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kloey
7th December 2009, 03:07 AM
Hello to all. I'm new to the board but I wanted to talk a little about SM. I just lost my sweet B&T cav Ollie to SM after a long and hard fought battle. Ollie exhibited sign of SM, although my vets didn't know what it was and misdiagnosed it for six months until I did the research and discovered what I though might be his problem. I contacted the Long Island Vet Hospital in Plainview NY ( I live in South Florida) and they agreed to take Ollie in to their grant program. We flew to NY and he had MRI, CT, Baer, tomography, sonogram and other tests. Unfortunately it came back that Ollie had SM with Sphrinx in the cervical and dorsal area of his spine. I elected to give him the best chance possible and left him there for the newest type of surgery, cranioplasty, where they removed a section of his skull, replaced it with a titanium mesh screen and secured it with titanium screws. Two weeks later I returned to pick up my boy and bring him home. He was on Gabaphentin 3X a day, Tramadol 2X a day and predisone. For two months he seemed to be somewhat the little cav I remembered but slowely he started showing more and more new symptoms and the symptoms were more severe. Face rubbing, head shaking, seizure like activity where his back feet scratched and thumped on the floor as he went in semi circles, yelping, air licking, biting his foot and hiding after attacks. After seven months of medication changes, additions and five rounds of predisone ( at first it seemed like a miracle drug as Ollie seemed back to his old self ) but with each additional dose the effect was less and less effective. After seven months of watching Ollie in obvious pain I decided I had to release him from his pain and put him down. It was the worst day of my life and the tears have not stopped. I am working with breeders around the country who have called me, vets who I am informing about SM and the girl, Sandy Smith, who wrote the book "For the Love of Ollie" to promote awareness of SM within the vet world and trying to get a low cost screening MRI etc in every state for breeders as well as owners. If we can get breeders to get their bitches and studs MRI'd and removed from the breeding gene pool we might have a chanc at saving this beloved breed. if we don't we are going to loose them to this terrible genetic illness that is stricking more than 50% of all cavaliers today. If you are interested in finding out what you can do to spread the word and help to get the low cost screening available throughout the country please let me know. I'm not asking for money just that you would want to get the information and pass it along and write letters to the vet hospitals, especially the ones affiliated with Universities to say you would be intersted in low cost screening of cavaliers. If enough people let them know they would use the service then maybe we have a chance of getting a program going that everyone could use. I don't want my beloved 3 1/2 year old Ollie to have died in vain. Thanks for reading this.
Karen 239-454-4854. South West Florida

pippa
7th December 2009, 11:55 AM
So sorry :(

Rumor
7th December 2009, 12:15 PM
:( Sorry to hear about Ollie's struggles.

I sent an email the other day to Purdue University Veterinary Hospital & asked how much they know about SM & reduced MRI's. I told them about what Ohio State University is now doing for Cavaliers. I didn't think I'd get a reply but they did send me some kind of form letter about going to my Vet and getting a referral then I could have a consult for $500 & if an MRI was needed another $2500. That's just for 1 dog. I have 3 so I appreciate what you are doing in Ollie's name. I bought the book "For the Love of Ollie" by Sandy Smith & have had everybody I know read it.

Margaret C
7th December 2009, 05:38 PM
I receive so many phone calls from people with SM dogs of all ages. Some are breeders, some are pet owners.
Please, if you are breeding cavaliers read Karen's post. How can anyone who loves their dogs not do everything possible to avoid inflicting such suffering on a dog and the owner.



For two months he seemed to be somewhat the little cav I remembered but slowely he started showing more and more new symptoms and the symptoms were more severe. Face rubbing, head shaking, seizure like activity where his back feet scratched and thumped on the floor as he went in semi circles, yelping, air licking, biting his foot and hiding after attacks. After seven months of medication changes, additions and five rounds of predisone ( at first it seemed like a miracle drug as Ollie seemed back to his old self ) but with each additional dose the effect was less and less effective. After seven months of watching Ollie in obvious pain I decided I had to release him from his pain and put him down. It was the worst day of my life and the tears have not stopped.

I would like to think that every cavalier club magazine, and every cavalier forum would publish the excerpt above.
That suffering is what denial, apathy and the reluctance to help the researchers perpetuates.



