Question about SM--Abbey just diagnosed-long post

[Pat]

Hopefully, Linda won't mind if I respond! The neuro at Auburn is Dr. Andy Shores, not Dr. Todd Axlund. Axlund did a study at Auburn (with low cost MRIs) a couple of years back, but he has moved to Ohio. I do not know what techniques Dr. Axlund is using. Dr. Shores is using skin from the dog for the "patch" rather than using titanium mesh as Dr. Dewey and others are/were using. (I don't know yet where the skin comes from!) I saw a post just the other day on another forum discussing another neurologist who is doing this and now I can't find it. Karlin and/or Rod probably know about this and can elaborate. The idea is that it may minimize scar tissue, etc, better than the titanium mesh.

Since I'm two hours away from Auburn, I'll want to learn as much as possible about the program there as this evolves - but mostly after the fact as I don't want to be intrusive. I was impressed that Dr. Shores gave Linda a copy of the Rusbridge/Dewey paper that was in the just released Kirk's Current Veterinary Therapy XIV textbook. (I've been meaning to bring up that paper for discussion here and just haven't had time to do that post.) That textbook is the "Bible" for US veterinarians, and with the release of this volume a lot more US vets will become familiar with SM. I recently bought the volume (and the newly revised Manual of Canine and Feline Cardiology which has lots of new info from the ten year old edition that had been my most treasured reference text) and I gave a copy of the SM paper to my own GP vet. Reading that paper answered a lot of questions that have been asked in various forums lately and really helped me to understand - and there was an unprecedented reference listed at the end of the paper that I want to mention here! (At least in all my years of reading medical texts I've never seen such a reference.)

Rod - on your listing of neurologists, you have the ones with SM experience highlighted and Auburn isn't one of those so recognized, so we'll want to give you feedback for your site.

We've identified at least four US people whose dogs are now three and four years post-op, so they should be able to give good counsel.

Pat

[brotymo]

Linda,

I know you will do the best for Abbey. You all are in my thoughts and I wish you all nothing but success. Hugs,

[linderbelle]

I may have given Pat some wrong information and have e-mailed her in regards to the paper that we were given. It might not be the one that she was talking about. Just wanted to clarify that. Also, she is correct. The doctor is Dr. Shores and NOT Dr. Axlund. Dr. Axlund was at Auburn a few years ago and did do a study. He must be a great guy as the receptionist said she still missed him. In regards to the titanium mesh Dr. Shores calls it a fat graft I believe. We recorded the consultation with him and I have listened to it now 3 times and just did again. We're going to try to get this tape duplicated and get to Pat as I feel it will help others.

Pat is right about Abbey. Her history is as follows.

A seizure as a puppy--two weeks after we got her in fact.
The scratching, licking paws, etc. has been going on maybe at least 2 years. She has been diagnosed as "allergies". I have tried every food on the market--tried making food--I have tried every shampoo on the market--I have witheld cookies because they might have something that wasn't in the dog food to rule out allergies to the food. The list goes on and on. I never had heard of sm until after we got Bentley and we got Bentley in November and one day went on the net and ran into this site and a few weeks after getting on the site saw something about sm and out of curiosity started to read and couldn't stop and I knew from day 1 on here after reading the sm that she had it. Then I was advised to get insurance which we did. I waited till the 2 week period was over and a little longer and got it in. We feel we're on a time bomb here so thank you Pat for clarifying that. I probably leave out bits and pieces. I soooooooo appreciate the people that are leaving messages both onsite and in pm and e-mails that are supporting us. It helps me as there is a WHOLE lot more negative than positive. Everybody has their own opinion and I would never ever be so selfish to put Abbey through something just to keep her on this earth for me. That would be downright cruel. All we are doing is trying to give her a chance that she sooooooooooooooo deserves. As I type that I'm bawling like a baby. I pray to dear god that this works but if it doesn't at least we tried and I don't regret one day with Abbey because almost 5 years ago I called the person who we got her from after her first seizure and she would have taken her back but in my heart I know they would have killed her. She came from Slovakia (yep Europe and then to the states) and we were stupid I know--website of cavpups.com another no no but at the time we thought we were doing right. Again, this dog has given us so much joy in her 5 years and if we lose her then thats God's intention.

[Pat]

That is a different paper; I'll scan the paper that I referenced and email that to you, Linda, and I'll post about it later in a new thread for everyone else (I want to type out some verbatim text from the paper, and that will take some time).

In the meantime, I found a good link (which is probably in Karlin's SM info) but I'll put it here for easy reference:

http://www.livs.org/livsnews.htm

This gives a short and fairly easy to understand view of the surgery and background info on SM. There is some text here that addresses questions that have been debated over and over in various forums lately. All in all, a nice summary.

Pat

[Cathy Moon]

Hi, just want to add that Dr. Axlund, who is here in Ohio, used the technique of packing the dog's own fatty tissue to cover and protect the area where bone is removed. That's the technique he used for Charlie's decompression surgery in 2007.

[Karlin]

Using the dog's own tissue isn't a new technique but the 'old' or main decompression technique for doing the surgery, as far as I know -- though some use an artificial tissue called Biocyst for the patch (this covers an area where the bone and then the fibrous tissue supporting the brain is cut thorugh to allow the brain to expand normally). The cranioplasty approach, which uses titanium mesh, is a slightly different form of the surgery and only a handful of people currently do it. Initial results have been quite good but as I have noted a few times, there are only dogs that have had this done going back about 2 years beyond the surgery in the study group so medium to long term results are totally unknown. The mesh is supposed to work better for scar tissue control and is widely used in human surgeries for this purpose. But longer terms results in dogs aren't really known, for this particular surgery.

