Prayers for Isabelle

[Pamela Warrington]

Hello,
I am new to this site, I found it because I was told just the other day that my precious 6 year old Blenheim has SM. Thought it was allergies but turned out to be this terrible disease that Cavaliers get. My doctor will start her on gabapentin, but I asked him about pregabalin. It's all new to me, has anyone gone through this? My prayer is that the Lord will heal her or at least the disease wont progress and become worse. My heart aches, because I love her so much and don't want to see her in any kind of pain. So far she just has small episodes where she hurts. Good days and bad days. Thanks to this site I need all the support to help carry me through this time in our life!

Blessings,
Pamela

[Sabby]

Hi Pamela
I can’t offer any advice but there are many people on this forum that have (unfortunately) lots of experience with SM. Just want to say that I am so sorry that your Cavalier has been diagnosed with SM. But at least you have a chance of treatment now and there are lots of Cavaliers on this forum that live wit SM and due to the medication they have got a good quality of life.
Sending

[Bet]

Hello,
I am new to this site, I found it because I was told just the other day that my precious 6 year old Blenheim has SM. Thought it was allergies but turned out to be this terrible disease that Cavaliers get. My doctor will start her on gabapentin, but I asked him about pregabalin. It's all new to me, has anyone gone through this? My prayer is that the Lord will heal her or at least the disease wont progress and become worse. My heart aches, because I love her so much and don't want to see her in any kind of pain. So far she just has small episodes where she hurts. Good days and bad days. Thanks to this site I need all the support to help carry me through this time in our life!

Blessings,
Pamela

Pamela,

You will get a lot of support and help from this Site,just ask any -thing you wan't to know about how to help Isabelle,

but you can be sure we are all thinking about both of you.

Bet

[Desrae]

Hello Pamela and welcome to Cavaliertalk! I am so sorry that Isabelle is afflicted with SM. It's good that you have found out about it and are getting help for her. This is a good site for cavalier owners/doggy lovers, you can get lots of support and advice here.
Sending positive healing vibes your way and saying a little prayer for Isabelle.

[Karen and Ruby]

Hi Pamela,

Im so sorry your little one has this- the horror you are feeling will soon disapear and you will be able to think clearly of your options.

Gabapentin is the norm as far as painkillers go, most dogs that are haing painful episodes will start off on this first. Pregabalin is far stronger and far more expensive so wont be the first port of call. Make sure you also get her on a diruetic as well. That is the medication that is meant to slow down the flow of CSF (spinal fluid) and 'hopefully' slow down or even halt progression.
At the age of six Isabelle is quite late on at diagnosis which is quite often a good thing.
The earlier the diagnosis the worse it tends to be. (although not definate or proven I beleive) Just through individual experience.

It isnt the end of the world though and you may take a few months finding the right mix of meds and pain releif to make her comfortable.

My Ruby was diagnosed in May last year with Moderate SM- her syrinx is wide and she was only 2.5 years at the time... BUT she lives a normal life on Pregablin and Cimetidine and competes in Agility and Obedience and most people wouldnt beleive there is a thing wrong with her!!

I hope you get all the answers you are looking for, chin up!

[Karlin]

Hi and welcome. So sorry you have had this diagnosis.

As others have said there are many here with SM dogs (I have two of my five, probably three but one has not been scanned). Dogs can be affected in many ways. Many will never show symptoms or obvious symptoms, some never progress (though this seems to be uncommon...), some progress very slowly, some progress quickly. Some will have their best chance with the decompression surgery; others might do fine on medications though medications do have a lower rate of success with more dogs needing to be PTS earlier. Much depends on the individual dog, and treatment is a highly personal choice for the owner with many different factors influencing their choice. There is no right answer -- though I think it is also important not to neglect all the current research evidence which does indicate most dogs will progress, most dogs on meds will need regular adjustment of medications to manage pain especially if they are being treated medically alone. Some -- like me -- prefer to wait on surgery in the hope that their dog will reach a 'normal' lifespan managed on meds, but there is good evidence that early surgical intervention does have a better result as opposed to waiting while greater neurological damage is done.

The earlier the diagnosis the worse it tends to be. (although not definate or proven I beleive)

To adjust this slightly -- it is actually the earlier the onset of symptoms which may or may not be tied to diagnosis -- some people with badly affected dogs only realise years later that their dog was symptomatic but incorrectly diagnosed. Dogs with symptoms/diagnosed before age 4 are considered 'early onset', and younger than 2.5 are considered to have probably more severe SM in most cases than dogs that don't show symptoms til much later. This is actually 'proven' to some extent (through several studies now inasmuch as it can be, and I am aware of a further study, quite large, which further confirms this) . However dogs do adjust to the level of pain with this horrible condition so owners and vets can easily miss symptoms and then think the dog has gotten 'better' on its own when it has just learned to tolerate the new threshold for pain. Also medications do not halt progression but simply relieve the pain/discomfort (there is some but not definite evidence that a CSF inhibitor can in some cases slow or halt progression but this is by no means definite and not for all dogs). That means medications can mislead owners into thinking their dog is 'getting better' when more likely, the condition is progressing but the symptoms are masked.