I am working with breeders around the country who have called me, vets who I am informing about SM and the girl, Sandy Smith, who wrote the book "For the Love of Ollie" to promote awareness of SM within the vet world and trying to get a low cost screening MRI etc in every state for breeders as well as owners. If we can get breeders to get their bitches and studs MRI'd and removed from the breeding gene pool we might have a chanc at saving this beloved breed. if we don't we are going to loose them to this terrible genetic illness that is stricking more than 50% of all cavaliers today. If you are interested in finding out what you can do to spread the word and help to get the low cost screening available throughout the country please let me know. I'm not asking for money just that you would want to get the information and pass it along and write letters to the vet hospitals, especially the ones affiliated with Universities to say you would be intersted in low cost screening of cavaliers. If enough people let them know they would use the service then maybe we have a chance of getting a program going that everyone could use. I don't want my beloved 3 1/2 year old Ollie to have died in vain. Thanks for reading this.
Karen 239-454-4854. South West Florida

Karen, Ollie was lucky to have such a loving owner as you and I am so sorry you lost him to such a dreadful illness.
When I had to put Monty to sleep, I felt the same as you, I could not stay silent.

The most important thing you can do is arrange for low cost MRIs to be available to USA breeders. You will meet opposition and you'll need to be determined and stay focused.
Don't let the insults, rejection and jeers stop you.

There are lots of good caring breeders out there, some have already stood up to be counted, others just need to pluck up their courage and defy the bullies who dominate the show world in so many countries.

Bet
7th December 2009, 05:50 PM
kloey,

You sure have left me with such a Lump in my Throat after reading about Ollie.

What I do wonder is why is it only from Cavalier Pet Owners that we about those Heart Breaking cases of the suffering of Cavaliers from SM ,I know Margaret knows all about it ,but there must must be other Cavalier Breeders who have had Cavaliers dying from SM.

Do they not want to discuss the Problem. ?

All I seem to read about is the damage Jemima Harrison and her Pedigree Dogs Exposed TV Film did to our Cavalier Breed.

Best of Luck kloey in doing what you are doing.

There are many of us Cavalier Pet Owners behind you. You are not alone.

Wagtails
7th December 2009, 05:50 PM
Margaret, your post was so heartfelt that we can all feel your pain too!

Stories like Karen's bring us all up sharp with the reality of this dreadful disease for some dogs and their owners.

I agree that her story needs to be told in as many places as we can all think of, both to raise awareness and to ensure that these beautiful little dogs are not suffering and dying in vain :(

RIP little Ollie and healing thoughts to you too Karen. Good luck with your efforts and do keep us posted how you get on.

Jay
8th December 2009, 04:47 AM
Kloey, please accept my heartfelt condolences for you loss of your beloved Ollie.

I applaud your efforts to try to make his life comfortable and as pain free as possible. I also applaud your efforts to help combat this very scary disorder that plagues our wonderful breed.

I am sure that it was a very difficult and heartbreaking time for you and your family. 3 1/2 years was way too young. I pray we get answers soon.

Peace,
J.

Karlin
8th December 2009, 12:31 PM
I'm so sorry, Kloey. I fully support your efforts to raise awareness and to try and convince facilities to get involved in offering low cost screening.

I suggest for anyone who wishes to get involved, to do these simple things -- click to download and then print out these documents for your vets and any vets in your region. Most vets still are sadly unaware of SM and the high rate of incidence in this breed. Dogs could receive needed treatment that might save their lives, and definitely get relief for their pain, much earlier if vets, all cavalier pet owners and breeders were better informed.

Here are the documents:

Dr Clare Rusbridge's basic guide to CM/SM (http://www.veterinary-neurologist.co.uk/syringomyelia/docs/cmsmeng.pdf)

Dr Rusbridge's recommended treatment programme for CM/SM (http://www.veterinary-neurologist.co.uk/syringomyelia/docs/treatalgo.pdf)

Breeding guidelines (http://www.veterinary-neurologist.co.uk/syringomyelia/docs/breedguide.pdf) (it would help enormously if vets could make sure any breeders or prospective breeders were aware of these)

SM symptoms document (http://sm.cavaliertalk.com/SM%20Symptoms310705.doc)

