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3cavies
1st March 2011, 03:43 AM
My baby was just diagnosed with SM. In an effort to do the very best I could for her, I got opinions from 2 Neurologists. Now I'm more confused than ever. One wants to treat with Prednisone, Prilosec, and Gabapentin. The other thinks surgery could provide a better result. I have so many questions:

Does the medication actually do anything to repair or stop the progression of SM or does it only treat the symptoms?

If we try the medication, will it reduce the chance of a sucessful surgery the longer we wait?

Right now she isn't showing signs of pain, only scrathing.

I know so many of you are going through this. Your thoughts and/or suggesstions would be so appreciated.

Thank you.

Pat
1st March 2011, 04:24 AM
Sorry, but I don't know your name. I am next door to you in Atlanta, and I've sent you a private message.

Pat

3cavies
1st March 2011, 04:32 AM
Hi Pat,
I tried to reply, but it wouldn't go through. I'll try it again.

Stacy

Pat
1st March 2011, 04:48 AM
Sorry, but I don't know your name. I am next door to you in Atlanta, and I've sent you a private message.


An idea - to take off some of the pressure and stress associated with such a big decision - tell yourself that you are not going to make this decision for XXXX amount of time but that you are going to use that time to become as informed as possible about SM. Then set aside some time when you are calm and read, read, read. There are some excellent sites that will help you to get up to speed on this condition including the SM info site here, UK neurologist Clare Rusbridge's site (I'll get link in a moment), and http://www.cavalierhealth.org. Others here will give you feedback about the decisions that they have made (which may confuse you even more!), but remember that you must decide what is right in your specific situation. As you learn more, I think it will become more clear to you which path to follow. And remember that you always have the option to change your mind as you learn more and as more facts about your girl emerge or as her situation changes. I'm assuming that you didn't know a lot about SM until your girl was diagnosed, and it appears that you don't have to make any immediate decision as your girl's symptoms are fairly mild. And now I'll try to empty my inbox as I see it is full!

Pat

Pat
1st March 2011, 04:58 AM
Ah, okay, now I know who you are!

I've emptied my inbox (grumble, grumble as I lost an important post on DM that I wanted to keep!) so please try to respond again.

Pat

3cavies
1st March 2011, 05:07 AM
Thanks Pat, You're right, she's not in pain now so I do have some time to make an informed decision. Maggie was our first Cavalier. We got her after falling in love with the breed after we met some friends that had two. I had heard of it but I wasnt as familiar with SM as I should have been. When I first noticed her scratching, I immediately took her to the vet but it was thought to be allergies. We went through changing food, special shampoo, etc. Nothing worked and of course it got worse. It was always worse if she was on lead, or had anything around her neck. (We now use a harness) I finally insisted on the MRI because I knew that was the only way to know and that's where we are now. My vet is wonderful and I've used him for years, he just simply had not had experience with it with any other patients. He is working really closely with one of the Neurologists in Auburn. Thanks again for your help.
Stacy

Pat
1st March 2011, 05:28 AM
OK - just came back and edited out all of my comments so if you were asleep, you missed them!

Obviously, the tide has turned in Alabama (you'll get the joke if you live in the Southeastern US). The orientation seems to have done an about-face. I must ask myself what is going on behind the scenes to have resulted in that abrupt change?

I guess my feeling at the moment is "Go Dawgs!!" (The UGA mascot is a bulldog.)

Pat

Love my Cavaliers
1st March 2011, 01:28 PM
Hi Stacy. I'm so sorry that you've joined the club that no one wants to be in, but you'll get lots of support here. My Riley has SM and she had surgery 2 years and 9 months ago. I was fortunate that both neurologists gave me the same opinion - surgery. If you would like at some time, I can give you my thoughts about my decision making process and talk about the surgery and recovery. For now, I will let you know that for Riley it was the best decision I could have made. She is a new dog and has a new lease on life. She is on daily prednisone and will be for the rest of her life but that's ok with me.

