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Madison diagnosed through MRI with SM

Bridam

Well-known member
Hi. I'm new here. Our three year old girl was just diagnosed with SM.

Madison is three and has been showing mild symptoms for the last two years. She scratches many times a day, exhibits bunny hopping, walks a little funny, tucks in her rear, and will yelp occasionally when she's being picked up. We haven't notice much clinical progression over the years.

We have very good (and expensive) vets and have spent the last two years back and forth trying to find a resolution. We got side tracked with allergy testing and shots. It turns out that our baby is allergic to everything. Only after going through allergy treatment protocol did we convince the vet to recommend an MRI.

Her results came back a few days ago and the physical prognosis was far worse than we expected. The imaging report stated that she is severely affected by the disease. She has severe chiari. Her cerebellum has herniated. She has syrinxes covering 95% of her spinal cord.

After consulting with various neurologists including Dewey and (I believe) Rusbridge, our vet was not confident that, given Madison's lack of pain, the risk of surgery and recurrence outweighs the benefits. We are currently following Rusbridge's medical protocol and are giving her diuretics.

I've had read everything I can that's available online and have several questions about Madison's prognosis given the severity of the syrinxes. I've read of course that the clinical progression is variable and that surgery is often not indicated unless there are signs of pain. But, is there any reason for the syrinxes to get any worse at this point now that she is fully grown?

On the other hand, I am worried that, given the severity, if we wait too long, we'll find ourselves with no options. At what clinical and physical point are people getting the surgery?
 
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I'm so sorry for what you're going through with Madison.

Has a neurologist examined her yet? I would take her to see at least one neurologist for a neurological exam to find out if she has any neuro deficits and neuropathic pain, and to get an opinion on medical treatment or surgery.

I have a severely affected cavalier, Charlie, who recently had decompression surgery. From what I understand, the surgery will not make the syrinxes go away. It will only relieve the pressure on the brain and spinal cord from the back of the skull.

Charlie's neurosurgeon told us they get better results when the surgery is performed earlier in the disease. In other words, the longer the dog is symptomatic before surgery, the less successful the outcome.
 
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I'm so sorry for what you're going through with Madison.

Has a neurologist examined her yet? I would take her to see at least one neurologist for a neurological exam to find out if she has any neuro deficits and neuropathic pain, and to get an opinion on medical treatment or surgery.

I have a severely affected cavalier, Charlie, who recently had decompression surgery. From what I understand, the surgery will not make the syrinxes go away. It will only relieve the pressure on the brain and spinal cord from the back of the skull.

Charlie's neurosurgeon told us they get better results when the surgery is performed earlier in the disease. In other words, the longer the dog is symptomatic before surgery, the less successful the outcome.


Thank you for your response. She hasn't been examined by a neurologist yet. My vet said there wasn't much point. Madison isn't showing severe clinical symptoms at this point. They have looked at her MRI and we didn't get good feedback. We were told that there isn't enough evidence that the surgery has long term positive results.

The local neurosurgeon who has done a handful of these here in Dallas told our vet that she has had to perform second surgeries on more than half her patients due to recurrence.
 
For Madison's sake, I will stick my neck out here and say your vets are wrong. Whatever your ultimate decision, you really do need a neuro consult especially with this severe an MRI if you want to make an informed decision on Madison's future -- neurologists will have a much better idea of what is going on and also a clinical exam by a neuro will likely reveal additional problems developing that vets cannot spot -- such as limb weakness, poor gait, pain points along the spine. Basically, vets are not specialists and this is a specialist disease. Most vets will never see a case of SM in their careers so they can be understandably misinformed.

On pain and how much damage has been done: dogs can compensate for the extremities of pain they would otherwise feel with the type of MRI your girl had because progression is slow -- but nonetheless, they are still burdened with a heavy weight of neuropathic pain. If you know any people with this, they will explain how debilitating this type of chronic pain is. Dr Marino showed a slide of a dog in at October's SM conference in Rugby, UK where he noted that if that dog just suddenly received an injury that caused that many syrinxes the dog would probably not live through the pain.

Syrinxes have been partially resolving with Dr Marino and Dewey's surgery. even when the syrinxes don't resolve the point of the surgery is to relieve pain and the removal of some of the skull to get rid of the herniation and hind brain pressure seems to accomplish that for about 80% of dogs at least within the first year.

The neurologists who met at the first SM conference in London in 2006 were unanimous on the point that dogs that are symptomatic before age 4 tend to be the most severe cases and develop the most pain. If you have an MRI like this now, I would go in and talk to Dr Dewey or Marino if you are driving distance of LIVS, and do so as a matter of urgency. I know from attending these events and talking to these neurologists as well as many people with SM dogs that younger dogs with severe MRIs often will suddenly go downhill -- even within days or weeks. Their CSF flow is so compromised by syrinxes and the herniation and malformation that at any point any small progression can cause them to crash.

