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cavie3
5th March 2013, 08:25 PM
He is only 9 months old, started to show signs as early as 5 months, this seemed to come and go, crying out without obvious reason, didn't like to be lifted or handled and he was displaying some very odd behaviours like head rubbing, ear scratching, sudden movements like chasing tail and biting his back legs. These episodes became more frequent and from doing research I realised he was showing many of the classic symptoms of SM so I had him MRI scanned. There were times when he seemed to be in so much pain that I couldn't touch him as he was reacting aggressively. After discussing with the vet Kookie was prescribed tramadol and vetergesic and an MRI was booked. It was an anxious wait of 3 weeks for the scan and results. The report from the radiologist states that Kookie has moderate CM with no visible syringomyelia at the moment however he stated that this could develop in later life, stating also that most cavaliers with CM do not show clinical signs. I was very relieved that there were no visible syrinxes. The vet has advised me to reduce the pain medication and he has prescribed prednisolone, thanks to this site and links to Claire Rusbridge site I have found that this will not be the best treatment plan. Can anyone here advise me if it is still possible to have a telephone consultation with Claire and if so how to contact her? I would also appreciate any advice from others who have knowledge of CM pain in their cavaliers. These last few weeks have felt like a roller coaster

RodRussell
6th March 2013, 12:24 AM
... The vet has advised me to reduce the pain medication and he has prescribed prednisolone, thanks to this site and links to Claire Rusbridge site I have found that this will not be the best treatment plan. ...

It is amazing how, in the year 2013, any UK vet could remain so ignorant about treating the pain of CM.

Karlin
6th March 2013, 12:56 AM
You would need to contact Stone Lion centre in Wimbledon. She has done distance consultations in the past. Contact info is right on her website.

If you are int he Uk it might make more sense though to go see her at some point. Or, depending on where you are,there are other neurologists to consult too. It is generally better for a neurologist to be actually able to see the patient, if at all possible. :thmbsup:

The treatment approach is generally the same as for SM -- Clare has a treatment algorithm you can download.

Unfortunately, steroids remain the medication of first choice for a lot of neurologists, too!! To me that simply makes no sense when there are other options with fewer potential side effects.

We also have several people here treating CM pain alone who can offer advice and support.

It might be useful to have Clare read your MRI for a second opinion as a lot of the scans where some radiologists/neurologists think there's mild or even no CM, turn out to be misread. A lot do not really have much ability to grade CM. Mild CM though can cause pain, still. The dynamics of pain in this condition are not well understood but there's evidence that CSF flow can vary in dogs (and humans) meaning there are other aspects than simply the degree of CM. Severe CM isn't always correlated to painful SM either, though of course the goal has to be to eventually breed away form ANY CM as it is not normal for an animal to have its brain compressed. :(

Kate H
6th March 2013, 11:33 AM
I'm sorry you have had this diagnosis and that your boy is showing such signs of pain. I would second Karlin - you need to see a neurologist (think consultant rather than GP vet) and get a second opinion on the scan. You don't say where you live in the UK, but if London is too far, there are excellent neurologists with great experience of CM/SM in other parts of the country - Glasgow University, Chestergates on the Wirral, Cambridge University Vet School, and others.

My Oliver does have a small syrinx but most of his problems seem to stem from his CM, which creates seriously dilated ventricles with resultant headaches and light phobia, though he has never had your boy's obvious pain (as Rod says, what is your vet thinking of, reducing his pain medication?!). CM is not to be taken lightly, and researchers are increasingly recognising that it can cause as many problems - and as much pain - as a syrinx. The radiologist may say 'most cavaliers with CM do not show clinical signs' - I would amend this to say 'do not show recognisable clinical signs' because some of the signs can be very easy to miss if you don't know what you are looking for. Oliver has squinted in strong light, been a restless sleeper, and head rubbed ever since I had him at a year old (he's now 11), but no one recognised these as signs of discomfort (head-rubbing is just one of those rather cute things Cavaliers do - but other breeds of dog DON'T do it, so in Cavaliers it's saying something). With most Cavaliers having CM, how many of them are living in discomfort, if not actual pain, because their owners don't recognise the signs?