Because Maggie is so mildly affected right now, you have time to really weigh your options as Pat said. Read all you can about it, discuss it with the neurologist you like the best and will be the one you use, and then observe Maggie. You are the one who knows her the best. You will be the one who will notice the subtle changes in her. You willl be the one will know when it might be time to think about adjusting her medication or maybe think about surgery. But through all of this, we will be here for you. Good luck. Let us know how things go with her - as well as your other dogs.

3cavies
1st March 2011, 03:43 PM
Thanks so much Bev. It helps to talk to people who understand and are going through the same thing. I do appreciate your thoughtful words. My best to you and Riley.

anniemac
1st March 2011, 04:10 PM
I am so sorry to hear about Maggie, however, there are several people on here that will be there to support you. I think the hardest part for me when Ella was diagnosed, was deciding whether or not to do surgery. I think it is a really big decision and you want to make sure you find a neurologist you are comfortable with and are well imformed before making a decision on surgery. There are different procedures to help reduce the formation of scar tissue. Ella actually did not have this and developed scar tissue but it was my choice and a chance I knew would happen.

There is a lot of information and you also have time to see if medication helps. It is true that surgery is successful earlier on but that should not be a reason to make a decision until you have time to do some research. I am also in the south (Charlotte NC) and I am glad to see someone else close by. Although to answer Pat, I am a Gamecock fan. If you ever need to talk, I will be there for you. I may not know much but I know what it is like to go through this and having support really helps.

lovecavaliers
1st March 2011, 05:39 PM
Hi Stacy. I am so sorry to hear another Cavalier has this awful illness. I echo everyones advice above. Just wanted to let you know I feel for you and your situation. I also received two very different neuro opinions (one wanted surgery other said meds). My Jack is 2 1/2 years right now, dx'd at 1 1/2 years. How old is Maggie? and did they tell you the size/width of her syrinx ?
Right now I am doing meds for Jack but have not ruled out surgery (I myself am still confused and it's been a year!) Again very very personal decision which way you go.You know what's best for your baby. Please feel free to ask me any questions or just to vent.

best,
Irene

3cavies
1st March 2011, 08:11 PM
Thanks Irene. Sorry to hear about your baby having it as well. I have a "Jack" too:)
Maggie is 3 years old. I dont know the exact size of the syrinx, but I did see the MRI image and there were 2. One large one and 1 smaller. Hope your Jack does well on the medication and they can both avoid surgery.

Blondiemonster
1st March 2011, 11:06 PM
Hello Maggie. I too have a dog with SM. One neuro recommended surgery. the other a wait and see approach. We opted for the second. Until she is still managing, we are not doing the surgery. Her MRI is very bad, her symptoms are not yet too bad. I can tell you that medication however, just masks symptoms, and surgery is generally more succesful when done on the earlier side. However, that doesnt mean surgery cant be succesfully done a bit later as well. What I mean is , it's probabbly not a good idea to wait with surgery until there is a lot of loss of motor function or very severe pain episodes etc.. Surgery is not going to provide a miracle then. But a close monitoring with clinical/pain exams by your neuro every 6 months while taking a wait and see approach is not an irresponsible thing to too.

RodRussell
2nd March 2011, 12:08 AM
... Obviously, the tide has turned in Alabama (you'll get the joke if you live in the Southeastern US). ...

Ugh!

Pat
2nd March 2011, 12:32 AM
YES!!!!!!!! She shoots.....she scores.

Somebody FINALLY got my joke!

Roll Tide.......and I don't even follow sports.

Pat

anniemac
2nd March 2011, 12:53 AM
YES!!!!!!!! She shoots.....she scores.

Somebody FINALLY got my joke!

Roll Tide.......and I don't even follow sports.

Pat

I got it and would comment more but will save it until football season.

We are lucky to have or had several universities in the southern area contribute or have contributed in research. Also rod has a website that lists several board certifed neurologists www.cavaliehealth.org. I think lynn and others have also given great advice.

Give maggie a kiss.



