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View Full Version : Life with SM......Hearbreaking letter in this week's Dog World.



Margaret C
15th March 2012, 05:45 PM
Just after the showing of the second Pedigree Dogs Exposed film a breeder wrote a widely circulated letter questioning the SM research.
She refuted the conclusions of a study based on 500 plus MRI scanned cavaliers without symptoms because her five scanned dogs gave a different result.

This week the Dog World Newspaper has published a reply written by the mother of a young woman diagnosed with SM.

I would like to think that this will also be widely circulated on cavalier breeders forums.

Don’t wait for science
I felt I had to reply to Bridgette Evans’ letter ‘Is the science right?’(DW March 9 2012)
Although Bridgette is to be applauded for raising the subject of Syringomyelia in Cavaliers at her breed club AGM, I am dismayed by the woeful lack of progress in the ensuing ten years.
I have to say at the outset that I have zero experience in this breed. Therefore you may ask, am I qualified to give an opinion? Well, sadly, my knowledge of this devastating condition has been learned the hardest way of all.
My 31-year old daughter, Gem, has suffered the horrendous effects of SM since childhood, thought due to the ongoing universal ‘ignorance’ of this condition she was not diagnosed until in sheer desperation we went to the Mayo Clinic in Florida in 2001, where an MRI revealed the terrible truth.
Gem’s whole life has been difficult, to say the least. She was in a wheelchair by 18 and is now virtually bedbound. Despite the best medical care in the UK, hope has all but disappeared.
Gem’s syrinx measures only 3mm at its widest point, yet has devastated her life and, to a lesser extent, that of her family. It is important to note that as Bridgette has said, much larger syrinxes can be present with fewer symptoms and can even be asymptomatic. Why? Who knows?
I have spent the last 11 years researching SM, in an effort to find anything that may make my daughter’s life easier to bear, with little success. She is currently on enough pain medication to down a bull elephant, yet still the agonies continue, unabated and largely undiminished.
Gem’s life continues to be blighted with severe pain, particularly in her lower body. In addition to this pain, 24/7 headaches, wild temperature fluctuations, skin hypersensitivity and photo sensitivity, not surprisingly mean that despair and depression are never far away. Her future seems bleak indeed.
So yes, sadly I think I am more than qualified.
Bridgette disputes the statistics cited on the sequel to Pedigree Dogs Exposed, on the grounds that too small a sample was used, citing her own rather different experiences with five of her own dogs. So, for arguments sake, let’s just say that her findings are more accurate, which they very well might be. In her own words, one dog out of the four to be rescanned was found to have progressive and degenerative SM, representing 25% of the sample. What she is telling us therefore, is that out of the estimated 100,000 Cavalier population, according to her own experience, 25,000 Cavaliers may eventually suffer the agonies of acute, neurological pain for the rest of their tortured days!
I am beyond horrified.
If one Cavalier has to endure this nightmare situation – it is one too many.
Bridgette says, ‘Many ask why we are expected to adopt a scheme in black and white for a condition which has obvious shades of grey?’
If the Cavalier people are waiting for black and white they will be waiting a very long time and it their dogs who will be paying the painful price for their inaction.
Answers? Everyone wants answers. Neurologists have been looking for more than 100 years for answers to this complex, contradictory and downright perplexing condition, but in the main they have been depressingly unsuccessful.
So I make a heartfelt plea to all Cavalier societies, breeders and owners. Do not sit back and wait for science to furnish you with the answers you seek- because it isn’t going to happen! You and you alone have to take action now to stop the suffering and the potential suffering of your beloved breed. Complacency and denial will cost your Cavaliers dear.
When I told my Gem that Cavaliers have SM too, she said they were lucky. Puzzled by her response, I asked her why. She replied, ‘Because they can be put to sleep and be at peace.’
Cathy Harding


The actual letter can be seen here:

http://www.cavaliertalk.com/DWSMletter.pdf ( To read it properly change the magnification on the top from 51% to 100% )

The original letter can be read on Post 9 here:

http://www.cavaliertalk.com/forums/showthread.php?40934-More-points-raised-by-PDE2

tuppenlil
15th March 2012, 06:21 PM
This presentation gives a small insight into the variety of symptoms that HUMAN sufferers may experience with just Chiari Malformation:

http://www.conquerchiari.org/SYMPTOMS Presentation 2011.pdf

There are several other links for further information within the presentation itself.