:hug:

Kate, Oliver and Aled

cavie3
6th March 2013, 03:52 PM
Thanks so much everyone for your comments and very welcome advice. I have printed Claire Rusbridge's treatment algorithm and I see the current treatment plan for Kookie is certainly not the best way to go (introducing steroids, removing current pain meds gradually and introducing anti inflamatories). I live in the North so I guess Glasgow would be the nearest for me however I have emailed Claire at the Stone Lion Centre to find out if it is possible to give a 2nd opinion on the scan and a telephone consultation. I am trusting my gut instinct on this as I have felt for some time that something is just not right and at the very least I need to ensure he is comfortable and out of pain. I did start to reduce the pain medication and today he is having a very bad day so I will increase this again, I haven't started him on the steroids, whilst trying to get a neurologist opinion.

Karlin
6th March 2013, 04:30 PM
Glasgow has had some good people there, so that's a good place to start as it's close to you.

I def would not reduce the pain meds.

Once you have an opinion, it is very well worth politely returning to your vet and talking through the diagnosis and treatment needed. :) It will help them to consider that option f other cavaliers present with similar difficulties.

Karlin
6th March 2013, 04:32 PM
Forgot to add that one study concluded that about 25% of cavaliers in the group with CM alone showed pain from CM, so 1 in 4 is a considerably higher rate than the radiologist may be aware of.

Pat
6th March 2013, 05:57 PM
No one has mentioned this - but have you considered asking for a prescription for gabapentin as that is the main drug used for CM/SM pain? I presume that the vetergesic injection is something that he is not receiving on a regular basis but was just given initially, and he is only taking the tramadol at this point? I definitely wouldn't want to give vetergesic on any kind of regular basis as this is a pretty powerful opioid. This is not a drug that is commonly used for CM/SM pain.

http://www.noahcompendium.co.uk/Alstoe_Ltd/Vetergesic_0_3_mg_ml_Solution_for_Injection_for_Do gs_and_Cats/-60224.html

Tramadol alone isn't very effective either for CM/SM pain. It is generally used to augment gabapentin or pregabalin.

You said that the vet is introducing NSAIDS - has that started yet and which one is under consideration?

I'd really recommend that you consider adding gabapentin asap rather than waiting for a neurology consult given the amount of pain that you describe.

Pat

cavie3
6th March 2013, 06:51 PM
Glasgow has had some good people there, so that's a good place to start as it's close to you.

I def would not reduce the pain meds.

Once you have an opinion, it is very well worth politely returning to your vet and talking through the diagnosis and treatment needed. :) It will help them to consider that option f other cavaliers present with similar difficulties.

Thanks Karlin, I had a reply from Lions vets and they have advised that it is possible for Claire to look at the scans and offer a telephone consultation, she does however work by referral. I have rang the vet who has agreed to submit a referral for Kookie.

cavie3
6th March 2013, 06:57 PM
Those statistics are very high, once I have the neuroligist recommendations I will as you suggested in your previous post talk through diagnosis and treatment with the vet.

cavie3
6th March 2013, 07:27 PM
No one has mentioned this - but have you considered asking for a prescription for gabapentin as that is the main drug used for CM/SM pain? I presume that the vetergesic injection is something that he is not receiving on a regular basis but was just given initially, and he is only taking the tramadol at this point? I definitely wouldn't want to give vetergesic on any kind of regular basis as this is a pretty powerful opioid. This is not a drug that is commonly used for CM/SM pain.



http://www.noahcompendium.co.uk/Alstoe_Ltd/Vetergesic_0_3_mg_ml_Solution_for_Injection_for_Do gs_and_Cats/-60224.html

Tramadol alone isn't very effective either for CM/SM pain. It is generally used to augment gabapentin or pregabalin.

You said that the vet is introducing NSAIDS - has that started yet and which one is under consideration?

I'd really recommend that you consider adding gabapentin asap rather than waiting for a neurology consult given the amount of pain that you describe.