Sent from my Droid using Tapatalk

3cavies
2nd March 2011, 01:04 AM
Pat,
I loved the reference ! and ROLL TIDE ! This was taken on gameday:
http://farm6.static.flickr.com/5014/5490019352_28d172d25e_m.jpg (http://www.flickr.com/photos/60071206@N07/5490019352/)
Photo five (http://www.flickr.com/photos/60071206@N07/5490019352/) by 3cavies (http://www.flickr.com/people/60071206@N07/), on Flickr

anniemac
2nd March 2011, 01:45 AM
Here is my little gamecock

http://184.72.239.143/mu/aefc939b-a121-1d2b.jpghttp://184.72.239.143/mu/aefc939b-a137-7fcb.jpg

Sent from my Droid using Tapatalk

3cavies
2nd March 2011, 01:48 AM
How cute !

Love my Cavaliers
4th March 2011, 04:11 PM
Sorry, no more football references, just a comment on early vs late surgery. I know that the most common medical opinion seems to be that the earlier you do surgery, the better. However, Riley was not diagnosed with SM until she was almost 6 years old. At that point, she had severe imbalance issues and muscle weakness in her rear legs. I don't know the width of her syrinx except that it was throughout 95% of her spinal column and her SM was termed severe and advanced by both neurologists that I took her to. It was also complicated by a large cerebellar cyst. Both neurologists recommended surgery, which she had six weeks before she turned six years old. She had decompression with a titatium mesh implant.

As I mentioned in a previous post, she is doing so remarkably well almost three years post surgery. She will be nine years old this year and I believe she will live quite a bit longer. She will never be normal. She still has lingering neurologic deficits that are uncontrolled by the surgery and the prednisone, but she is my little wonder dog.

So, after this long story, I just wanted to say that Riley had significant neurological damage done to her little system by her SM in the 6 years prior to her surgery that have been so well controlled since then. That's not to say that every dog can wait that long. Riley may indeed have been very lucky. If so, I thank my lucky stars and hers.

Margaret C
4th March 2011, 07:04 PM
Sorry, no more football references,


This Brit did not understand a word of what you were talking about:o


As I mentioned in a previous post, she is doing so remarkably well almost three years post surgery. She will be nine years old this year and I believe she will live quite a bit longer. She will never be normal. She still has lingering neurologic deficits that are uncontrolled by the surgery and the prednisone, but she is my little wonder dog.




The most remarkable little dog ever. Riley gives hope to all of us.

Karlin
5th March 2011, 12:46 PM
How old is Maggie? That would be one element of any decision that I would make, as would the result of the MRI. If the syrinx is quite small, or is long and quite narrow, then I would probably not choose surgery, at least not now, especially if she is an older dog. If the syrinx is wide and especially if it is lopsided and it looks likely to progress, especially if she is younger, then I would be considering surgery.

There is no solid evidence that doing surgery younger improves the dogs chances. some neurologists think this possibly could be the case, but that is a long way from actually doing a study to confirm it.

The difficulty is that different neurologists think differently on this topic as well, so it is hard to get a hard and fast answer. There are some who were very gung ho for surgery, particularly in the US, and there are some who prefer to work with medications. But medications will not reverse the problem although there is some evidence that perhaps CSF inhibitors can slow or stop the development of a syrinx, especially when it is very small.

I have two dogs who have never done more than scratch mildly. One of them I have now had for four years and she has never progressed and her syrinx is quite small. The other is seven and also only scratches. For either of these dogs I would never have considered surgery, and I strongly disagree with the neurologists who say that as soon as you see there is a syrinx, you should do surgery because SM always progresses. It may “always” progress but as with any health condition progression is highly variable and I cannot imagine having put either of these dogs through a very invasive surgery that often has a quite long recovery and potential complications.

I also know of statistics from a study that show over half of dogs over age 5 who had no clinical signs at all scanned with SM. If the condition “always progresses” then for many many dogs it certainly does not progress to a point were it even causes symptoms that would ever warrant removing a piece of the dog's skull. That said, older dogs can always progress.