Anyone wanting to hear a basic lecture by Dr Rusbridge on SM can listen here:

http://sm.cavaliertalk.com/rusbridge.mp3

Karlin
8th December 2009, 12:36 PM
Sandy Smith has raised significant funds towards research through the sale of her For the Love of Ollie book. You can read more, and buy a copy of this touching book, here:

http://www.fortheloveofollie.com/

Most recently a major donation from Sandy helped many breeders in the Canadian CKCS Club get low cost MRI screening for their breeding dogs, scans that also went towards the Canadian hunt for the CM/SM genes. I think many people remain unaware of how much pet owners like Sandy have contributed to breeder and club efforts to get dogs scanned at low cost. :)

ppotterfield
8th December 2009, 03:47 PM
I lie awake at night sometimes with our BudBud sleeping next to me and wonder what is he thinking, what pain does he feel, does he understand we are trying to help him? We are so far blessed that BudBud has very mild symptoms and we are not faced with major decisions like whether to have decompression surgery or the ultimate decision of whether it is time to say good-bye. Most days I do not dwell on it and we live our lives with BudBud as we have with all our dogs -- enjoying their company, laughing with and at them, playing ball, walks to the Park, trips to the house in the country, cuddles in the evening. Sometimes though I look at our beautiful boy and my eyes fill with tears. I know there are good breeders and folks trying to do the right thing -- I want to support those folks and help educate the public -- and not let anger at those who seem to be indifferent or even hostile consume me.

At this time of year I remember Cathy Moon's Charlie whom she brought all the way from California to her home in Ohio to live his last months in her loving home. We need to tell the stories of the Charlies and Ollies and make people understand that these are not isolated cases --but representative of what is happening to far too many in this wonderful breed.

Bless those of you who are working in the trenches. Karen, I am overcommitted to major volunteer projects right now but I can help in small ways so do not hesitate to keep me in the loop. I can be reached at ppotterfield@bowlesrice.com. Bless you for your love of your Ollie.

Sarenna
8th December 2009, 04:12 PM
Kloey I am so sorry for you and your loss of Ollie, he was so lucky to have you.

I fully support your efforts to raise awareness of this terrible condition. Here low cost MRI scans are available so we are very lucky, but still there is no knowledge of this problem with vets and that makes diagnosis so slow, leaving months or even years of suffering when something could be done to help.

Good luck and please do keep us posted on how you get on.

Carol Fowler
8th December 2009, 04:40 PM
Kloey

I am so sorry for your loss.

I hope you can take some very small comfort from the recent press release from the Dog Breeding Stakeholder Group in the UK which has signed up to three overarching welfare principles:

every dog should be born with the best possible chance of living a healthy and happy life, well suited to its intended lifestyle
all those who breed dogs should prioritise health, welfare and temperament over appearance when choosing which animals to breed, in order to protect the welfare of both the parents and offspring
all those who benefit from dogs have a collective responsibilty to work together to protect dog welfare
This is the point we have reached in the UK. On 10 December 'Pedigree Dogs Exposed' will be broadcast in the US. Let's hope the impact in the US will result in similar progress towards protecting dogs and their owners from the suffering caused by genetic diseases.

