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View Full Version : my 11 month old black and tan boy toto just diagnosed with severe onset syringomyelia



milly
14th February 2012, 10:22 PM
hi all,

I have just joined this forum. I have three beautiful dogs, Bailey my 5 year old ruby boy who is a therapy dog and also has had epilepsy since he was two years old; however its controlled very well by medication and he has a very good quality of life. I was very reluctant to get another cavalier after my experience with Bailey and I waited a long time to get Toto. I got him from a very reputable show breeder and was sure I was going to avoid all the heartache of a cavalier with serious health problems. Alas, he is a very unwell dog. He is only 11 months old and is severely affected by SM. According to my vet he has scoliosis of the spine as well as occipital caudal malformation and the outlook is very poor for him. I'm totally devastated at the thought of losing him and dont know how i'm going to face that day when it comes. In the meantime I am going to give him the best life he can have as long as his quality of life is maintained and he can go for a walk, wag his tail and be relatively pain free. my head is in a spin as I only got this news a week ago and i'm still trying to take it all in. I have written to the breeder with a recommendation from my vet that the parents should be mri'd and not be bred in the future. Any advice would be much appreciated. my other dog is Roxy a one year old japanese spitz and I got her at five months from a family who could not keep her any longer. Roxy and Toto are the best of friends and Bailey tolerates the two of them with as much grace as possible!

Milly

sins
15th February 2012, 12:50 AM
Hello Milly and welcome to the site.
I'm sorry for the circumstances which brought you here,but you can be certain of plenty of support and advice for both of your cavaliers.
There are members here who have experience with both epilepsy and SM.
11 months is very young to have to cope with SM.
I presume you have had him Mri scanned and have good veterinary care and insurance?
the best advice I can give,based on my own experience with SM,is to make sure you do a blood test for liver function before putting him on medication and monitor every few months as some meds can be tough on the liver.
There are others here who can give better information of their experiences of medicating and managing younger dogs with the condition.
As for surgical intervention,I chose not to go down that route myself,I didn't feel that there was a hospital with the expertise and experience to carry out the surgery in Ireland and it is a very big undertaking.
It's understandable that your head is in a spin and you need to allow time to absorb the news and research the condition.
Anything we can do to help...just ask!
Sins

Alana
15th February 2012, 08:28 AM
Have you had any reply from the breeder? It seems as though many breeders want to deny that they have SM in their line.

milly
15th February 2012, 10:43 AM
hi Sins,

Thanks for your reply. Fortunately I have a wonderful vet who I trust implicitly. he cares for all my dogs. I do have pet insurance which I took out for all my dogs. Toto has had ongoing health problems since he was six months old. Initially he had hip pain and when x rays were taken it was found that he has 'shallow hip bones'. My vet thought it was Legge Perthe's disease and advised total rest for a period of time. when he was re-xrayed no clinical changes were found and it was ruled out... thought I was at end of health problems .. Then I started to notice Toto's head cocked low to one side and other changes a sort of hopping walk but I kept trying to put this down to his other hip problems. but it started to get worse. when I took him to my vet he just examined him and found torticollis of neck, scoliosis of the back and hyperaesthesia of the neck area which he feels are all consistent with early onset SM. Toto has not had an MRI Scan as my vet feels he can make the diagnosis just from the clinical signs as they are so severe. As I only found out a few days ago he is currently receiving no treatment and I am just wondering which way to go forward? Should I go down medication route, surgery route? My vet feels that Toto has a poor prognosis but we all really love him so much. He is the sweetest dog and he has never as much as growled once in his little life. he loves people and other dogs its just so sad that he has to go through all this.

milly
15th February 2012, 10:45 AM
Hi Alana,

I sent a letter to the breeder yesterday outlining the situation with Toto and included a letter from my vet as well as clinical documentaton; hopefully I will hear something soon. To be honest I am sort of anxious of what kind of reaction I will get. thanks for your reply

milly.

Karlin
15th February 2012, 01:34 PM
Hi Milly -- if you PM me (privately) your phone number I will give you a call. Toto should def be on meds. Scoliosis is common in early onset SM and tends to correct itself. I can tell you about Irish options, UK options, and who to definitely avoid in Ireland... :thmbsup:

Good for you for informing the breeder. Breeders need to start accepting this is a serious issue in the breed -- Irish breeders have been amongst the worst internationally. It is when they realise officially that some of their own dogs are getting this that some -- the truly decent ones -- start to do something. Too many think it isn't their problem. It is every cavalier breeder's problem and will require an international effort to address.

