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Cemilie
16th September 2010, 12:43 AM
My cavalier Frida has SM, diagnosed with MRI 16 july. She is on 100 mg neurontin 2 times a day and 5 mg prednisolon once a day. She started the neurontin almost 4 weeks ago, then she had been on prednisolon since 16 july, but I was not pleased with her condition.
I have read about the lack of 100 mg neurontin in UK, and also regristed that there is no lack of 300 and 600 mg tabletts. Is there any dogs who get this size of tabletts? I mean - will larging the doze might be a thing for us to do with Frida?

I also wonder - I have been told that it can take up till 4 months before the neurontin is working full. Is there anyone her who have any experience they would like to share with me here?

Is there any other drugs used with luck on cavaliers with SM?

I must admit it tears me apart to see her suffer. She is not screaming or anything as long as she is on the meds, but she has some scratching. She is also spending quite a lot of time lying with her head up, not resting. ( Even if the 3 other dogs sleeps around her). I no longer scratch or pat her on her back because she seems uncomfortable with it.

I would love to get some tips here. My vet has never treated a dog with SM before and we are together trying to find the answers. It seems that in Norway the only meds that has been used to treat SM is Neurontin and Kortison (prednisolon). I read here about Lyrica and E-mailed a link to my vet. We are going there tomorrow morning.

I will be happy for all the answers I get

Kate H
16th September 2010, 11:22 AM
Sorry to hear about Frida. Your vet would find Clare Rusbridge's website useful if he hasn't treated an SM dog before - in particular there is a page with treatment advice for vets. Gabapentin/prednisone makes some dogs temporarily sleepy, and most of us have found that they need a bit of juggling of drugs and dosage before they are as comfortable as possible. My Oliver also props his head up as much as possible, or lies on his side, but his syrinx is small and I think it is his dilated ventricles which make him uncomfortable and this is helped by not resting with his chin flat on the floor.

Oliver was diagnosed with SM at 6 and is now 9 and doing well - so hopefully, once you can get the medication right, you will be able to enjoy life with Frida for many more years.

Kate, Oliver and Aled

Margaret C
16th September 2010, 01:51 PM
Some dogs on Nuerontin (gabapentin ) progress on to larger doses but 100mg seems to be the usual start-up dose.

Many owners of SM dogs have noticed that they are more comfortable if they have gabapentin at 8 hourly intervals.
I would really advise that you ask your vet to let you give her three tablets a day, as you may find it makes a considerable difference.

I found the improvement from gabapentin happened immediately. I have never heard before that it takes months to fully take effect.

With my dogs we added an anti-inflammatory painkiller meloxicam when the gabapentin alone was not enough to control the symptoms.

As Kate says, you need to juggle with the medication to see what works best

Cathy Moon
16th September 2010, 01:57 PM
You might want to discuss changing Frida's Neurontin dosage to 100mg 3 times per day, rather than 2 times per day. Neurontin seems to work for about 8 hours, whereas Lyrica can work for 12 hours.

The neurologists I've consulted with for both Geordie and Charlie also recommend Prilosec/Omeprazole for lowering the cerebrospinal fluid pressure. Unless a cavalier has had decompression surgery, this drug would most likely be given daily, because it could possibly slow the progression of the disease.

Cemilie
16th September 2010, 05:57 PM
Thank you so much everyone for your answers. I am very happy for all advice I can get. I will talk to my vet about giving her neurontin every 8 hours. And I will find the page at Rusbridge site with the advice for medication. Thanks everyone for all help.

I hope I can stabilies Frida so she can have a good life. Is it many of you who has a dog with syringomyelia thath you with medication get them without symptoms? Or do I have to settle down with some symptoms?

jacies
16th September 2010, 06:12 PM
Thank you so much everyone for your answers. I am very happy for all advice I can get. I will talk to my vet about giving her neurontin every 3 hours. And I will find the page at Rusbridge site with the advice for medication. Thanks everyone for all help.

I hope I can stabilies Frida so she can have a good life. Is it many of you who has a dog with syringomyelia thath you with medication get them without symptoms? Or do I have to settle down with some symptoms?

You might just have made a typing mistake, but it is not neurotin every 3 hours but 3 times a day or every 8 hours.

I give my dog Chaos one capsule at 6 am, one at 2pm and one at 10pm. She has been on this dosage for two years now. As time has gone on we have also added Omeprazole to reduce the fluid, plus 2.5 mg prednisolone every other day and Tramadol 25mg twice a day. I think we all with SM dogs try to keep them comfortable with as little symptoms as possible but Chaos does still have some scratching, particularly when excited, but is doing much better at the moment. Once you have found the right mix for Frida I hope you find her symptoms are much reduced.

Cemilie
16th September 2010, 08:24 PM
You might just have made a typing mistake, but it is not neurotin every 3 hours but 3 times a day or every 8 hours.

I give my dog Chaos one capsule at 6 am, one at 2pm and one at 10pm. She has been on this dosage for two years now. As time has gone on we have also added Omeprazole to reduce the fluid, plus 2.5 mg prednisolone every other day and Tramadol 25mg twice a day. I think we all with SM dogs try to keep them comfortable with as little symptoms as possible but Chaos does still have some scratching, particularly when excited, but is doing much better at the moment. Once you have found the right mix for Frida I hope you find her symptoms are much reduced.

