4th June 2012, 06:51 PM
Thanks for your post Emma. It was great to read another story like mine. I'm so sorry what you've been through as well...
30th August 2012, 07:51 AM
Karlin asked about how my Dagny was doing in another thread, so I thought I'd update my post here.
News is mostly good. She's now 11 months old and is well-managed on gabapentin and diamox. She's not symptom free (worse in the morning upon waking) and still will have maybe 5 scratch sessions but not nearly as bad or as long as they were in the beginning. She'll do some face rubbing and maybe 2-3 times/month, one of those scratch sessions will result in a small yelp but not a SCREAM or anything close. But on most days, if you were here with us, you wouldn't see anything out of the ordinary. She loves going to the park, playing and being spoiled to death. She's stable now and has been for a few months, thank goodness.
BUT I can't help myself sometimes and I worry about if she's getting worse/when/how. If I should rush her back to the US, stay for 3 months to get the surgery and let her heal and then come back to France. I don't know what the right answer is and neither does anyone else. It's just too unknown. The plan was to move back to the US in the next year or so but who knows what will happen.
I think if we start to see a decline (hoping that day doesn't come for many, many years), I will probably take her to England via car (no air pressure to deal with like there is on a plane) and have Dr. Rusbridge do the surgery instead of the US (if we're still living here in France when that time comes). I struggle with knowing what path to take with her. Do we do surgery preemptively to attempt to "fix" the issue before it gets worse or do we just treat with meds as long as we can? She's still young. I don't know the best answer. I just don't know. I do know I love her to death and only want the best for her. I really wish surgery was a given like a knee surgery or something. I'd blow my savings and do it tomorrow if a doctor could tell me there would be a 90% good outcome. But we just don't know!
I thank you all again for your support through this. I truly mean that. It hasn't been easy at all.
I actually feel comfortable now posting my blog. Here's a recent post about Dagny doing what she loves best, running in the park. There are some pics of her and you can see her smiling:
18th January 2013, 02:33 PM
Hello from Turkey :)
I am very new to the forum from Turkey. I have 3 years old girl with no signs of Sm and I hope she won't have! However, i am trying to know more about this awfull illness. The more i am learning the more i get scared. even though my girl has not signs she is under risk like the other cavaliers, so, it is good to know about itin last month my 4 friends' babies had Sm surgery by the same neurologist, he is said to be best one in Turkey. SM is not well known in here, most of the cavalier owners dont know about it. So,I keep asking myself if my baby has it later on(hope not) is the surgery only option for us? Also, i question myself that is the neurologist doing the right thing without considering medication, just going trough the surgery? owners sees the signs, get the MRI s and the surgery. I looked lots of MRI scans to understand where i need to look at and what i should see if there is SM. İn fact, i asked my friend to show me her girl's MRI. I hope i express myself very clearly, if we need to deal with this in future i need to know what i am gonna face.
So, i read you journey and i felt very sad at the beginning! and then i relieved your baby is doiıng ok and you dont loose your hope! please keep going like this cos i am less scared by your unware help
18th January 2013, 02:58 PM
Hi Ebru: You are definitely a responsible cavalier owner and lover to make sure you know about this condition. Even though the number of cavaliers that are affected over their lifetime is high -- probably around 70% according to studies -- most of those will not have serious symptoms and some will not have any symptoms. But almost all cavaliers have a skull too small for the brain and that is obviously not normal -- so the goal must be to reduce the risk of this widespread breed problem, which breeders can do by working with researchers, using the MRI databases, and testing and following breeding protocols.
Unfortunately no one can know what to expect with their dog over its life which makes owning and loving this breed difficult, as there are always some worries in the background. The best anyone can do is be very careful in selecting a breeder and choose one who properly MRIs and follows the recommended breeding protocols. But often we already have our cavalier or have a rescue dog and do not know the parents' SM status as the breeder didn't MRI or the breeder isn't even known. In that case, the best we can do is be smart and be aware and informed about SM.
Surgery is not the only option and many cavaliers live many years and even a full lifespan on medications, but there are no clear answers as to which works best and neurologists each have their own opinion as to what option -- surgery or medications -- is best. Some do push strongly for surgery. Surgery generally halts progression. Medications won't stop progression. But dogs progress at different rates. I have a 9 year old who had symptoms from around 2, who has always been treated with medications. He has a quite good quality of life but even at his age I always wonder if I made the right decision. For now I feel that I did. But these questions sit in the minds of all owners of SM cavaliers I think.
The best resource for information on the condition is Dr Clare Rusbridge's web materials: http://www.veterinary-neurologist.co.uk/Syringomyelia/
She is easily the leading researcher into this condition and has been treating cavaliers with it for over a decade now. She leans towards using medications until they are no longer adequate to manage pain, before considering surgery, but I know there are some dogs where she would suggest surgery as the best approach depending on its symptoms, age and MRI result. I like her more conservative approach but other people might be more comfortable with a more aggressive approach towards going right away to surgery.
Unfortunately there are no definitive answers. But there is research, including by Dr Rusbridge, that suggests surgery gives a bit better longer term outcome for more dogs than medications, but the study sample was small and also relied on owner opinions which can be very subjective. That could work either way -- it could be that people using medications report that they see less pain than the dog would actually be experiencing -- meaning even more dogs really did better with surgery compared to medications -- or vice versa for people whose dogs had surgery, meaning owners thought their dogs with surgery were doing better than they really were. More dogs were put to sleep that had medications alone, though.
In memory: Lucy
21st January 2013, 11:22 AM
[so the goal must be to reduce the risk of this widespread breed problem, which breeders can do by working with researchers, using the MRI databases, and testing and following breeding protocols. ]
I definitely agree with that! Unfortunately, here in Turkey there is no breeding protocols to follow. I suppose you know what it means I am afraid number of SM surgeries will raise very soon here. I'd like to do something more but only i can do is telling cavalier owners about SM. this is good but i feel like i made many paranoid people.
[The best resource for information on the condition is Dr Clare Rusbridge's web materials: http://www.veterinary-neurologist.co.uk/Syringomyelia/]
Thank you for the link, it is really helpful. I've seen Dr. Clare's videos on youtube several times and it is good to know that i have a contact of her even though i dont know if i could reach her or not As i said SM is very very new known here and i would not want to rely on just one neurologist.
[Unfortunately there are no definitive answers. But there is research, including by Dr Rusbridge, that suggests surgery gives a bit better longer term outcome for more dogs than medications, but the study sample was small and also relied on owner opinions which can be very subjective. That could work either way -- it could be that people using medications report that they see less pain than the dog would actually be experiencing -- meaning even more dogs really did better with surgery compared to medications -- or vice versa for people whose dogs had surgery, meaning owners thought their dogs with surgery were doing better than they really were. More dogs were put to sleep that had medications alone, though.]
So, individually treatment is necessary as far as i understand but the treatment will be up to the owner. Being aware of making decision whether it is right or wrong is annoying as it could be uncorroborated treatment. God, i wish our little babies could talk to us telling how they feel and i wish if i had to make a desicion i'd do the best i could!