Kathleen
17th February 2012, 10:30 AM
Sorry you're going through this, Milly. Such a pity that there are people still breeding without doing all the necessary health checks. I hope the breeder takes your vet's advice and gets her dogs MRI'd before she allows them to breed again. Good luck with Toto.x

milly
18th February 2012, 10:22 PM
Hi Kathleen,

Thanks for your reply. I wrote to my breeder and got a very speedy response. He expressed great sorrow about Toto and said that he would neuter Toto's sister who he kept from the litter and inform the other owners of Totos siblings of potential health problems as well as notifiying the owner of Toto's father who happens to be high up in the pecking order of the cavalier club ofIireland..... he also said that he will mri the male dog who he intends to breed from in the future. Hopefully breeders will come to realise how much heartache can result from breeding dogs who have not been rigourously health tested and I guess this will be a process for all concerned ....however I do think an awareness is growing that cannot be ignored. In the meantime I am bringing Toto for a consulation with a university vet college to see if he is a suitable candidate for mri/ further treatment or surgery. I have my doubts as he is so severely affected but I've got to give him every chance I can to have a quality of life.

Love my Cavaliers
18th February 2012, 10:57 PM
My breeder was devastated when she found out that Riley, one of my dogs from her, had severe and advanced SM and had been showing signs since I got her at 11 months of age (when the breeder should have known something was amiss). She actually stopped breeding!!

Regarding Riley's behavior, we just put it down to quirky behavior - the head tilt, the knocking herself over when she did the whole body shake, her terrible balance, her hesitance. But as time went by, everything just became magnified until we couldn't ignore it any more or put it down to oxygen deprivation at birth (she almost didn't make it). She was finally diagnosed when she was 5 years old and had surgery when she was almost 6. She is doing so fantastic that I almost can't believe that it is the same dog. She is on daily prednisone and will never be normal, but surgery was the right decision for her. it gave her a better quality of life for whatever life she has left to live. And I am amazed that her surgery was already 3.5 years ago. I am thankful for every day I have with her, because I didn't think I was going to have many more. At this point in time, every one is a gift. I sure hope that you can say the same about Toto in years to come - whether he has surgery or is able to be managed on meds. Good luck with the University vet visit. Let us know what they say.

milly
5th March 2012, 11:20 PM
Since I last posted I have been very active in finding the right course of treatment for Toto. My vet referred me to the veterinary hospital at UCD. There they carried out some preliminary tests on Toto; They found from further x-rays that Toto has a number of fused vertebrae in his neck as well as scoliosis of the spine, but they feel that these anomalies may have been present from birth and only became apparent as he has matured. Despite these findings they feel that these test results do not account for all of his clinical signs and symptoms ( they strongly suspect syringomyelia) and so they have recommended that he have an mri to properly see whats going on. He is scheduled to have his mri on the 14th of March (the mri scanner comes once a month from the UK to UCD) and I am just hoping against hope that its not going to be more bad news .... I will just have to wait and see. In the meantime he is doing well and still able to go for his daily walk and seems happy enough in himself. The vet at UCD said that once the mri is done and a diagnosis has been confirmed (or not) then we can think about what route to go down with Toto with regards to treatment. She felt that medication can be quite effective in many cases and that surgery can often be a radical alternative with no guarantees. Things will be a lot clearer once the mri is done.

Karlin
7th March 2012, 05:33 AM
Thanks so much for the update! That's quite a lot to take in. I am glad he will have an MRI as that will give you a lot more information.

milly
22nd March 2012, 11:03 PM
Thanks so much for the update! That's quite a lot to take in. I am glad he will have an MRI as that will give you a lot more information.

Just to update you on Toto. Toto had his mri last week on wednesday 14th of March in UCD. I received his results on tuesday of this week. Unfortunately Toto does have SM with many malformations of the spine skull and brain. The vet who called me with the results said that Toto is the worst case of syringomyelia that she has ever come across... obviously very upset but not surprised as he was displaying all the symptoms. The options are decompression surgery or medication. The vet from UCD felt that surgery might be too radical an option as Toto is so advanced in the disease already and that it might only put him through a lot of suffering for little results; Hence we are going with the medication route for now and UCD are forwarding their recommendations to my vet so we will see what happens. In the meantime despite everything Toto is still in good form, out for walks, running around the place- its actually hard to believe sometimes that he is so badly affected. He is such a happy friendly little fellow to all he meets both canine and human.

sins
22nd March 2012, 11:17 PM
So sorry to hear this news,we were all keeping fingers crossed for a better result for him.
It's good that he's still in good form and that the team in UCD are fixing up a plan for medication.
When it comes to surgery,there's no clear yes or no answer,many dogs can do well on medication for a very long time and I'm sure your vets will do everything possible for him.
Sins

Karlin
22nd March 2012, 11:43 PM
Do you want to give me a call when you feel ready in the next few days? I am happy to talk more about this -- PM me and let me know. :flwr:

Margaret C
23rd March 2012, 12:54 AM
In the meantime despite everything Toto is still in good form, out for walks, running around the place- its actually hard to believe sometimes that he is so badly affected. He is such a happy friendly little fellow to all he meets both canine and human.