Pat

Hi Pat, thanks so much for your post and the link re vetergesic,
The tramadol and vetergesic (not by injection) was prescribed 4 weeks ago and has been ever since, following the scan report last Friday I was advised to start Kookie on prednisolone, (I haven't done this) reduce the vetergesic gradually(I have done this) and keep him on tramadol for now. The vets intention is to remove tramadol and prescribed NSAIDS after we see how Kookie goes with the steroids. Before Kookie had the scan the vet told me they can't prescribe gabapentin without a diagnosis! Seems to me they don't consider CM as warranting gabapentin so I feel the best option at the moment is to get a neurologist opinion and she has agreed to make a referral to Dr Rusbridge.

Emkaybee
6th March 2013, 07:33 PM
Just wanted to say I'm so sorry your Kookie is going through this, and I hope the doctors can help him.

Kate H
6th March 2013, 09:12 PM
'can't prescribe gabapentin without a diagnosis' Codswallop! If there is a delay in being able to get an MRI but the dog is in pain and CM/SM is likely, one of the things some vets do is to prescribe gabapentin and if it works, that in itself is a good indication of the presence of CM/SM or some other neurological problem, because gabapentin is not a general painkiller, it only works on neurological pain. Still, at least your vet is referring you, and Clare is incredible about making time for people, so hopefully you won't have to wait too long for proper advice.

Kate, Oliver and Aled

cavie3
6th March 2013, 10:23 PM
'can't prescribe gabapentin without a diagnosis' Codswallop! If there is a delay in being able to get an MRI but the dog is in pain and CM/SM is likely, one of the things some vets do is to prescribe gabapentin and if it works, that in itself is a good indication of the presence of CM/SM or some other neurological problem, because gabapentin is not a general painkiller, it only works on neurological pain. Still, at least your vet is referring you, and Clare is incredible about making time for people, so hopefully you won't have to wait too long for proper advice.

Kate, Oliver and Aled

That's very interesting to know that Kookie could have been prescribed gabapentin 4 weeks ago, even now he hasn't been offered this despite my asking for a referral to the neurologist. Take today for instance, he is normally such an energetic little pup but he has been listless, restless at times but subdued, not even up for going a walk. I am sure you have experience of this as your little on suffers pain from CM/SM and it is comforting to have support in what seems to be a an up hill struggle to get the help he needs.


Just wanted to say I'm so sorry your Kookie is going through this, and I hope the doctors can help him.

Thanks so much for your support.

ByFloSin
7th March 2013, 09:53 AM
I agree with what Kate has said about prescribing Gabapentin. Codswallop isn't quite the word I would use, but the stronger term I have in mind would get me thrown out of this list with a resounding thud :slp:

My local vet prescribes Frusemide, Metacam and Gabapentin for my boy who would otherwise have severe neuropathic pain from SM/CM without a problem, although I did give her a sight of his MRI pictures as soon as I received them from Chester Gates. Rebel is over 10 years old and quite comfortable and sprightly since establishing his treatment regime, which is proof enough for me that Gabapentin works well.

If you aren't getting the good working relationship with your vet after receiving advice from Stone Lion, then change the vet. End of.

cavie3
7th March 2013, 12:40 PM
I agree with what Kate has said about prescribing Gabapentin. Codswallop isn't quite the word I would use, but the stronger term I have in mind would get me thrown out of this list with a resounding thud :slp:

My local vet prescribes Frusemide, Metacam and Gabapentin for my boy who would otherwise have severe neuropathic pain from SM/CM without a problem, although I did give her a sight of his MRI pictures as soon as I received them from Chester Gates. Rebel is over 10 years old and quite comfortable and sprightly since establishing his treatment regime, which is proof enough for me that Gabapentin works well.

If you aren't getting the good working relationship with your vet after receiving advice from Stone Lion, then change the vet. End of.

