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Border Collie with Hydrosyringomyelia

sarahsum

Well-known member
Hi everyone, I'm new to this forum....but we are here because my 2 year old border collie has been diagnosed with severe Hydrosyringomyelia. We had an MRI two weeks ago & before that he was being treated for a slipped disc for a week, unfortunately the meds for that made his condition worse. We have been on steroids, gabapentin, frusemide & antibiotics for 10 days. I see you mention CSF inhibitors....what are they? he has typical cav symptoms, scratching, loss of front leg use, sensitivity to noise, scoliosis in his neck....my vet can't believe he is seeing all this in a collie! He has dilated ventricles, and a severe syrinx which tracks all down his cervical spine, it takes up the most of his cord in places, plus a hydrocephalus....:(

I can see this forum being INVALUABLE as a source of information & help, its great to be able to read other peoples stories of this horrible condition.
sarah
 
Hi Sarah
Welcome to the Forum, though I'm sorry for the reason you have joined. As vets and owners become more aware of SM symptoms, cases seem to be coming to light in more and more breeds, though so far most of the dogs with the disease have been in smaller toy breeds. Your collie sounds as if he is in a lot of pain, so I do hope his meds will help. It does sometimes take several months and some trial and error to get the balance of meds right. Frusemide is actually a CSF inhibitor - CSF stands for cerebro-spinal fluid, and an inhibitor or diuretic decreases the general level of fluids in the body and so relieves the pressure in the brain, as the fluid moves more slowly than it should and accumulates in the brain ventricles - which is why your dog has dilated ventricles, which in turn can force the skull outwards and cause hydrocephalus. You will find a lot of information on Clare Rusbridge's website (www.Veterinary.neurologist.co.uk), and she has a treatment algorithm (suggestions for treatment in different situations) that you can print off and take to your vet - he might find it interesting and useful if he doesn't already know it.

I was particularly interested (and concerned) to hear that a border collie could have SM. I do competition obedience with my two Cavaliers and so meet many, many border collies. Neck problems are very common - hardly surprising considering the ridiculous angle at which some of them hold their heads doing heelwork! - but I have heard of very few - if any - having MRI scans rather than X-rays to diagnose the problems. So pain in the neck and spine may be more than just misalignment or inflamed discs. Did your vet have any idea how your dog's SM was caused? With Cavaliers SM stems from a malformation at the base of the skull (CM) which blocks the flow of CSF and leads to all the subsequent problems (some of which can occur without the presence of a syrinx), and seems to have a genetic and hereditary basis.

I hope the meds make a real difference - and let us know how your collie gets on.

Kate, and Cavaliers Oliver (with SM) and Aled
 
Hi and welcome to the forum. It's a devastating diagnosis but at least now you know what has been causing all the different symptoms. You are right, this is a great resource for information and where owners can share their many varied experiences of the disease and what does and doesn't work for their dogs. I hope you will see an improvement in your collies' symptoms soon.
 
Hello and you're very welcome icon_welcome to Cavaliertalk. This is indeed an invaluable place for information, education... and support. I hope you can find some relief for your collie and that the symptoms improve.
 
Welcome to the forum. Sorry your dog has beeb diagnosed with this horrible disease. This is a good place to gather lots of information.
 
Welcome to the club that nobody wants to belong to.

Many of us know what it is like to live with SM dogs, watching how they can suffer and trying to find the best cocktail of medication to keep them comfortable. There is a lot of support here.

As you may have realised we are very keen to help SM research on this forum, and I wonder whether you would be willing to email UK researcher Penny Knowler and let her know about your young Collie?

Her email address is [email protected]

Many thanks,
 
Welcome to the forum and sorry to hear about your fur baby. You will find some great help here. Did you happen to post about your border collie on a sm facebook group? The reason I ask is because someone posted recently asking if bordie collies have been known to have SM.

Sent from my Droid using Tapatalk
 
Welcome and ask any questions you'd like. :flwr:

Penny Knowler would be very interested in hearing from you, if you will email her. :)
 
Welcome and ask any questions you'd like. :flwr:

Penny Knowler would be very interested in hearing from you, if you will email her. :)


I beleive you have Emailed Dr Rusbrudge already- she mentioned an Email from someone with a Collie with SM and Hydrocephelus when I was with her yesterday. There can't be many of those about!!

The drugs you have been given are pretty normal for SM treatment- as Kate said Frusomide is a CSF inhibiter, Gabapentin is the pain killer.

What drugs were you given that made it worse?
 
What drugs were you given that made it worse?[/QUOTE]

Hi everyone...thanks for your replies....i saw a deterioration of his condiotion when he was put on Tramadol & Diazepam when he was initially thought to have a slipped disc, plus the GA for the scan really knocked him off his feet for 2-3 days. Poor Blue.
Once we started omeprazole, steroids & gabapentin & frusemide there was such a dramatic improvement! he was able to attend training class & go for a walk & run again. Then we stopped the omeprazole & 2 days later there was a gradual decline back to wobbly Blue with dragging of his front legs. I went back to the vet today & he has put us back on the omepraziole so fingers crossed we see an improvement again. Initially we were on it as a drug to protect his tummy, but now i see it has beneficial "side" effects.
I will definitely email penny, and yes I did send Clare Rusbridge an email yesterday....i will leave no stone unturned in an effort to help my lad. I also had a really helpful email from a lady in Memphis!!
I think a friend of mine asked on a facebook page if anyone knew of a collie with SM....i didn't know there was a page...i will look!

