
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:
 
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.
 
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?
 
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.
 
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