My own parents are medical people, and they would feel strongly that you don't do surgery until there is a good reason to do surgery, with any condition. with SM, there are many points at which it might be a good reason–but I do not think just the presence of the syrinx and a very mild symptom is the starting point for taking that decision right away.

I stress again that this is my own opinion but it is based on both my own experience with dogs that have not been put through surgery, and knowing many others that are older and either have SM or have not been diagnosed but I would say surely do, where I cannot imagine that surgery would have been a sensible option. The difficulty is–it's a guessing game. And of course there are reasons why people feel they would never do surgery, and those are perfectly valid too, as is the decision that surgery offers the best option and should be done right away. It is such a personal decision and choice.

3cavies
5th March 2011, 04:23 PM
Karlin,
Thank you for your response. It makes sense and seems like a logical approach. It also echos our feelings right now as well. Maggie turned 3 in Feb. She has one syrinx that is quite long, but narrow and one smaller one. The vet we are using (and have for years) is really wonderful. By his own admission, he was not that familiar with SM, but he is working closely with the Neurologist in Auburn concerning Maggie's treatment. They both think treating with meds first is the best option and like you said, it may have progressed as much as it's going to. If that's the case, I can certainly live with the scratching and not put her through the surgery. I think we're all on the same page now. It was just such an emotional thing finding out in the beginning and I've been in panic wanting to make sure that we are doing the right thing for her. This forum is a wonderful resource of support and information. Thanks again.

Karlin
5th March 2011, 05:11 PM
I should clarify that it will almost certainly continue to progress (I have rarely heard of a repeat MROI where nothing has progressed), but that as long as syrinxes are narrow and not lopsided and pushing towards one side of the cord or another, she may well just continue to have mild scratching. It is impossible to say. If she is insured I'd probably in your place, opt for meds and re-MRI in a year or two assuming she is not showing a lot more symptoms.


I know that the most common medical opinion seems to be that the earlier you do surgery, the better.

I'd just stress again that this *isn't* actually common opinion. There are two specialists I can think of who feel this is definitely the case and therefore generally argue for immediate surgery. There are many others who think it is likely the case or could be the but amongst those almost all seem to feel that unless the dog is showing certain clinical signs of pain and/or has a poor MRI, they generally suggest waiting and trying meds rather than immediate surgery.

People may feel they are most persuaded by one or the other of these views. But really there are no answers and I'd always advise people give the most weight to what a neurologist they feel comfortable with says and advises. It is useful to share experiences of this sort but keep in mind we are not speaking as medical experts -- and there is no right answer or often any possibility of knowing the best answer with SM (except IMHO to be honest and know when it is time to let a dog stop suffering and not keep a dog in regular and serious pain alive for our own comfort :flwr:.

I think you have plenty of time right now to consider options.

RodRussell
5th March 2011, 06:35 PM
... Maggie turned 3 in Feb.

Stacy, has the scratching been Maggie's only symptom? When did you first notice her doing it?

3cavies
5th March 2011, 06:46 PM
Hi Rod,
Yes, the scratching is the only symptom. She has shown no signs of pain. I noticed it about a year ago, took her immediately to the vet as I had read about SM. It was so minor that he first thought it could be allergies. We changed food, used special shampoo etc. She then only seemed to do it if she was on lead. During a recent certification test for AAT where she had to be on lead, the scratching was bad. I called the vet and insisted on an MRI. (Looking back, I should have done much sooner). Our vet just had not had experiences with this as we are one of just a few Cavalier patients. Her symptoms are not that bad, My main concern is them progressing to where they would be bad and have her in pain.

Blondiemonster
2nd April 2011, 01:53 AM
The progression will most likely be a slow one and you will be able to keep track of her symptoms and she will tell you when she is not doing well or is getting uncomfortable. It wont be overnight. I agree with the above advice i think u have time... I am doing the same for my girl because i know she will tell me when its time to have her surgery.

Pat
2nd April 2011, 03:36 PM
See the updated thread "Medication is not working for Maggie."


Pat