Carol

kloey
8th December 2009, 04:55 PM
Again thanks. It's so wonderful to hear Cav owners want to talk about and learn more about SM and hopefully ways we can work to make screening and awareness of symptoms more available. I have been contacted by some caring breeders who not only want more information but want to help get low cost screening available in their areas so they can have their breeding lines tested for SM and PSOM. It's a start and all we can take is baby steps. I am willing to continue working for as long as it takes to make sure Cavaliers become a healthy breed. This is the only way we can ever achieve that as it is known that SM gets worse with each generation of effected dogs. That means that if the bitch or stud are effected with a level 2 or 3 MRI scan the chance that at leat one or more of their pups will be positive for SM and show symptoms of herniation causing noticible symptoms grows higher and higher. It will have to be stopped at the breeding level and will take generations of scanned dogs, and most importantly the refusal of breeders to breed their effected dogs, for this disease to become a rariety instead of a possibility. Hopefully I will be able to meet with the neurologists at the University of Gainsville FL to talk about setting aside a few days four times a year for reduced cost MRI for Cavaliers and breeders of Cavaliers. The Long Island Veterinary Specialists at Plainview NY, Dr Marino, does already have a full battery of tests for dogs referred by their vets showing symptoms of possible SM and for breeders of healthy Cavaliers who want to have their stock scanned. The cost is just $500 including anestesia per dog which I feel is reasonable. They are especially interested in the dogs lineage so if you have it make sure you bring it as this helps with the studies being done on the gene pool. If you are interested in going there the number to call is Maggie Byrnes, 516-501-1700 ext 324. This is where I took Ollie and they were wonderful. After screening they talk with you regarding the findings and give you options from meds to surgery.They also offer free testing 6 months after surgery and a year after surgery if you are able to get your dog there. There is a dog friendly hotel within five minutes of the hospital that charges appros $144.00 a night. The Residence Inn Plainview, NY. This is a start. If you are close enough by car then this is the place to go. I was able to fly Ollie there as he was a licensed therapy and service dog and he flew free on my lap with Southwest Airlines. There is hope and I will work very hard to find other places willing to do this service for this reduced cost or less. The more dogs we can get scheduled to be screened the cheeper the cost will be as the machines are expensive and the more they are used the less the cost should be. I will continue to keep you all informed. Thanks for your support. And, if you got your dog from a breeder please please call the breeder, tell them about your dog especially if you have a positive test result to share. They may not want to listen but maybe, just maybe they will and want to take part in having their breeding dogs screened. It's up to all of us to do our part. The documentary,Pedigree dogs exposed is being aired in the US on the 9 or 10th of this month. It will be hard to watch but I think important for breeders and owners/potential owners of any purbred especially KCC.
Karen "AKA Kloey"

kloey
8th December 2009, 04:58 PM
Do you know what time and which channel will be broadcasting the Pedigree dogs exposed documentary? I am going to purchase the DVD, which is available for $12.95 but would like to see it and let everyone on this board know when to tune in.

Carol Fowler
8th December 2009, 06:24 PM
'Pedigree dogs Exposed'

BBC America

Thursday December 10, 8.00pm (ET)

Carol

kloey
8th December 2009, 06:50 PM
I highly recommend you all purchase a copy of " For The Love Of Ollie" written by Sandy Smith. The proceeds go towards study of SM and low cost MRI but even more importantly the book is a wonderful insight into this terrible illness and what to look for etc. The link is on the reply a few threads down.Karen

kloey
8th December 2009, 11:07 PM
The program will be aired on Wednesday Dec 9th on the Today Show 7:30 AM. If you can't watch just google BBC Pedigree Dogs Exposed and Wikipedia and it will come up on your computer and you will have the ability to view the entire program on line. It's hard to watch but it is informative expecially for anyone looking to purchase a cavalier and all breeders. Karen

kloey
8th December 2009, 11:12 PM
Carol, It is being aired in the US on Wednesday Dec 9th on the today show at 7:30 AM. It can be seen by googling Pedigree Dogs Exposed and wikipedia comes up and you can view the entire show on your computer. I did and it was really hard to watch but certainly is a must. I want another cavalier but Im petrified about buying one as I do not know how to go about it with all the problems. Seems getting one is a crap shoot. About all you can do is make sure the breeder is hones and upfront about the MVD and SM and has a return policy for three years for either. It's hard to say you will give up your dog after three years but if I get another I wil have it MRI's in NY when it is about a 1 1/2 even if it shows no symptems. earlier if it shows symptoms as Ollie did. He exhibited symptoms that I now know to look for when he was just 6 or 8 months even earlier.
Karen

Karlin
8th December 2009, 11:37 PM
Karen, the show itself is not being aired then -- it is being discussed on the Today Show tomorrow at 7:30 am in advance of the full documentary's broadcast on BBC America, 8pm ET/PT, 7pm CT, Thursday night. :thmbsup:

http://www.bbcamerica.com/content/292/pedigree-dogs-exposed.jsp

Also: Carol is the Carol Fowler in the documentary (and Margaret C is the Margaret with the Cavalier Club, also in the documentary). :)

Bet
9th December 2009, 09:05 AM
Could I just chime in to say what a Debt of Gratitude is owed by the Cavalier World, to Carol,Margaret, Karlin , and Jemima Harrison.