Treatment is always a very personal decision but I think with younger symptomatic dogs with poor MRIs the feeling amongst neurologists is definitely that surgery probably offers the only chance for anything like a medium to normal lifespan and a decision to opt for medications instead needs to be understood in that context. Vets incidentally do not have the skillsets to accurately read and interpret MRIs so really you need a neuro to explain the MRI to you and discuss prognoses. It sounds like they may not be very familiar with the overall literature and papers given in the past two years on the surgery either -- Dewey and Marino have been having very good results so far (though have only been doing their specialised version of the surgery for about 2 years but all dogs are doing really well! Clare Rusbridge has about 50% doing very well post surgery up to 7 years after, with some having some return of symptoms but that being fairly manageable on medications. Only a small portion of dogs do not do well and those tend to worsen within a few months of the surgery. That's a very high rate of second surgeries by the surgeon mentioned -- usually the figure is more like 20%. Dr Marino feels many do not remove enough of the dura and thus scar tissue reforms so perhaps it is technique? Dewey and Marino to my knowledge have only needed to perform a second surgery on one dog in two years and that was due to a separate issue. Marino discusses it in his talk on the CDs noted below.

I'd have a look at paper 9 by Rusbridge and the Marino presentation after it from London 2006 here on my SM site:

http://sm.cavaliertalk.com/research/london/london06.html

Also you might be interested in the CDs of the Rugby conference as both Clare and Dominic Marino discuss surgical outcomes:

http://www.cafepress.com/cavaliertalk/4311456
 
Thank you so much. This is why I've been spending my nights searching out more information and looking for those caring individuals going through the same thing.

I'm inclined to get a second opinion but believe my vet's opinion was based on conversations with Dewey and Rusbridge. But there is no harm in getting a second opinion. I want her around for as long as possible. Thank you,
 
I do not have a dog who has been diagnosed with SM but our Bud Bud has had PSOM which at one time I feared may be SM. SM has not been totally ruled out but he is essentially asymptomatic since his PSOM surgery so :xfngr:.

Treatment decisions are so difficult and it is particularly difficult when you feel you must go against the advice of a Vet who may have been caring for your dogs for a long time and may have become a friend. If I were in your situation, I would want to confirm who has seen and read the MRI and if it has not been seen by a neurologist with extensive SM experience I would want to make certain that it was AND I would want to have a consultation with the neurologist, by telephone if necessary, not just have my Vet talk to him or her.

Am I correct from your post that you are in Dallas, Texas? Any one on the list have advise on a Vet neurologist in Texas or the Southwest that may be a good specialist to see Madison?

Best of luck to you and let us know what you find out.
 
Thank you. Tomorrow we are going to start looking for a local neurologist with experience with this disease to take over treatment/monitoring of this condition. It makes sense.

We'll start by calling the ones listed on this site. If anyone else has any other recommendations in Texas, it would be appreciated. Thanks,
 
In Texas, I would recommend:

Dr. Carley J. Abramson
Gulf Coast Veterinary Specialists
1111 West Loop South, Suite 160
Houston, TX 77027
Tel: 713-693-1111; 713-693-1122
E-mail: [email protected]
www.gcvs.com


She has been involved in considerable research on SM in cavaliers when she was in Ohio. Good luck and let us know what feedback you get. There are no 'wrong' decisions -- but it can be very hard to make the right decision for us and for our dog. It needs to be a mix of both, and with this condition, there's rarely a definite answer. But I'd only make a decision with a neurologist's professional opinion. They also differ in approach and technique, so it takes further weighing up of what seems right in each individual case.
 
In Texas, I would recommend:

Dr. Carley J. Abramson
Gulf Coast Veterinary Specialists
1111 West Loop South, Suite 160
Houston, TX 77027
Tel: 713-693-1111; 713-693-1122
E-mail: [email protected]
www.gcvs.com


She has been involved in considerable research on SM in cavaliers when she was in Ohio. Good luck and let us know what feedback you get. There are no 'wrong' decisions -- but it can be very hard to make the right decision for us and for our dog. It needs to be a mix of both, and with this condition, there's rarely a definite answer. But I'd only make a decision with a neurologist's professional opinion. They also differ in approach and technique, so it takes further weighing up of what seems right in each individual case.

Thank you. We'd really like to find someone in Dallas as this will be a long haul (I hope) but if there is no one here with experience, we'll make the drive!
 