Thankfully he doesn't seem to be in too much discomfort, he doesn't yelp out in pain like i have seen some dogs do, and he loves play time...lay on a bed settee just in case he tumbles....its amazing to see how he has adapted. the vets seem to think it has been a gradual onset since he was born, an embyological defect, although i don't suppose they know for sure. looking back over this year, i can now see things that have been happening over the last few months that are indicative of what has been going on. We went for the scan because he had a massive tumble in the garden & screeched in pain, at the time we thought the fall was the problem, but now we know that his legs probably gave and he went head over heels because of his SM. I had him down as being a bit clumsy, or too fast for his own good, but now i know differently.
He is such a trooper, and so plucky, he's a dog in a million!
 
So sorry to hear about your Blue. This is a perfect place for you to learn and bounce off treatments ideas with others who have dogs with this condition.

He sounds like a wonderful dog. I hope you can find the magic formula that will relieve his issues and keep him mobile and comfortable.
 
What drugs were you given that made it worse?[/QUOTE]

i saw a deterioration of his condiotion when he was put on Tramadol & Diazepam when he was initially thought to have a slipped disc

Diazepam (Valium) would definitely make his symptoms worse and cause him to be even more unsteady on his feet.

So glad that you are finding resources to help Blue, and that your experience in turn will help the research on SM.

Pat
 
I was so sad to read about poor Blue, but pleased that you have found us and really hope we can help and support you. I had not come across this as a problem in Border Collies, but just doing a search have found this:

http://www.ncbi.nlm.nih.gov/pubmed/15844429

A 6-month-old female Border Collie was examined because of a 1-month history of progressive curvature of the cervical portion of the vertebral column. Radiography revealed severe cervical and thoracic scoliosis. Cervical syringomyelia and hydrocephalus were observed by means of magnetic resonance imaging. Suboccipital craniotomy and laminectomy of the first cervical vertebra were performed, and substantial improvement in the scoliosis and syringomyelia was observed 3 months after surgery. No recurrences were seen during the first year after surgery.


It's good that you have been in touch with Clare - and will contact Penny.


There has been some recent discussion about the use of Frusemide as a CSF inhibitor, Clare prefers Cimetidine [Zitac] which is a very gentle drug - but if Blue has stomach issues it may be that he needs Omeprazole? It might be worth checking with your specialist.

If you have not found it yet, this is Clare's website. you can download a treatment algorithm to print off for your vet from this site, from Syrinogmyelia, downloadable PDFs. http://www.veterinary-neurologist.co.uk/

http://cavaliermatters.org/ has lots of useful tips and is written to be easy to understand
http://sm.cavaliertalk.com/ has lots of useful info and sheets you can print off for the vet

Are you seeing a neurologist?

It's just tragic to hear about this in such an active breed. I have a Cavalier who lived to run, who sadly has bad symptoms from "just" the malformation, and can no longer run - she gets very frustrated and depressed.
 
Yeah, I have my doubts about the frusemide being of any use. We initially had the omeprazole as a stomach protection for just five days and he improved so much on that and all the other drugs. Then over the course of this week, after the omeprazole had stopped, he has been getting worse and worse. I went back to the vets on Friday and asked to go back onto the omeprazole and he agreed (after I had seen it on this forum!). I was in despair this morning as he was so listless, wouldn't eat his food out of his bowl, I had to hold it on a saucer for him, and after he weed mid morning he just crumpled in front of me, his legs completely went as in a faint. He was fine in a few minutes, so I am wondering if his blood pressure dropped after he had been to the loo. This afternoon though he has been trying to trip me up with a football and is steadier on his feet, so I am hoping the omeprazole is working his magic. I have changed his diet to a more gentle, natural food. And I am careful what treats he has.
He is a bit of a novelty in border collie world, so it is so helpful to come on here and read other people's stories and know that we are not alone in what we are going through.
I notice there is a referral centre in Chester that specialises in these cases, we live an hour away. I'm wondering if it is worth getting a consultation there to see if we can tweak his meds. I'm not too keen on surgery after seeing him post GA after the scan.
Incidentally the factor causing us to go to the vet in the first place was also neck scoliosis and dragging of his left front foot. Looking back I can see that for about three weeks before that he had been displaying typical symptoms....scratching under his belly, little yips when he jumped up on occasion (I mentioned that when we had our boosters in august and the vet checked his neck and it was ok), and he had been out of sorts for a few weeks too. Interestingly at obedience when doing a recall he had started to come in cock eyed, I thought it was my handling or him being lazy, but now I know different. None of our vets have ever seen this before in a collie. I always knew he was special, he's my angel.
 
He sounds such a very special boy and is so lucky to have a really caring guardian.