If it had'nt been for those Four Ladies, the Health of our Cavalier Breed would never have had any notice taken about it..

kloey
9th December 2009, 05:58 PM
Thanks. I had gotten a message from Sandy Smith saying it was to be aired on Wed but I realize she was mistaken. As I said, I have already viewed the entire documentary on line at wikipedia. Very hard to watch but very true to what I experienced with Olie. I just never let him get as bad as the dogs shown. I can't understand how their owners can let them suffer like that. We have to stop and say why are we keeping our beloved pets alive. Is if for them or for us? Dogs don't know what pain is or I should say they don't know that they shouldn't have it. they are stoic animals and go with the flow. We are their caretakers and we have to make the decision for them as they know no better. It is us who will hurt after the decision but our best friends will only feel peace. I have to believe that and believe Ollie has now been released from the terrible body that he was born with.

Kate H
9th December 2009, 08:36 PM
I think I'm right in saying that the Cavalier in PDE was not filmed specially for the programme - the video was made by its owners only a few hours before it was put to sleep - they wanted to publicise just how devastating SM can be, and the film was put on various websites. Unfortunately this was not made clear on the programme and there was a lot of criticism of the video.

Kate, Oliver and Aled

patg
9th December 2009, 09:19 PM
Hi, I just got done watching the whole documentary on youtube. I was not going to be home tomorrow night so I found it there. It is shown in 6 different segments but it shown in it's entirety. On youtube just search for Pedigree dogs exposed. I cried through most of it as I have Riley my Sm cavalier curled up here in my lap. I hope many people will watch it and get educated.
Kloey, I am so sorry for your loss. I can't imagine how painful it must be.

Cathy T
9th December 2009, 10:29 PM
We need to tell the stories of the Charlies and Ollies and make people understand that these are not isolated cases --but representative of what is happening to far too many in this wonderful breed.



Amen Phyllis!!! I know, for a fact, that there are far more Cavaliers out there with SM that aren't publicized. I would bet that anyone who knows 5 or more people with Cavaliers.....at least 1 of those people is or has been affected by SM. I have a huge circle of Cavalier friends and am regularly being told of yet another that has SM. Breaks my heart!!

I am so sorry for your loss Karen and so grateful that you are not content to sit by and do nothing. I support your efforts!

linderbelle
10th December 2009, 04:16 PM
There are no words except to say I'm so sorry and my heart grieves for you and I truly understand what you went through. My princess had surgery in March.

Charlotte
10th December 2009, 04:21 PM
Im so sorry, i found the book on www.cavaliercampaign.com (http://www.cavaliercampaign.com) and i will deffinatly be buying it, even though my dog dosnt have the illness i would still like to read about it

Karlin
10th December 2009, 04:49 PM
I think the biggest debt is to the researchers who kept working on this issue and trying to understand it better even as some clubs apparently decided not to fund them because they don't like the message :sl*p: (one club breeder has recently posted to this effect on a public discussion list. Imagine trying to block funding to the people who have done so much to help identify and relieve this pain and suffering, and worked so hard to keep giving breeders some options other than to let the breed collapse).

It is really, really important that puppy buyers and pet owners join together and say 'enough'.

The strongest way to do this is to absolutely refuse to buy puppies from anyone who is not cardiologist testing and has not MRId any of their breeding dogs. The next strongest is to write the clubs and the national clubs, the Kennel CLub and AKC and IKC and other national groups, expressing your concern at the lack of any formal guidelines on or requirements for health testing for this breed, and to make health -- as expressed in cardiologist results and MRI scans -- part of determining 'conformation' awards for show dogs.

You can also financially support research -- even the smallest donation helps -- for example by contributing towards Margaret's ongoing scheme, or buying Sandy's book.

Donations towards Syringomyelia DNA Research can be made via Paypal. Entering the following email address at the PayPal site will bring up the 'SM DNA Fund' account: penny.knowler@ntlworld.com. Donations can be made in several currencies using a credit card or PayPal funds.

If you have a cavalier that has been scanned, results can go to Sarah Blott. If it is over 5 and has a pedigree, a DNA donation is VERY VALUABLE for research -- email Penny at the above email address.

