Has your CKC had surgery for Chiari-like malformation?

[drphilzeltzman]

Hello,

I would like to get some feedback from CKC owners who have opted for surgery. Specifically:

. Who did surgery and where exactly? (remember this is an international forum, so please be specific
. Why did you choose surgery? Did medications not work anymore?
. What was the outcome?
. If you don't mind, what was the total cost?
. Any other comments?

Thanks for sharing your thoughts!

drphilzeltzman - doggie surgeon
www.drphilzeltzman.com

[Love my Cavaliers]

Riley had SM decompression surgery with placement of a titanium mesh implant exactly a year ago. She was 5 years old at the time. Dr. Michael Podell in Northbrook, Il (about 20 miles north of Chicago) did the surgery. His neurology practice is part of the Animal Emergency and Referral Center. They have many different specialists there - internal medicine, orthopedics, neurology, cardiology. I elected to do the surgery because Riley was having worsening balance issues and seizure like activity. She never scratched or whimpered in pain when picked up or touched. She was diagnosed by MRI a month before surgery and I had never heard of SM. The MRI showed advanced and severe SM with a cerebellar cyst. I took her for a second opinion with Dr. Darren, a neurologist at Veterinary Specialty Center in Buffalo Grove, IL and his recommendation was the same as Dr. Podell's - that her best chance of a longer life with better quality was to do surgery. Neither felt that she was a candidate for medical (pharmacological) management.

Riley is now on 5 mg prednisone a day and Denamarin to protect her liver. She still had balance issues post-operatively that have been almost eliminated by the prednisone. Prednisone and Gabapentin given to her before surgery had no effect at all. Because of the lingering problems with her vestibular system, Riley has seen Dr. Podell every 2 months since surgery while he figured out how best to manage her. She has been on prednisone for 2 months now and she is due to go back and have her blood checked next month.

I can't remember the total cost, but I think it was around $4000-$4500 US dollars for the MRI and the surgery.

I would do the surgery again in a heartbeat. I have no regrets about doing it. Riley is still a little different from my other dogs even though I can't quite put my finger on how. She's a little slower and quieter, but as loving and sweet as before surgery. She is a little trooper and never complains about anything.

Hope this is what you wanted and hope it helps.

[Karlin]

Some folks may wish to respond privately too, if you prefer not to make a public post. However a public post here will make a helpful thread for others who may be facing this decision or may just wish to learn more.

Dr Zeltzman, you may also find some useful discussions abut individual surgery experiences here:

http://pets.groups.yahoo.com/group/CKCS-SM-support/

I keep the archives on public access.

[Molly's mom]

Who did surgery and where exactly?

Dr. Curtis Dewey, Cornell University Ithaca, NY 2/21/2007

Why did you choose surgery?

My Molly was 21 months old and her only symptom was left sided neck scratching. An MRI revealed a large syrinx. With the titanium mesh procedure we were hoping to halt progression. We knew the statistics going in but we made the decision based on the belief that we would end up on the good side of those statistics.

What was the outcome?

Molly had post operative pain complications that required extensive procedures including, MRI, CAT Scan, accupunture, and various meds.
Recovery time was 4-5 months. Unfortunately despite our efforts the disease has been slowly progressing over the last two years. Molly has sensitiviy that encompasses the left side of her neck, shoulder, chest and most recently her left back hind quarter. She has a slight head tilt and can no longer wear a harness unless that left side is "behind" her leg.
She is taking 600mg gabapentin, 10mg prilosec, and 10.25 mg or deramxx per day.

If you don't mind, what was the total cost?

Because of the post operative procedures/meds, we figured total costs were approximately $7,000. $3,000 of which was covered (with effort) by insurance. This does not include travel/meal expenses that were involved.

Any other comments?
Our goal was to halt progression of the disease which it did not, and the 4-5 months of her life that she spent in agony (she's 4 now, so that was 1/4 of her life), she'll never have back. On the other hand, we may have at least "slowed down" progression, and she would have been far worse if we hadn't proceeded with the surgery. Because of this, I try not to ask myself if it was worth it or if I would do it again, because I truthfully do not know.

[WoodHaven]

Riley had SM decompression surgery with placement of a titanium mesh implant exactly a year ago. She was 5 years old at the time. Dr. Michael Podell in Northbrook, Il (about 20 miles north of Chicago) did the surgery. His neurology practice is part of the Animal Emergency and Referral Center. They have many different specialists there - internal medicine, orthopedics, neurology, cardiology. I elected to do the surgery because Riley was having worsening balance issues and seizure like activity. She never scratched or whimpered in pain when picked up or touched. She was diagnosed by MRI a month before surgery and I had never heard of SM. The MRI showed advanced and severe SM with a cerebellar cyst. I took her for a second opinion with Dr. Darren, a neurologist at Veterinary Specialty Center in Buffalo Grove, IL and his recommendation was the same as Dr. Podell's - that her best chance of a longer life with better quality was to do surgery. Neither felt that she was a candidate for medical (pharmacological) management.

Riley is now on 5 mg prednisone a day and Denamarin to protect her liver. She still had balance issues post-operatively that have been almost eliminated by the prednisone. Prednisone and Gabapentin given to her before surgery had no effect at all. Because of the lingering problems with her vestibular system, Riley has seen Dr. Podell every 2 months since surgery while he figured out how best to manage her. She has been on prednisone for 2 months now and she is due to go back and have her blood checked next month.

