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Results are back .... pretty severe malformation and syrinx

GraciesMom

Well-known member
I knew in my heart it was SM but was shocked how bad. It is shocking that Gracie has not been screaming all day long! Gracie has a fairly substantial malformation and one huge syrinx that runs from skull down much of her spine. It varies in width but is taking up nearly half the spinal canal in places. We start her on meds tomorrow which include: prednisone, tramadol and gabapentin. I do have questions as I do not want to put Gracie through major surgery until I am clear enough on its ability to give her a decent quality of life. First, when a young dog (14 months) has a major compression with a large dominant syrinx, what have we seen in terms of impact of surgery? I would be fine if her current level of scratching and discomfort stayed about the same, but sounds like it may well get worse over time even with meds and surgery?Second, what have those who used a mesh implant found in terms of positive/negative impact? Some are concerned that the implants can lead to infection and not sure they are really that effective in containing the problem. But others feel that it is very effective in terms of limiting formation of more problems?Third, what can we expect as worst side effects of the meds above? I am most concerned about prednisone long term, but not as familiar with the other two. So any experiences with these is appreciated.Lots to decide in the next few days. I know we must decide on surgery soon given severity of situation. I must admit that we may well decide not to have surgery and just give her the best life we can until we know it is time to let her go. The severity of the syrinx is pretty disheartening.
 
I'm so sorry Debra, but you knew it in your heart. I can only give you my experience with Riley which has been a dream experience. Riley was diagnosed with severe and advanced SM 3+ years ago with a syrinx that covered more than 95% of her spine. After a second opinion, we opted for suregery even thought she was probably at the upper age limit for surgery (she was almost 6). She was treated before surgery with gabapentin and prednisone which had zero effect on her symptoms. In June of 2008 she had decompression surgery with the titanium mesh implant. After surgery, it took several months to hit on the right medication for her which was just 5 mg prednisone a day. She has been on that now for more than 3 years. The only side effects that I have seen are a loss of hair on her belly and her tail and some dry skin. I give her daily salmon oil. She also take a liver supplement daily and has her liver enzymes checked every 4 months.

She has had no problems with the mesh implant. She is a happy dog. She runs, she hunts in my yard, she catches chipmunks, she loves to go on walks. She does have weakness in her rear legs and can't jump well so I have stairs for her to get up on my bed and one of her favorite chairs. Our sofa is low so she can jump onto that. Her vestibular system was damaged before surgery and while the prednisone keeps it in check most of the time, she still has lingering balance issues. Her head tilt is still there, but not as severe as it used to be. She will never be a normal dog, but she is my miracle dog, and I never expected her to be alive and in as good shape as she is today.

For Riley, surgery was the right and only decision for a longer and better quality life. That doesn't mean it is right or wrong for Gracie or for any other dog. I've got to run, but I'll write more if you have more questions that I can answer later. Best of luck to you. Gracie will get the best care because you are her mom.
 
I am so sorry that the diagnosis is what you feared. At least now you know, and can move forward with meds and proper care. Have you told her breeder? (I can't remember if she was a rescue or what)
 
I'm so sorry you got this diagnosis. I have no experience with SM so I can't offer any advice. I'm crying as I type this knowing that you and Gracie are suffering. Whatever decision you decide to make on the treatment will be the right one. Sydney and I are sending you lots of prayers and hugs. Love you both.
 
Love you all....

I did tell her breeder... Some good and not some not so good reactions. He knows now that he can't breed her sister. He told that he already had stopped breeding another line 2 years ago. He seemed genuinely upset but he is a JUDGE as well as a breeder and I do not know how much I trust him. He did not offer any help or support with expenses, nor did he offer helping us get another dog in the future. Of course, I would not want one from him anyway. He did say...and I agree... That CM/SM could very well end this breed. Unless breeders take drastic action, I fear it could happen.I appreciate the info from Love My Cavaliers and others as this will help us make a decision on what to do.
 