I also checked Cavalierhealth.org. and she is the only one listed that is known to have SM experience (noted in red).

http://www.cavalierhealth.org/neurologists.htm#Texas

She would definitely be highly recommended though -- one of a handful in the US with strong SM experience both in practice, as a surgeon and in research.

I'm sold. It's just that my wife is pregnant and I work 70 hrs/week. It will be hard to make five hour trips. Once you get though the initial consultation, how often, on average, are people making return visits? I'm sure it's highly variable but it would be nice to know what we're getting into before we take the plunge.
 
I do not know for certain, but would anticipate that much of the follow-up care can be handled by a Vet in your area in consultation with the specialist. I would try for a telephone consultation with Dr. Abramson, who might be able to recommend someone in Dallas you could work with, or could give you a pretty good idea of how often you would need to make the drive back and forth from Dallas to Houston. Folks outside Texas (but never Texans) forget how big Texas!

Again, best of luck.
 
Thank you all very much. I called Dr. Abramson's office. When she calls me back, we'll see what we can do.

On another note, I really fear that she's starting to progress. She yelped for the first time last night jumping off our couch. And, she stopped wanting to jump on the couch. Small signs, I understand. It could also be that we are now hypersensitive. But, if these things bother me so, I can't imagine watching severe pain episodes.
 
I spoke with Dr. Abramson. She's very nice and I was impressed with her knowledge. She's done both shunt and decompression surgeries and has even combined them. She said that she'd have no problem monitoring Madison over long distance once we come up with a game plan.

I'm sending her the mri tomorrow and will try to make the trip as soon as possible--maybe even MLK day (I get it off). I'll keep you all updated. Again, my sincere thanks for steering me in the right direction.
 
Glad you got in touch with her. Keep us posted. We will keep you and Madison (and expected human baby) in our prayers.
 
Thank you all for your kind words. We have an appointment with Dr. Abramson for next Friday. It gives me some peace of mind to know that we are doing everything we can--although the above post about quick degradation gives me some pause. In the meantime, here is a puppy pic from almost three years ago:

of=50,296,442
 
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Don't have any advice to offer. Just want to let you know that I'll be keeping you all in my thoughts and prayers :hug:
 
Here is an update after consulting with Dr. Abramson today.

We made our way back and forth to Houston today (about 8 hrs). GCVS is an amazing facility that seems top notch. The feel is more like a hospital than a vet's office--very reassuring.

Dr. Abramson was very nice and extremely knowledgeable. She performed an exam and watched Madison walk up and down the hall. Madison showed normal gait and propioception in all limbs. Reflexes and cranial nerve function were normal. Dr. Abramson noted a right-sided head tilt and pain during cervical palpation, however. Clinically, Dr. Abramson classified Madison as mild at this point with no general pain (this made my wife very happy).

Her view of Madison's MRI confirmed that Madison has severe chiari with hydrocephalus and syrinxes (about 90% of her spinal cord).

We discussed both surgical and medical options. If we go the surgical route, she recommends a combo shunt/decompression surgery: the shunt aimed at reducing the hydrocephalus. In discussing this with her, we learned that she has performed many shunts. Her background was very impressive and she conveyed confidence in her abilities while being very respectful of the delicate nature of the spinal cord.

Medically, she put Madison on Prednisone and took her off the salex (as we've seen no improvement).

My wife and I have a lot to think about and want this to sink in before we make any decisions. Our goal, of course, is to keep Madison from deteriorating. We'll keep you guys updated on what we decide.

Whatever we do, we're very happy that we finally got Madison seen by someone with as much expertise as Dr. Abramson who will be taking over all care for Madison concerning this condition. For pushing us in the right direction, we sincerely thank you all.
 
I'm really glad you spoke with her -- it makes a huge difference to talk to a neurologist who is very knowledgeable and experienced in this particular condition I think. I have heard many good things about Dr Abramson over time. I know people do often wonder whether to talk to a neuro etc but I always feel people need as informed a viewpoint as possible to make informed choices. It makes us as owners feel more in control of a potentially difficult situation and more of a participant in the decision process rather than a confused onlooker. I know it really helped me with unnecessary worrying to get an MRI and consult. Before that I didn't know enough about what was going on and you can waste a lot of time worrying pointlessly. I always say, save the worrying for the times you really do need it -- it is so draining and unproductive that I'd rather know what exactly I should be worrying about rather than deplete myself due to lack of the best knowledge I can get. There are always uncertainties with SM but there's a lot we can do as owners to feel we are making the best informed decisions we can and it's funny in a way how just getting a clearer picture of what is going on (eg even just that clinical exam you had where a neuro can assess the actual affects on the dog right now -- something a vet doesn't know how to do and an MRI won't show on its own) really helps.
 
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