I can't remember the total cost, but I think it was around $4000-$4500 US dollars for the MRI and the surgery.

I would do the surgery again in a heartbeat. I have no regrets about doing it. Riley is still a little different from my other dogs even though I can't quite put my finger on how. She's a little slower and quieter, but as loving and sweet as before surgery. She is a little trooper and never complains about anything.

Hope this is what you wanted and hope it helps.

I am adding my comments here because we went to Dr. Podell and he talked us out of the surgery. Our boy had head trauma that caused a seizure disorder-- a full MRI discovered syrinxes. The only symptom the dog had were the seizures that are treated with Phenobarb/KBr.

[Love my Cavaliers]

Sandy - I'm so glad you didn't have to go the surgical route. I felt like I had no other option with two different neurologists saying Riley needed surgery. Nice to know Dr. Podell doesn't push the surgery on every dog with syrinxes that he sees.

[WoodHaven]

Sandy - I'm so glad you didn't have to go the surgical route. I felt like I had no other option with two different neurologists saying Riley needed surgery. Nice to know Dr. Podell doesn't push the surgery on every dog with syrinxes that he sees.

With all of the 'reports' of neuros doing surgery on dogs with syrinxes and no pain-- some that are 7-8 years of age even, I wanted to point out that we were directed to 'wait'. It has been 4 years and he still shows no symptoms of pain. We have to do blood tests and exams to make sure his pheno isn't causing any organ issues or that he isn't progressing. He really seems to be enjoying life.

[Karlin]

One of the issues is that doing the surgery before there is significant pain -- but an MRI indicates a problematical syrinx, or several -- is that there is growing evidence of greater long term success. Waiting until there are clear signs of pain may mean permanent neurological damage, and/or poor recovery and/or scar tissue formation that may ultimately recreate all the earlier problems or make them even worse. The difficulty for neurologists and owners is that dogs can't explain when they have pain and even neurologists can only gauge certain types of pain.

Owners also have a hard time understanding and measuring neuropathic pain -- it isn't very obvious much of the time especially in an animal, which will instinctively hide pain. I've seen so many owners say 'my dog is in no pain' who go on to also note 'but...' their dog 'only' scratches regularly (most neurologists consider this a sign of pain and existing and often permanent neurological damage to the dorsal horn -- which is why so many dogs remain on gabapentin post-surgery for life -- the damage is already permanent), or yelps but not all the time, or shows a bit of tenderness but not all the time. On the pain scale agreed upon by the neurologists in London in 2006 most of these things happening even *once a week* is considered a significant indication of pain. Neurologists do a special set of tests to check how compromised a dog is -- vets and owners will not generally see these subtle indications themselves (that is why the dog gets referred to specialist to start with ). And headache is the main indication of pain in most humans with CM/SM-- but how do owners tell their dogs have serious headaches? Neuropathic pain also tends to come and go -- humans will talk of good days and bad days with chronic neurological pain.

On another list a person spoke of seeing a video shown at one of the major club shows by neurosurgeon Dr Marino from a study on pain in animals, that showed a dog that wagged its tail and showed no problems when its owner came into the room, but shivered and shook with obvious pain when the owner was gone -- an indication of just how hard they will work to NOT show us, their owners, their true level of discomfort and distress.

So really there are many factors that go into a surgery recommendation from experienced neurologists. The best approach I think is to discuss the 'why' of any recommendation and also ask if there are existing signs of pain that might be missed by the owner and take it all into consideration when making this often very difficult decision.

I've seen a lot of internet postings elsewhere recently from people who haven't even been to a neurologist with an affected dog, implying there are floods of dogs with no pain and no problems all being told to have this surgery by unnamed neurologists. These posts have no specific references -- the poster always seems to have 'heard' of these stories. If so, where? I run two of the four primary discussion areas for owners of affected dogs, and am a member of the third and read it daily, and I haven't come across them. I was on the fourth list for a long time and doubt there's a hidden group of people who never post anywhere else all of whom have been advised to have surgery when there's no real indication this should be done, or done only on their old dogs. I am wondering where all these stories are being discussed and who the owners are... and some of the post are not very sensitive towards the owners who actually are forced into having to make decisions on behalf of their dogs that none of us ever want or should have to face in the first place . Most of the people I've seen make posts about this seeming flood of asymptomatic dogs going for surgery are people who have never been through this experience themselves.

Meanwhile, I've talked to many of the neurologists, and dozens of owners have reported their experiences to me publicly or privately over the past four and half years, and I truly don't know of any neurologist who takes such a recommendation lightly.

There are of course also many reasons not to choose a surgical route. Those perfectly good reasons can be highly personal, based on one's own philosophy on surgical intervention, one's finances, ability to manage a post-op dog, age and condition of the dog, other health complications, etc etc.

[drphilzeltzman]

Wow!
Thanks for sharing your thoughts!
I'm so impressed by the amount of knowledge you all have!
Obviously the choice is difficult, both for the owner and the (neuro)surgeon, and for many reasons as Karlin explained very well.

I am actually working on a newsletter on Chiari and SM. We're seeing more and more cases as our local MRI center (AnimalScan in Easton, PA) diagnoses more and more. And in the past week, I've had 2 affected Goldens!
If you're interested in my (free) newsletter, you can subscribe from my web site.
Thanks again for your candid answers.

DrPhilZeltzman - doggie surgeon
www.DrPhilZeltzman.com