my 11 month old black and tan boy toto just diagnosed with severe onset syringomyelia

[milly]

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]

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]

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]

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]

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]

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...

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]

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]

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]

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]

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.