I do think he needs to be under the care of a neurologist, really vets are like GPs, anything complicated like this really needs to be under the care of a specialist.

Few quick tips - raise his food and water bowls so he doesn't have to bend forwards [try to avoid him having to pick things up off the floor until he is more comfortable]. Also try a harness rather than a collar, sometimes it takes a bit of experimentation to find something they are comfortable with - often a collar will trigger scratching.

Maybe even try soft foods if he is feeling this bad at the moment? You could soak kibble or if he is on raw, use minces rather than bones etc, sorry just seen you've put him on something more natural anyway.


Are your vets familiar with Syringomyelia at all? Obviously you are extremely unlikely to find a vet [or possibly even a neurologist!] who has dealt with it in Collies before.

Sometimes it can be very sore for them to toilet, depending where he is feeling the pressure from the syrinxes - more usually when they defecate though.


Keep asking and posting, that's how we learn and slowly the pieces come together. It is helpful to write/type it down to take it to an appointment, as it's hard to remember everything.
 
I am starting a diary to record it all, as the breed health club is interested, and it helps put bad days into perspective.
We have got rugs and raised bowls and a fab harness with a handle on top which is great for steadying him with. I am back at the vets for bloods on Monday, I am lucky to have fantastic vets, my own vet treats cavs with the similar condition so is familiar with treatments. The vet from the practice that did the MRI in Yorkshire only suggested frusemide and I mentioned steroids and he was dismissive, but he was only young, maybe he hadn't come across the condition before. But a trip to a neurologist is a definite good idea, does anyone know of any particularly good ones in the North West?
 
The team at Chestergates are probably your nearest - they have a website if you google the name. Steroids seem to be used more as a last resort if pain becomes difficult to control, because of the side effects; most vets won't start dogs on them, unless they're needed for a short period to get acute pain under control.

One thing to look out for is that pain and discomfort can increase when there is a marked change in air pressure - on grey, rainy days, for example, when the pressure can drop quickly. Something to do with changing pressure within the ventricles, I think. Check with your vet whether it's OK to give an extra gabapentin when this happens - or perhaps to keep some metacam in the cupboard just to give an extra boost of pain relief.

Frusemide isn't ineffective, but it can have side effects in dogs that have the heart disease that is very common in Cavaliers, which is why some neurologists are moving away from using it. And it does make dogs wee a lot!

I think we all find that once a dog is diagnosed with SM we realise how many early signs we missed, simply because we didn't know what to look for - Cavalier owners tend to get a bit paranoid about watching their dogs, but having it in a collie must have been a complete bolt from the blue! It can take several weeks, even months, to get the cocktail of drugs exactly right for a particular dog, so keeping a diary is a good idea to record how Blue reacts to the various drugs and doses.

Kate, Oliver and Aled
 
His daily meds are 20mg frusemide twice a day, 10mg prednisolone once a day, 100mg gabapentin twice daily, 20mg omeprazole 20mg once daily. As his condition is so severe my vets opinion was to bombard him with all this then work at reducing dosage accordingly..obviously we can't do without the omeprazole as the past few days has taught us! He has severely enlarged ventricles and in places his spinal cord is almost obliterated, so I guess there is a sense of urgency in getting his csf pressure reduced. He doesn't know where his front legs are half the time, the vets are amazed he can walk at all. He's been playing tonight and following me around so I think he s showing signs of the pressure reducing.
 
Riley is the one of my four with severe SM. Like Blue, she had a very severe reaction to the GA for the MRI scan. She was unable to sit or stand for hours afterwards. They even kept her overnight for observation. Riley's main problem with SM was a very damaged vestibular system. Her syrinxes covered almost her entire spinal cord and she also had a large cerebellar cyst. We did elect to do decompression surgery on her even knowing how she barely handled the MRI. Her neurologist understood the concerns and watched her carefully during surgery, gave her different drugs and she came through with flying colors.

Before surgery her balance was so bad and combined with the weakness in her rear legs, she had to lean on the walls or cabinets to walk, otherwise she would fall over. She still cannot jump due to her leg weakness, but the surgery combined with daily prednisone has helped her balance tremendously. She still has pain - she hides under chairs and tables to get away from my other dogs at times, but she's a happy dog and she loves life. She catches chipmunks in the yard and loves to go on walks.

Kate's right - it does take a while to find the right drugs and dosage for your dog. After surgery even, it probably took close to six months before Riley did the best on Prednisone alone. She's been on it now for three years and it's been a miracle drug for her.

Good luck with Blue. He sounds like such a sweet boy. I'm glad he's back to playing and following you around.
 
Crikey, Blue sounds so much like Riley. He has a large fluid filled cavity in his ventricles, one at the base of his skull and most of his cervical spine has gone. He still jumps....scares me to death, but I think his back legs are so strong that it carries him through, but his front legs flop all over the place. And he leans against stuff to help him. I am going to see if he stabilises on this omeprazole and gets a bit of improvement, and I am going to see if we can get a referral to Chester Gate vets, all your stories are giving me a bit of hope. At the moment I cant see past the next 24 hours!
 
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