So there's a lot to weigh up and a lot to consider.

I agree that it is a good idea to have dog on a CSF inhibitor along with pain meds. Many people find they see a reduction in pain with the CSF inhibitor.

As noted pregabalin is expensive. However some neurologists feel it handles pain better for many SM dogs than gabapentin. It also remains longer in the system so doesn't need to be given as often. Unless a dog is in a lot of pain most neurologists would start with gabapentin.

What is very important is to keep an eye on how your dog is managing on her medications and be sure to return to the neurologist or work with your vet (who is presumably, speaking to your neurologist) on the medications mix. Most neurologists do feel medications work best in combination and need regular review.

On a personal note -- I have a 7 year old with a wide syrinx (these tend to be far worse for pain than longer narrower syrinxes, and lopsided syrinxes are also worse than evenly centered syrinxes). He has been on meds for 5 years now and has only had one serious pain session which in retrospect was probably precipitated by a fall and the kind of changeable weather that tends to make these dogs more uncomfortable (probably due to pressure changes). I have a 4-5 year old with a very small syrinx but very large ventricles who has some scratching and little else. The undiagnosed dog has persistent mild scratching at 7. The other 7 year old with a wide syrinx now has a moderate grade heart murmur (the other horrible and endemic condition in this unfortunate breed) -- so now I am always weighing whether he is of the age where surgery would ever be worth doing as his heart might end up the larger problem. Management is a persistent worry with these dogs and you are always having to weigh up doing A against doing B.

[Tania]

Hello Pamela and welcome to this forum. I am sorry you have had this diagnosis for little Isabelle. The advice you have been given is excellent and I cannot add to this.
Except, to reinforce the advice concerning the diuretic. When my dog Molly was first diagnosed, the original specialist did not prescribe the diuretic and predicted Molly would probably not survive for more than a few months. This was because she had a very large pre-syrinx on her spine (fluid ). Fortunately I went to see a neurologist who put her on diuretics immediately. Her next scan showed this had vanished completely. This was approximately 18 months ago.

It is devastating when you first find out. With the right medication and management Isabelle will probably stabilise.

I have put a website together to help people understand this disease in jargon free language. www.cavaliermatters.org

Please let us know how you and Isabelle are coping.

[Karlin]

will probably stabilise

Just want to emphasise 'stabilise' does not mean the condition stops progressing. According to the neurologists who treat it, it almost always progresses, and this is more the case with medications than with surgery. Medications can however get rid of some or all symptoms by allowing the dog to deal with the pain. Most often, progression continues and the meds eventually need to be adjusted or dosage increased. If a dog has slow progression it may live out its norma lifespan with its symptoms well managed -- but this is not stabilised in the sense of the problem is arrested. But the dog's pain can be addressed at least for a time and sometimes for a normal lifespan with medications. 'Progression' is a wide scale too -- I have seen tiny increments of change in one of my SM dogs so 'progression' doesn't by any means mean a fast or serious decline for some dogs.

Tania is right that there are a handful of cases seen where a dog improved with a CSF inhibitor -- but as far as I know the documented cases all involve syrinxes before they are actually large enough to be considered a syrinx. Such dogs haven't been subsequently MRId over time as far as I know to find out if a syrinx goes on to develop later on -- fingers crossed they do not.

I just worry sometimes -- as I know do neurologists -- that owners mistakenly think, once symptoms are managed by medications, that the medications route is managing the condition, as in preventing further progression. I sure wish this were true, but it isn't the case. Surgery can prevent further progression, but existing damage will generally continue to cause discomfort and require medications still.

This is also true of human sufferers of Chiari malformation and SM.

[daffymum]

Dear Pamela,
Sorry to hear about Isabelle,
My Daffy was diagnosed when he was 4, last year, prior to being diagnosed when he was 3, the local vet thought he had an allergy problem, and put him he was on piriton (anti histamine) on and off. His syrinx was found to be wide and centered, and recent MRI showed it has not progressed. He is doing pretty well on pregablin and cimetidine, and one other anti inflammatory drug.The neurologist switched him from gabapentin as Daffy's other problem was that he is overweight. Gabapentin make him lethargic and didn't helped with his weight loss program. Today especially, Daffy is like a normal dog playing catch ball with my other dog and its so nice to see him so active and playful.
I hope this information help and Good luck with the medication as you may need to adjust the medication a few times to make her comfortable.

[Love my Cavaliers]

I'm so glad you found this site Pamela. I too found CavalierTalk after Riley was diagnosed with SM. I found it while I was waiting for her neurologist to call me with the results of her decompression surgery. I elected to go the surgery route for her. She was almost 6 when she was diagnosed - after many years of misdiagnoses. She had her surgery 2+ years ago and is doing so well I sometimes can't believe it is the same dog. She will never be normal - the SM took it's toll on her vestibular system and damaged it too badly - but she is living a very normal life through the help of prednisone. She runs, she loves life, she loves walks, she is a happy dog. You can express you deepest fears here and you will get support. There are so many of us who have gone through what you are going through - if not the same thing, then we at least know the turmoil you are going through. Please let us know how you and Isabelle are getting along and whether the gabapentin helps her.