Bless his little heart, this is so typical of a cavalier. Give him a gentle hug from me.

susandavis1
23rd March 2012, 10:23 AM
Sorry to hear that this was not a better result for you. Keeping you in my thoughts, sending gentle hugs to Toto

milly
25th March 2012, 09:58 AM
Thank you all for your kind and comforting words. It has been a bit of an emotional rollercoaster over the past few weeks with Toto and I really still can't take it in that he might not be here for a long time. It really is so sad, I'm probably in denial really as I think somehow it will be fine when of course it wont. However, I just have to move on and enjoy him and spoil him for as long as I can.

mommytoClaire
29th March 2012, 11:21 PM
Giving you a virtual hug. Please tell us more about Toto, how you got him, what are his favorite things to do, etc. I want to know him.

cavalover
30th March 2012, 01:47 AM
So sorry to hear about Toto. Thanks for the updates. I have been reading and thinking about you and Toto over the past month. He sounds like a very special and loving dog.

milly
30th March 2012, 01:19 PM
Giving you a virtual hug. Please tell us more about Toto, how you got him, what are his favorite things to do, etc. I want to know him.

Toto is a really funny little character. He has the most adorable little face, he really would melt your heart to look at him. I have two other dogs, Bailey a 5 year old ruby boy and Roxy a japaneze spitz girl. Roxy and Toto are best friends and they spend all day playing together. Their favourite thing to do is sit on the back of my sofa that faces on to the road outside and watch the world passing by. They also love to play fight and spend hours biting each others ears! So funny to watch. They all love to go for a walk and Toto just loves other dogs. He starts whining if he sees another dog as if to say please can I go and say hello and play. He's also very brave and shows no fear of any dog no matter how big. He is also the boss of the other two and sometimes when I feed him he plays this game where he wont eat his food but just sits guarding it and growls at the other two to keep their distance!! but he is a very gentle soul and loves to come for a cuddle when I sit down, although I know that its not very comfortable for him as he is in pain and so twisted, so I try not to pet him too much or if I do I just try to do it very gently so it doesn't make him uncomfortable. As I speak the three of them are lying on the sofa fast asleep and Toto is perching like a little bird on the back of it. Oh to be a dog...

paula12
10th May 2012, 03:28 AM
I am so sorry to hear about Totos diagnosis. Bonnie was diagnosed with SM at 9 months and we ended up going down the medication road. Starting with Prednisolone only and then after a couple of years had to add Gabapentin into the equation these seemed to control her symptoms reasonably well, though she had good days and bad days but through it all maintained her happy disposition and in true Cavalier fashion she never went off her food. We lost her at 3 yrs though due to unrelated reason to her SM though I do believe that the Prednisolone affected her ability to fight infection after major surgery which was the cause of us having to euthanize.

Sounds like Toto is a real character so my suggestion is just enjoy every moment you have with him and hopefully the meds give him quality of life cause Cavaliers are such joys to have inyour life

daffymum
10th May 2012, 11:56 PM
I am so sorry to hear about Toto, I have a black & tan too, all cavaliers are so adorable and its heartbreaking when I hear one has sm or is ill. My sm affected cavalier has good days and some not so good days with scratching at the flank but he loves his food all the same. I hope Toto's pain can be controlled with meds and he can enjoy his life with you as long as possible. I heard in the nearby park that a cavalier has died from lung worms from eating a snail. We need to take good care of and cherish our cavaliers very day.

nicolse
12th May 2012, 01:50 PM
My Tobey was diagnosed in February (occipital caudal malformation) and operated on February 13. He is doing extremely well. I struggled with the MRI because I had to know what I would do with the information and when I was certain I would proceed with surgery, I had the MRI and Tobey had the surgery. Here in the US we have a wonderful neuro doctor at Tufts Cummings Foster Animal Hospital. I know I'm blessed to be able to proceed with the surgery. There is a credit card "Care Credit" that allows for zero interest for six months. Google it and see if it's available where you are.