For a CHRISTMAS BOOK FOR KIDS that helps the DNA research:

http://www.sandjmilesbooks.com/iWeb/S%20and%20J%20Miles%20Books/Audrey%27s%20Tale.html

For a whole list of things YOU can do -- who to write, what to say, how to help fund research, see Carol's comprehensive information here:

http://www.cavaliercampaign.com/how-you-can-help.htm

I also strongly support any effort to get lower cost scanning schemes in place for breeders.

kloey
10th December 2009, 06:14 PM
Hi everyone,
I had seen the cavalier who was featured on PDE long before I saw the documentary. It was on a web site that has videos of dogs in different stages and degree of discomfort from SM.
Yes it was hard to watch but I did not let Ollie get that bad and personally I don't know how any pet owner could. But, I do think there should be a follow up documentary by those responsible cavalier breeders who are doing all they can to make sure they have their dogs screened for eye, MVD and offer certification to byers onthe sire, damm and grand sire and grand dam as well as the ages of the relatives and their current health statis.
As for SM. Unless we can get low cost screening available in each state even a few times a year for breeders it will become harder and harder to get them to comply. And, we definitely need to have breeders who do the screening and are willing to agree to the neurologists recomendations and not try and find another neurologist to review the findings and come up with a different prognosis to NOT breed. Right now, the way it looks, most of the bitches and sires will be disqualified and the breeders will be out of business.
We need to take baby steps, acknowledge the responsible breeders efforts, look for those breeders when purchasing or knowing of someone looking to purchase a cavalkier and direct them to that breeder. And breeders are going to have to acknowledge the defects prevelent in cavaliers on their site, direct prospective buyers to a site with information regarding the illness and give a THREE year health guarantee against MVD and SM. I realize that most owners will not return the dog to the breeder after a few years but if you can prove the dog has been altered or spayed and show positive medical findings that your dog, their pup, has MVD or SM within those three years ,then the breeder should allow you to keep it and offer another puppy of equal value if you want. That would be a step towards weeding out the non ethical breeders and hopefully direct us to to those that have a real sincere interest in preserving the health of the Cavalier Breed. Lets not throw out the baby with the bath water,. Lets keep a list of all the truly reputable breeders who are out there. This site is a great one to list some of them and make sure you do your homework before purchasing a cavalier. There are no guarantees in life, with our health, the health of our children or our pets.
We have an obligation to do our research, hope for the best and be ready to accept a problem if it arises. But, we do have a responsibility to the breed to make sure that when the low cost MRI's become available.\, if they do, that breeders utilize the service as many are now doing with cardiologists and optomologists. Lets give credit where credit is due to the good breeders trying their best.
I plan to get another cavalier but I also plan to do my homework and hopefully give my next best friend and myself the best chance possible for a healthy and happy life.

kloey
10th December 2009, 06:24 PM
Please let me know how Princess made out in her surgery. It's a long recovery and I can honestly say I know what you are going through. I'm not sure I agree with the long continuation of all the medication post surgery but we have to follow the surgeons advice. One thing I woud ask, two month post op, is if you could start to wean your dog off the meds one at a time and see how she responds. the less meds the better if Princess seems comfortable and you will know as she will demonstrate discomfort by her actions. Good luck. My heart goes out to you both

linderbelle
10th December 2009, 09:41 PM
When you refer to princess I assume you are referring to me saying my princess had surgery in March. Actually her name is Abbey but she's my princess. I have done a blog and still update periodically--like every couple months. The first month or so is very hard to read and if you read it I'm sure it will bring back alot of pain for you. Abbey is still on meds. Gabapentin, priloesec, temaril and for now I wouldn't even try to take her off meds. The first part of the year I'm taking her back for her yearly eval and of course will go over it all with the neurologist. She's doing ok--still has symptoms but we truly believed they would never go away as she was 5 when she had the surgery and had had symptoms for years. Long story. My blog is at:

http://abbeygeorgelinda.blogspot.com/

Again, I am so sorry. These guys just plain don't deserve what they are getting and we should not be going through what we are going through with these dogs as such a young age.

kloey
11th December 2009, 01:12 AM
I'm so sorry about calling her Princess instead of Abbey. I left a message on your blog which I just read. I was new to this site so I was not aware of it until you pointed it out to me. I wsh her health and you strength. It's what you both need. All anyone can do is just say I'm sorry as nobody can know what you are feeling as we all feel things differently. But, you have the right to grieve, cry, be angry for as long as you want or need. These are our children, no less and if someone doesn't understand this love than find people who do. This chat room is full of those of us who do understand.