Thanks FloSin,

It's great to know that others understand the problem of getting the right help for Kookie and I am grateful for all the advice from others who have gone down this road. Kookie suffered quite a bit of discomfort yesterday and during the night, with many scratching episodes, we had difficulty with grooming especially round the ears and eyes so he is clearly uncomfortable. Following the advice on here I rang the vet this morning informing her that Kookie has had another painful episode and asked if she can prescribe gabapentin whilst we await the neurologist's input. The vet said she will send the referral of today to Stone Lion, they won't have gabapentin at our local surgery as the drug is expensive but she will try to organise this for pick up later today. I don't want to make any rash decisions regarding the vet but if I encounter any problems following Dr Rusbridge's input then I would certainly consider this.

murphy's mum
7th March 2013, 02:34 PM
So sorry to hear your going through this with such a young pup, just when he should be running riot too.

If you do need to end up seeing a Neuro in person, I can assure you that Glasgow as fantastic, I can pick up the phone at anytime, or drop an email and get a very quick response. Both of mine get treated there, and one has also visited the pain clinic there to get further help in settling him down. Finding the right meds can be tricky, but once the right ones are found it can make a huge difference to how they behave.

And I wouldn't think twice about changing vets if you have any concerns, I had to switch vets as they didn't believe my first one to be diagnosed had SM, or that she needed a referral! Needless to say we no longer visit that practice :)

cavie3
7th March 2013, 03:00 PM
So sorry to hear your going through this with such a young pup, just when he should be running riot too.

If you do need to end up seeing a Neuro in person, I can assure you that Glasgow as fantastic, I can pick up the phone at anytime, or drop an email and get a very quick response. Both of mine get treated there, and one has also visited the pain clinic there to get further help in settling him down. Finding the right meds can be tricky, but once the right ones are found it can make a huge difference to how they behave.

And I wouldn't think twice about changing vets if you have any concerns, I had to switch vets as they didn't believe my first one to be diagnosed had SM, or that she needed a referral! Needless to say we no longer visit that practice :)

Thanks so much for your post and the recommendation re neuro in Glasgow and glad to hear that they have been fantastic with your two. That is certainly encouraging for the future should Kookie need to be seen in person. I feel the biggest hurdle has been having it recognised that CM alone can cause considerable pain in some cavaliers. I am thankful therefore that Kookie has been referred now by the vet to the neurologist who can make the final scan interpretation and recommendations.

Margaret C
7th March 2013, 06:24 PM
I rang the vet this morning informing her that Kookie has had another painful episode and asked if she can prescribe gabapentin whilst we await the neurologist's input. The vet said she will send the referral of today to Stone Lion, they won't have gabapentin at our local surgery as the drug is expensive but she will try to organise this for pick up later today.

Try and film what your little dog does, it may help with the assessment A picture is much better than words.

Gabapentin is not that expensive & you do not need to buy it at the vet. It is a human drug so she can give you a private prescription & you can get it from any pharmacy. A lot of us use Boots or Tesco.

ByFloSin
8th March 2013, 10:30 AM
What you say about Gabapentin is so right Margaret. Because I have two long term ill Cavaliers and Rebel's age, the partners at my vet's decided to charge Rebel's meds at cost with nothing added on for profit. This means that I pay very little, something like about 20 a month for everything he takes. They do of course charge 25 or so for his 3 month consultations though, but that includes his 6 monthly blood tests. They also send me monthly invoices, which means that I can pay by CT at a time to suit me.

cavie3
8th March 2013, 11:37 AM
Try and film what your little dog does, it may help with the assessment A picture is much better than words.

Gabapentin is not that expensive & you do not need to buy it at the vet. It is a human drug so she can give you a private prescription & you can get it from any pharmacy. A lot of us use Boots or Tesco.

Thanks Margaret, I have got some videos of Kookie showing symptoms and I did email those to the vet prior MRI scan. Kookie started on the gabapentin yesterday and although it is early days there seems to be a big improvement. His eyes look much brighter today, he is full of mischief and he seems to have boundless energy. I was surprised the one month supply of gabapentin cost me 14.04 from the vet so not so expensive considering the cost of the vetergesic he has been on for the last month.


