chiari malformation and episodic falling syndrome

[poppy26]

Hi - im new! thought id join as i would really like some experience on this!

Our lovely 5 month old cav has been diagnosed with these CM/EFS (via MRI early jan//spinal tap/bloods etc).

She has had circling episodes last week of december 23, and 3 weeks ago the episodic falling syndrome episode where she "collapsed" on my bed and her body was basically having a fit but concious.

last saturday (so end of jan), shes been yelping in pain on and off for an hour, air snapped three times which she has never done before. She unfortunately caught my finger the 2nd time and the 1st narrowly missed my young childs face (he was then removed and told to stay away from the dog) NOT her fault or his!! Third time she snapped then wanting cuddles from me.
After this, she was completely out of it, her eyes rolling so obviously and i couldnt bring her round.

i had already phoned the vet, passed to emergancy one etc. After these episodes she was "fine", jumped off the sofa, wagged her tail and carried on as normal. Vet advised monitor and come the sunday as she was back to "normal", Was about an hour in total this lasted - the last vet said just film them and call us, get stuff that we can see and know what it is up with her.


This dog has never shown a hint of aggression so i'm certain its pain only related on sat..
She will literally sleep probably 20-22 hours a day has from day one. Only wants small walks and then wants to go home, dosent enjoy exercise but LOVES dogs. Will chase a toy for 5-10 minutes then sleeps for hours, she does get very excited with this but again 5-10 mins then shes done.

Shes under the specialists anyhow, back tuesday. On sunday when i took her in, she got given painkillers from the vet - gabapentin, omeprazole and loxicom (had to stop the last due to diarrhoea)

Has anyone dealt with this before? What sort of life has their dog had?

Shes back at the specialists next week due to this saturday episode. Shes very funny about her neck being touched, very stiff in her neck but not had any more yelping episodes. Shes clearly still not right and as the vet said, medication is able to go up as shes on the "middle" dose for her weight

 

[Karlin]

Hi and welcome, I hope we can be of some support to you here as this must be such a shock and worry for you. In the SM and MVD cavaliers section, you can find many posts from over the years of people managing CM/SM and if you do a search for EFS, there are also many posts from people with dogs with EFS. It's hard to have both of these at the same time, or to predict how this might evolve for your girl. The goal is to have medication, or alternatively surgery, manage the pain and in the case of surgery, perhaps slow or halt progression. The neck stiffness sounds like perhaps some scoliosis? The fact that the yelping has ceased is a good sign as it means the meds are managing the pain. The neck sensitivity may not disappear though and possibly could increase or cause a curvature/head tilt, which is the dog trying to adjust its shape to reduce pain from that area. Sometimes scoliosis goes away as the pup matures, I don't think researchers know exactly why.

Your neurologist will be your front line for management decisions. It may be possible to manage her throughout her life on medications. If meds are not managing her CM/SM pain, then you may wish to consider surgery. Surgery can have a good outcome and I know of many people whose dogs went on to live a full lifespan and ultimately pass away from some other cause, generally MVD (heart disease) in cavaliers. These are all very personal decisions. It's valuable to have a specialist and a vet who can give you honest opinions.

I'd certainly inform the breeder that this puppy has these issues, if you haven;t. A responsible breeder will want to know this information for his or her breeding programme.

Cavalier Matters www.cavaliermatters.org has very good detail on CM/SM and EFS explained in an easy to understand way for cavalier owners. If you use the 'main content' dropdown menu you'll find lots of info, be sure to click 'next page' when reading under a topic because often there's more than one page of information. Dr Clare Rusbridge, the leading researcher/neurologist in CM/SM, also has lots of information on her website, https://www.veterinary-neurologist.co.uk/. It sounds as if your vet is familiar with this information and is using her treatment algorithm for medications for your girl. Also, www.cavalierhealth.org has a huge amount of detail on CM/SM and latest research, but it can be a bit more technical to understand.

 

[poppy26]

Hi and welcome, I hope we can be of some support to you here as this must be such a shock and worry for you. In the SM and MVD cavaliers section, you can find many posts from over the years of people managing CM/SM and if you do a search for EFS, there are also many posts from people with dogs with EFS. It's hard to have both of these at the same time, or to predict how this might evolve for your girl. The goal is to have medication, or alternatively surgery, manage the pain and in the case of surgery, perhaps slow or halt progression. The neck stiffness sounds like perhaps some scoliosis? The fact that the yelping has ceased is a good sign as it means the meds are managing the pain. The neck sensitivity may not disappear though and possibly could increase or cause a curvature/head tilt, which is the dog trying to adjust its shape to reduce pain from that area. Sometimes scoliosis goes away as the pup matures, I don't think researchers know exactly why.