Maggie

meljoy
15th March 2012, 06:48 PM
Thats absolutly heart breaking, it is also thought provoking. I wish nothing but the best to the author of that letter and her daughter Gem.

Tania
15th March 2012, 07:07 PM
Life with CM can be equally devastating. I have a friend whose daughter is a sufferer, she is amazed we breed dogs knowing the life of pain they will endure!

anniemac
15th March 2012, 07:36 PM
Life with CM can be equally devastating. I have a friend whose daughter is a sufferer, she is amazed we breed dogs knowing the life of pain they will endure!

Just like some dogs. It seems that the author says that she has asked asked questions why some with larger syrinx are asymptomatic. Trying to find answers for over 10 years to that. I just am upset with ending. I still feel some can be managed with medications. Some can't. Very sad but the ending life is something I can't swallow.

MomObvious
15th March 2012, 08:16 PM
Thank you for sharing that with us its something we need to know. This is EXACTLY why I am not willing to lower my standards and buy a puppy from a breeder who is not scanning their dogs regularly, getting cardo heart checks, etc. I will not and can not support a breeder who its unwilling simply unaware or just don't think this is a big deal. They are putting their own breed in harms way. It hurts me to say this because I want a cavalier puppy SO badly but I would rather have none at all then hand my cash over to someone who will continue to bring dogs into this world for profit over their well-being. I'm still going to continue to search for that breeder and try to work with rescue but....
Sorry to rant not really. I am new to the world of cavaliers and I already feel strongly about them I know those of you who have been fighting this for your animals will understand.

That's all I have to say about that.....(Forrest Gump)
Melissa

Brian M
15th March 2012, 08:23 PM
Hi

Last Thursday I took Rosie to the Vets and as we were leaving after discussing her C.M. my Vet commented that the next day one
of his colleagues children was undergoing surgery fo S.M. at the age of 15 ,so maybe with greater awareness S.M in humans is
more common than we originally thought .My wife Dawn has had severe tension like headaches for as long as she can remember she
says the pain attacks start at the top of her neck and then spreads ,also her daughter from her first marriage similary suffers and unfortunately
Luke has occasional similar attacks but not as common as his Mum .Dawn has saw many Doctors through the N.H.S. and then we tried numerous
consultants privately but no one has found a reason or a cure they just gave just all seem to say that its tension pain but none
suggested an MRI but then at that time we didn't have any Cavaliers so neither of us were aware of SM nor it seems were the Doctors. This horrible
problem has prevented her from working as the pain is so frequent and severe she cannot concentrate for any length of time so she
stays home and looks after the girls while as I do not suffer from any of these problems go out to work to earn the money to buy all our Cavalier stuff.

So since the arrival of our girls and our increasing knowledge of SM we have often wondered if this could be a possible reason but Dawn has resigned
herself to her pain and is not prepared to undergoe any further investigations especially as even if we find it could be the reason there is no cure so
why she says should she bother to start with more Doctors when theres no light at the end of the tunnel.

Kate H
15th March 2012, 09:44 PM
You can find out more about CM/SM in humans at www.britishsyringomyelia-chiarisociety.org (http://www.britishsyringomyelia-chiarisociety.org) It administers the Ann Conroy Trust, which has contributed financially to the Cavalier genome research in Montreal, and in its newsletter has regular updates on Clare Rusbridge's research. Surgery seems to be much more common - and successful - for humans, but obviously isn't always possible. I think we can learn a lot about possible symptoms in our Cavaliers from human stories of the disease - like photo phobia (mentioned in the letter about Gem) and tinnitus, for example.

Whether in humans or dogs, it's a terrible disease.

Kate, Oliver and Aled