Also while initially it seemed many or even all dogs having the cranioplasty form of surgery no longer needed medications and that scar tissue didn't form, it is clearer now that it sometimes does form, that many dogs (as with the regular surgery) will remain on medications over a lifetime, and that there can be complications.

The one clear benefit seems to be that syrinxes can actually reduce in size. But it actually isn't all that clear to me from what I have read and heard from many with cranioplasty dogs, whether this makes a difference for the dogs (maybe not if damage has already been done). With the regular surgery, syrinxes tend not to improve but they also tend not to enlarge any further. I know a lot of regular surgery dogs doing perfectly well, and some cranioplasty dogs that need medications to control pain long after the surgery. So I am not all that sure there is much real difference in results.

When some of the longer term data from the cranioplasty approach gets written up it will be really helpful to start to compare. But even then there's really no formal studies of how cavaliers with the regular surgery do over time. Clare Rusbridge has written up an informal comparison between a group of surgery dogs and a group of medication-only dogs. That paper is summarised on my www.smcavalier.com site.

Some dogs do really well after either of the surgeries; some gradually decline a bit, some do poorly in the immediate aftermath... there are all sorts of responses. For some dogs, particularly younger dogs with serious syrinxes and lots of symptoms, I think surgery is probably the only option for anyone who wants their dog to have much chance of a medium to long term life. But there are many reasons to do or not to do the surgery -- no one should feel they should or that they shouldn't.

The dogs I know of that have had it recover amazingly fast in most cases but I also know of dogs that took many months.

[RodRussell]

Rod - on your listing of neurologists, you have the ones with SM experience highlighted and Auburn isn't one of those so recognized, so we'll want to give you feedback for your site.

Duly noted. Thank you.

[linderbelle]

Thanks Rod. I used your site when looking for a neurologist but didn't see Auburn listed but investigated the best I could and chose Auburn. Dr. Shores told us he personally has done 14 of these in his 1 1/2 years at Auburn (I went jeez that isn't very many) and all have been successful. I do not know how many the other doctors there have done. My husband also spoke with the head neurologist but never asked that question. We feel we are on a time bomb here and its ripping my heart out. I don't know who is in worse shape--me or Abbey. Abbey has been misdiagnosed for probably about 2 years. She was put on steroids for allergies. When I started to read all this stuff on here about sm I decided for me to completely take her off of everything and wham were her symptoms intensified. They were bad enough as it was before taking off the med but almost unbearable for me after. Course I'm feeling alot of things these days--my dog has suffered for a long time because vets don't know anything about this which I can't understand because when you google cavalier and health there are two things that automatically show up. Now I had never googled that but I would think a vet would but apparently they don't.

Abbey has most of the symptoms:

scratching
air scratching
licking paws constantly
not screaming I would call it but distress
scoliosis
head tilt
seizures but very few--had first one 2 weeks after we got her as a puppy--have maybe seen about 7 of them and can't even remember the last one I saw.

I think you get the idea. We really don't feel we have much choice here but to do surgery. Like Pat said we don't have the option of watching to see where it goes. Where it goes next is probably falling over etc.

Sometimes I think I love this dog too much if thats possible. My daughter-in-law told me yesterday that everybody she tells this story too is amazed that we even did the mri. Everybody thinks --its a "dog".

I know I'm rambling and probably on a pity party right now--had a bad night--woke up at 4:30 a.m. to Abbey licking and scratching and distressed and couldn't give her the gabapentin for another 90 mins and then it takes time to take effect. Now she is asleep . Seems like she's either drugged or doing the symptoms but we've been told by the neuro that it sometimes takes 2 weeks for the meds to really stabilize etc.

[Karlin]

If she is distressed I'd just give her the gabapentin. To be honest the dogs on this drug take a very wide range of doses and 90 minutes or so difference also isn;t going to make much difference. I sometimes gave Leo half again as much a dose for example if the weather is changeable as his symptoms are worse. If the existing regime isn't preventing distress and pain then talk to the neurologist about adding something or increasing the dose. Many people find gabapentin alone is not adequate. Many of us give a CSF inhibitor as well -- different ones work for different dogs. Also if you are waiting for surgery and have a distressed dog I'd ask about putting her back on steroids as they will likely give far more relief. Hopefully you can find a good approach to keep her comfortable. It is a nightmarish condition to deal with as it is so unpredictable.

14 surgeries is a fair number. No one has done huge numbers.

Personally, for what it is worth, I would have no hesitation in opting for surgery in your case. I continually re-evaluate Leo and Lily -- I may reach the point where I decide on decompression for Leo.

[linderbelle]

We've got a call in to the neurologist so will see what they say. Hubby is doing it as he understands it alot more than I do and he stays more calm than I do. To be quite blunt I'm literally a basket case. She's my baby and I'm pretty worried to put it mildly.

She is also on omeprzole 5 mg once daily.

Personally, It means ALOT for you to say you wouldn't hesitate for surgery in her case. That is one thing that is so hard--in fact its made me almost want to stay away from the boards and net. Husband yells at me to stay off because it upsets me. People tell me I'm wrong and it makes me cry because I'd do anything for her literally.

Today I am so angry at my ex-vet (she became ex about 10 days ago) that I could drive to her office and scream at her.

You go through so many emotions with something like this and what you need is plain support and POSITIVE. The negative I can do without. Facts yes but it rips me up for somebody to tell me that I'm not thinking this through.

I really do need to stay off the boards and net as I'm going crazy. I just want help for her before its too late and I'm scared that even March 2nd is pushing it.

Thanks Karlin. I needed your words ALOT.