Your neurologist will be your front line for management decisions. It may be possible to manage her throughout her life on medications. If meds are not managing her CM/SM pain, then you may wish to consider surgery. Surgery can have a good outcome and I know of many people whose dogs went on to live a full lifespan and ultimately pass away from some other cause, generally MVD (heart disease) in cavaliers. These are all very personal decisions. It's valuable to have a specialist and a vet who can give you honest opinions.

I'd certainly inform the breeder that this puppy has these issues, if you haven;t. A responsible breeder will want to know this information for his or her breeding programme.

Cavalier Matters www.cavaliermatters.org has very good detail on CM/SM and EFS explained in an easy to understand way for cavalier owners. If you use the 'main content' dropdown menu you'll find lots of info, be sure to click 'next page' when reading under a topic because often there's more than one page of information. Dr Clare Rusbridge, the leading researcher/neurologist in CM/SM, also has lots of information on her website, https://www.veterinary-neurologist.co.uk/. It sounds as if your vet is familiar with this information and is using her treatment algorithm for medications for your girl. Also, www.cavalierhealth.org has a huge amount of detail on CM/SM and latest research, but it can be a bit more technical to understand.

Thank you
unfortunately her breeder isnt registered or even the best place we got her from. Think many breeds and a naieve, grieving owner.

Shes very settled this week no yelping. She is definately stiff, and if shes walked 15 minutes shes exhausted. I know shes a puppy but shes constanntly tired (even before meds)


will have a search too about information and see what my vets say next week too

thanks

 

[poppy26]

gentle bump if anyone else has advice?

shes had a very good day today, lovely 40 minute amble but she held her head stiff and low the entire walk. Only wagged her tail when she was near her little human owner.

 

[Karlin]

Sounds like she still needs some meds adjustment and perhaps check if she is OK doing walks and for what timeframe. Dogs in pain will generally try to do what they're encouraged to do even if it is difficult for them, so this can be really hards to gauge without expert advice. That head position would probably;y indicate a considerable degree of continuing pain for her.

 

[Nicki]

gentle bump if anyone else has advice?

shes had a very good day today, lovely 40 minute amble but she held her head stiff and low the entire walk. Only wagged her tail when she was near her little human owner.

I'm so sorry to read about your puppy, devastating to receive these diagnoses at such a young age [and what was obviously a difficult time for you prior to purchasing her].

There is a website which is specifically about EFS that you may find helpful https://www.episodicfalling.com/about-ef. If they are having repeated episodes, then these can be managed with medication. Many dogs have had a normal life span and some have even had reduced numbers of episodes as they have matured.

Rarely, very severely affected dogs with poor quality of life and not responding to medication have a poor prognosis sadly. It sickens me that this condition is still occuring when it is so easy to avoid with a simple, cheap DNA test.


20-22 hours is rather more sleep/rest than would be expected for a puppy of this age - in my own expereince, dogs with pain may show this by resting considerably longer than expected. Sometimes they appear to be resting peacefully - we may expect them to be unsettled, frequent changes of position, moving around etc, as that would be a more usual presentation with CM/SM but that isn't always the case [many vets do not seem to be aware of this either].

40 mintues walk is a long time for any puppy of this age, I would advise discussing wtih your neurologist what would be best in terms of exercise. You may want to consider a dog stroller so you can be out for longer but your puppy can have rest periods. The surface they are walking upon has a considerable impact on their exercise tolerance too.

Low and stiff head position would concern me, that is often the first symptom noticed and would possibly indicate an increase/change in pain relief may be required.

If you have not done so already, download Prof Clare Rusbridge's treatment algorithm from the above links and take it with you to your neurology appointment - there are many options for medication etc.

In terms of management, there is lots of advice on www.cavaliermatters.org - particularly avoid jumping on and off furniture, out of the car etc. Raise food and water bowls and use a harness rather than a collar for lead attachment.