I'm sorry to hear those results :( At least she is getting the treatment she needs. I'm right there with you trying to figure out what is best... surgery or no surgery.

I have no experience with prednisone or tramadol. Mine are managed with either Lyrica or gabapentin + omeprazole. They all seem to be managed fairly well with the exception of the occasional "bad day". I know many members on here do well with prednisone but my neurologist seems to be against it until it is a last resort icon_nwunsure He is concerned about the long term side effects of taking it.

I know JUST gabapentin + omeprazole have been a miracle drug for poor Blitz. It has given him great relief despite having a syrinx that is so wide it takes up to 90% of his spinal cord in some places.

As far as gabapentin I was not told of any "long term side effects". Sorry I'm not much help but wanted to know we are thinking about you guys! :hug: I know how much it sucks.
 
That is so scary seeing how mild to non-existent Gracie's symptoms have been to how large her syrinx is :( I am so sorry, but at least you know now and are doing all you can to keep her comfortable. Remember Gracie doesn't know anything is wrong, dogs live in the moment.
 
This sounds so much like my experience with Scarlett... severe malformation and a HUGE syrinx but relatively mild symptoms. I'm sorry to hear this and I know how you feel.... that even though you knew it, it was shocking to hear how bad it actually is and overwhelming when trying to decide what to do. I am curious to hear everyone's opinions on the surgery. Scarlett has been well-managed on her meds and is already almost 5 years old. I decided to manage her medically due, in part, to her age but if she were much younger, I might have thought more seriously about the surgery.

I've had her on Gabapentin, Omeprazole, Previcox and, if needed, Tramadol for about a year and a half. Her bloodwork has always come back perfect. I am not sure about the Pred but that is something we may use in the future.

Good luck! I just went through this same exact scenario 4 days ago. Pat gave me the best advice when she said... Just remember that she is the same girl she was yesterday.
 
Already such good things to think about...

I am really curious now why the neuro prescribed what he did. Why no omeprazole? Why both gabapentin and tramadol if she is not yet in that much pain? They seem to do very similar things. Why a fairly high dosage of predisone? I will ask him but curious as to your thought on this. I hope Pat is here to weigh in.

It is unclear to me Reptigirl if Gracie's young age makes her more of a candidate for successful surgery or not. The neuro said yes and no. Her youth is more likely to make it easier to recover, but he said the potential for ongoing damage from syrinx or scar tissue may be higher due to having this so young. That last part is confusing to me and I need to get clarification.
 
Our neuro had us do an NSAID (Previcox, Rimadyl etc) along with the Gabapentin. The Omeprazole is thought to reduce the production of CSF, I believe. I would ask him about adding something like that, bc I think it can be preventative.
 
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So sorry for Gracie.

I am so sorry Debra that you received such devastating news about little Gracie. I have no advice to offer about SM as thankfully Bubbles does not suffer from this heartbreaking condition. My heart goes out to everyone on the board who is living with SM. Cavaliers are the most beautiful and loving dogs on the planet and I am deeply saddened that these wonderful pets have to suffer such pain and that the breed is in danger. You will get some valuable advice in the coming days from owners of cavaliers with SM and I'm sure you will make the right decision for Gracie. In the meantime, give her a hug from me.
 
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I'm so sorry to hear about Gracie's MRI result. Corey too has a sever case of SM. We opted for surgery a year ago when he was 2 1/2 yo and last month we did follow up MRI. The result is mix. The good thing is there is no new syrinxes and the existing syrinxes remain the same in size. On the other hand the neuro said scar tissue may have developed but he also mentioned that this is pretty normal. I think the surgery somewhat has been helping to stop the syrinxes' progression on corey, should this continue in the future? we don't know and neither does the neurologist. I agree with Bev that the surgery doesn't mean it's right or wrong for Gracie and any other dogs. If you have any other questions feel free to PM me and I live in NC too :). Hugs to you both :hug:
 
You know i already sent you a long private message. But I wanted to add something important.
We did a follow up MRI after 6 months from the first one and there was no progression, according to Dr. West.
I don't know if this was a coincedence or due to the omeprazole, but either way; it's possible.
Not sure what the result would be if we MRI'd again in a year but it sure would be interesting too see....
 