What you say about Gabapentin is so right Margaret. Because I have two long term ill Cavaliers and Rebel's age, the partners at my vet's decided to charge Rebel's meds at cost with nothing added on for profit. This means that I pay very little, something like about 20 a month for everything he takes. They do of course charge 25 or so for his 3 month consultations though, but that includes his 6 monthly blood tests. They also send me monthly invoices, which means that I can pay by CT at a time to suit me.

Thanks Flo, your vet seems the best you can hope for and it must instill faith in you when you know they will do all they can for your boy. Kookie seems to have made a great improvement in a very short time since starting on the gabapentin and thanks to everyone here for their sound advice.

Karlin
8th March 2013, 12:42 PM
It will likely cost even less if you go directly to the chemist. There's no reason to get meds through the vet as this is a human medication anyway -- worth ringing around to see what you'd be charged directly.

Gabapentin can be transformative for SM and CM dogs. :) Do follow Clare's algorithm though with your vet-- dogs on these meds need an annual blood panel done just to make sure they are not having side effects.

Glad Kookie is appearing far more comfortable as you investigate this condition and treatments further. :)

cavie3
8th March 2013, 01:31 PM
It will likely cost even less if you go directly to the chemist. There's no reason to get meds through the vet as this is a human medication anyway -- worth ringing around to see what you'd be charged directly.

Gabapentin can be transformative for SM and CM dogs. :) Do follow Clare's algorithm though with your vet-- dogs on these meds need an annual blood panel done just to make sure they are not having side effects.

Glad Kookie is appearing far more comfortable as you investigate this condition and treatments further. :)

Thanks Karlin, fortunatley I have pet insurance for Kookie so I am not sure how it would work if I didn't get the meds from the vet, should the premiums rocket as a result of his condition then this information will be very useful for the future. I also joined the vet careplan which gives 10% discount on all medications so every little bit helps. He sure seems a different little boy today comparing with the last few days.

Karlin
8th March 2013, 08:10 PM
Usually you just get a form from the company and send in receipts and whatever else they need.

Most insurance premiums will start to rise once a dog has had some treatment. unfortunately! Sometimes it is not very much though and still far outweighs paying for everything.

One of mine is on gabapentin and cimetidine, the other two with SM are on cimetidine alone.

ByFloSin
8th March 2013, 08:41 PM
Thanks Flo, your vet seems the best you can hope for and it must instill faith in you when you know they will do all they can for your boy. Kookie seems to have made a great improvement in a very short time since starting on the gabapentin and thanks to everyone here for their sound advice.

So glad that the Gabapentin has made such a great improvement in such a very short time. It just goes to show that finding the right medication for a particular dog makes all the difference.

cavie3
9th March 2013, 05:23 PM
Usually you just get a form from the company and send in receipts and whatever else they need.

Most insurance premiums will start to rise once a dog has had some treatment. unfortunately! Sometimes it is not very much though and still far outweighs paying for everything.

One of mine is on gabapentin and cimetidine, the other two with SM are on cimetidine alone.

Thanks Karlin, my goodness you have 3 babies with this condition, my heart goes out to them but it is heartening to know that with the right medication they can be comfortable.


So glad that the Gabapentin has made such a great improvement in such a very short time. It just goes to show that finding the right medication for a particular dog makes all the difference.

Thanks Flo, it is sure great to see him tearing around again and atleast I know I am on the right track.

cavie3
12th March 2013, 07:31 PM
Just an update, I have spoken with the neurology nurse today at Stone Lion, they have received the vets referral and hopefully Kookie's MRI scan will be viewed this weekend by Dr Rusbridge. They have been so wonderfully supportive with any correspondence I have had with them.

cavie3
21st March 2013, 11:35 AM
Just an update, I have spoken with the neurology nurse today at Stone Lion, they have received the vets referral and hopefully Kookie's MRI scan will be viewed this weekend by Dr Rusbridge. They have been so wonderfully supportive with any correspondence I have had with them.
New thread started "Kookie's report from Dr Clare Rusbridge