We had 7 Cavaliers with Syringomyelia as well as 2 with pain from Chiari malformation only, which was actually harder to manage. Many dogs are managed very successfully with medication/lifestyle changes - Cavalier Matter's Dougall is almost 17 and still doing well! He was diagnosed at 18 months. One of my own dogs did undergo surgery but sadly we lost him 11 months later. Our situation was complicated by chronic carbon monoxide poisoning though.

Wishing you well with your little puppy.

 

[poppy26]

Thank you - i should have come back here earlier!

since first posting, shes been worse with the scratching, the only thing that helps is distraction and a tired dog.

she goes for walks, today she did 2x 30 min walks (but when i say walk i mean amble!) she met some dogs which was a great distraction but soon as she gets home shes scratching like mad. shes stopped now as shes asleep for a bit

I've upped her meds, so shes on 250gm a day gabapentin, personally i think she needs something else too with the scratching. Ive spoken to the vet and they are going to call me and discuss.

I did consider getting her a friend, just for distraction, but the breed i want wouldnt suit her!

 

[Karlin]

I wouldn't get a friend for distraction -- distraction won't help just as having someone around when you're in pain all day isn't likely to be helpful --= more of an extra, tiring hassle -- , but hopefully getting the right mix of meds will. Be sure to have your vet review Clare Rusbridge's info as noted above, there are many, many additional meds to add to gabapentin and if she's not on gabapentin 3x a day then I'd move her to that (with approval of your vet). Only 2x isn't frequent enough for some dogs. I'm not sure what you are giving her and when? Clare Rursbridge's treatment algorithm goes into great detail on what to use for scratching and other symptoms and is the gold standard for treatment. Gabapetnin can be replaced with its newer relative, pregabalin, which is given 2x and at a lower dose, if gabapentin really isn't working, or if 2x is more convenient. Your goal should be to get scratching under control and ideally, eliminated our with only occasional breakthroughs. It's best to work with a neurologist if at all possible, as they know these meds well and can help fine-tune treatment. Most dogs will need changes made over time to the meds as one set often stop being as effective over time.

I'd only increase gabapentin within what is advised per weight of the do, and be aware that annual or biannual blood testing needs to be done (as Clare Rusbridge notes) to make sure there aren't problems such as liver damage).

 

[rlr]

Here is a link to a series of YouTube videos by Dr. Clare Rusbridge, who has devoted much of her career as a veterinary neurologist to finding out as much as she can about canine Chiari and syringomyelia (CM/SM) in dogs, particularly the cavalier King Charles spaniel. These videos include advice on how to recognize the signs of CM/SM, and its diagnosis, and its treatment. https://www.youtube.com/@clare-neurovet/videos

 

[poppy26]

I wouldn't get a friend for distraction -- distraction won't help just as having someone around when you're in pain all day isn't likely to be helpful --= more of an extra, tiring hassle -- , but hopefully getting the right mix of meds will. Be sure to have your vet review Clare Rusbridge's info as noted above, there are many, many additional meds to add to gabapentin and if she's not on gabapentin 3x a day then I'd move her to that (with approval of your vet). Only 2x isn't frequent enough for some dogs. I'm not sure what you are giving her and when? Clare Rursbridge's treatment algorithm goes into great detail on what to use for scratching and other symptoms and is the gold standard for treatment. Gabapetnin can be replaced with its newer relative, pregabalin, which is given 2x and at a lower dose, if gabapentin really isn't working, or if 2x is more convenient. Your goal should be to get scratching under control and ideally, eliminated our with only occasional breakthroughs. It's best to work with a neurologist if at all possible, as they know these meds well and can help fine-tune treatment. Most dogs will need changes made over time to the meds as one set often stop being as effective over time.

I'd only increase gabapentin within what is advised per weight of the do, and be aware that annual or biannual blood testing needs to be done (as Clare Rusbridge notes) to make sure there aren't problems such as liver damage).

Thank you - your right aboue a "friend", i am in agreement. Ive phoned the vets and waiting for a call back, shes on 3x a day gabapentin at the moment anyhow, my vet advised 100mg morning, 50/8 horus later and 50 again 8 hours - ive put her on 100 for bed and shes still quite bad.

Her head is tiny, i wish i could add a picture to show you, but imagine a teacup chihuahuha head on a cav body.

I have read a lot on claire rusbridge research .

She isnt fully grown yet, so im nervous how bad this will get before shes even one? she was diagnosed at 5 months old and she had screaming episodes