You know i already sent you a long private message. But I wanted to add something important.
We did a follow up MRI after 6 months from the first one and there was no progression, according to Dr. West.
I don't know if this was a coincedence or due to the omeprazole, but either way; it's possible.
Not sure what the result would be if we MRI'd again in a year but it sure would be interesting too see....

You are treating with meds and decided against the surgery?
 
So much to think about...

I continue to be mystified why we were not prescribed omeprazole.... Do the other meds on the list he gave us do the same thing? Everyone so far seems to to feel it has been very helpful. Got to ask that for sure on Monday. I think the followup MRIs are very interesting.... Wish there was a major study tracking those results for those getting various treatments. big hugs to all for your support and sharing your own experiences. Gotta PM gyoselyn and find out where she lives!
 
I continue to be mystified why we were not prescribed omeprazole.... Do the other meds on the list he gave us do the same thing? Everyone so far seems to to feel it has been very helpful. Got to ask that for sure on Monday. I think the followup MRIs are very interesting.... Wish there was a major study tracking those results for those getting various treatments. big hugs to all for your support and sharing your own experiences. Gotta PM gyoselyn and find out where she lives!

The Gabapentin and Tramadol are for the pain. The pred suppresses the immune system.
 
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Debra, I was thinking about Gracie the whole time I was out for dinner with my friends and was wondering how you would feel about getting a second opinion on Gracie's MRI. I know it just really put my mind at ease to know that two neurologists said the exact same thing about Riley's diagnosis and prognosis and whether they would recommend surgery (both said 100%). Now, if you get conflicting opinions, that can be problematic. But, you could always send a copy of the disc over to Clare Rusbridge to take a look at. I believe she will do that - maybe for a fee though.


How are you doing? I know I cried a lot when I got Riley's diagnosis. I had just found out about SM that day and then found out she needed surgery and was sure that surgery was going to shorten her life if it didn't kill her (She had problems coming out of the MRI anesthesia). I hope you have some support for yourself other than your sweet little dog to hold.


I agree with Reptigirl that I don't think there are any long term side effects with gabapentin. I myself have been on it for over two years for migraine prevention and my neurologist calls it a very safe drug.

Keep in mind throughout this whole decision making process that you are going to do the best for Gracie given the best information that you have at the time and the best resources that you have available to you. You could have two dogs with identical MRIs and two owners who would choose different treatment options based on a multitude of reasons that no one else is privy to. We are here to listen, to share our stories, and to give you support no matter which route (medical or surgical) you decide to take because we know that you will have made that decision based on your love for Gracie and what you feel is best for her at this time.
 
I agree with Bev-- what you choose to do here is such a personal decision and you have to do what you feel is right for your dog. But, I know what a hard decision it is and one that I wish we didn't have to make. You could also contact Dr. Schubert down at UF to see if he would give you a second opinion based on the MRI- he has a big interest in our Cavaliers and SM and sees a lot of them.
 
Goodness I was hoping for a better result. I am so very sorry. I hope that what ever you choose to do that you can keep Gracie's symptoms managed. Many Many hugs to both of you:hug:
Becky
 
You are treating with meds and decided against the surgery?

I am still not sure holly. Its been a year and i am still deciding... She is now 4 and 4 months and is doing allright on meds. Unless there is muscle weakness or a very serious rapud decline i am tempted to ride it out. If no surgery means she will maybe be 8 instead of 10 years old i wouldnt not want to put her through surgery... I dont even know if the surgery will help. If there was a guarantee it would be different... But i could change my mind any given moment. There is never a guarantee either way and we dont know how ling our fur babies will be around for...
 
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