Thank you - yes I did a typing mistake there :-)
Frida has some scratching when she gets exited, specially when I am getting ready to leave the house. She is a dog who is used to be with me alot. We have been practising agility quite reguarly, but it has been more and more clear that her entusiasm for jumping has gone down a lot - and i believe it is because she has pain when she jumps. It tears my heart out to see her exited, entusiastic and extremely happy when we enter the place we practice agility. She also is barking, and wagging tail and takes of like flying towards the first jump and then quikly her exitement dissepears, the tempo slows down but she still goes on working. It took an MRI because I understood why, and we no longer practice agility.

But - what I wanted to say really is that when I practice with her, obedience, freestyle or something she is always very exited. But then she does not have symptoms (at least not until now) My theory is that she think this is so much fun that the fun with this takes away the pain she feels. Because I can not understand anything else than that she must feel the pressure inside also when she gets very exited because er are doing something fun together.
(I just wanted to say that we dont practice with a goal to compete or anything, we are just having fun together)

Kate H: Thanks a lot for the tip about the treatment tips at Clare Rusbridge website. I have been reading a lot at her pages, but I admit thisone I had not seen. It is very usefull - thank you!

Karen and Ruby
19th September 2010, 08:58 PM
Thank you - yes I did a typing mistake there :-)
Frida has some scratching when she gets exited, specially when I am getting ready to leave the house. She is a dog who is used to be with me alot. We have been practising agility quite reguarly, but it has been more and more clear that her entusiasm for jumping has gone down a lot - and i believe it is because she has pain when she jumps. It tears my heart out to see her exited, entusiastic and extremely happy when we enter the place we practice agility. She also is barking, and wagging tail and takes of like flying towards the first jump and then quikly her exitement dissepears, the tempo slows down but she still goes on working. It took an MRI because I understood why, and we no longer practice agility.

But - what I wanted to say really is that when I practice with her, obedience, freestyle or something she is always very exited. But then she does not have symptoms (at least not until now) My theory is that she think this is so much fun that the fun with this takes away the pain she feels. Because I can not understand anything else than that she must feel the pressure inside also when she gets very exited because er are doing something fun together.
(I just wanted to say that we dont practice with a goal to compete or anything, we are just having fun together)

Kate H: Thanks a lot for the tip about the treatment tips at Clare Rusbridge website. I have been reading a lot at her pages, but I admit thisone I had not seen. It is very usefull - thank you!


Hi there- sorry you have had this diagnosis :(

It is heart breaking and there are many of us who feel what you feel.

I think there will always be some level of symptoms and even when the drugs are doing a really good job, there may be something that ariises that hasnt happened before that cause a level of discomfort.
Ive had Ruby on lyrica for just over a year now and 95% ish of the time she is her normal happy self with no excessive symptoms or pain in her face BUT occasionally something will trigger something.
The heat is one that causes her discomfort and if we oversleep and go past the 12 hour mark she will wake up in the old style headrubbing and scratching.

Sometimes it takes a while to find the right level of meds (3-4 months) for us and then had to change the CSF med again this year but you will find it :)

Good Luck!

Cemilie
19th September 2010, 10:37 PM
Thank you for your kind words:)
I really think this is difficult. She has now some scratching, but at most times I can distracte her. What also bothers med is that she sometimes find it difficult to get a rest. She lies down but here head is up, she is a tensed position and she is breathing heavaly with her tung out(not quite shure of the english word here, the dictionary said "gasp, pant, wheeze") . At least, it is quote obvious that she is uncomfortable.

I will talk to the vet tomorrow about giving her neurontin every 8 hours. I found the link at rusbridges website http://www.veterinary-neurologist.co.uk/syringomyelia/docs/treatalgo.pdf
I wonder if anyone can tell med what CSF stands for here?

Pamela Warrington
19th September 2010, 11:01 PM
Sorry to hear Frida has SM, I just found out not to long ago that my sweet Isabelle from her MRI has SM, although she has a very moderate case for being 6 years old. They only have her on a very small dose of 50mg twice a day of gabapentin and 0.6 cc of Omeprazole 4mg/ml 1 oz once daily. I notice that Isabelle will sleep on her back with her head back and she seems comfortable, I was also told this helps with the flow of the fluid and was told if she is having a bad day place her that way for awhile. When she started her medication it was no more than a day or two and I got my baby girl back. She was back to having us love on her and playing catch with her toys and of course always laying her head on my lap, or following me where ever I go in the house. I hope you will find what works and helps best in your situation also. Dr Wayne L. Berry came highly recommended very intelligent man wise, was very comfortable with him and his staff. I live in California he is located in Irvine Ca and I know he has had people travel from all over to see him. Take care and may Frida feel better soon.

Blessings,
Pamela:hug:

Cemilie
19th September 2010, 11:18 PM
Thank you for your nice words Pamela :-)
And for you letting me know about your vet and the medication thath works good for you. Hopefully I will find a doze and medication that works good for Frida also:)

Love my Cavaliers
20th September 2010, 02:32 AM
I will add too that I am sorry that your baby has SM. My Riley was diagnosed 2+ years ago. She had decompression surgery after her diagnosis and is only on prednisone right now. She is doing really well. I hope Frida gets there some day. One thing I was thinking about with Frida is to maybe get her a raised water and food dish. Riley has no problem with it, but a lot of SM dogs seem to like to keep their heads elevated. I also don't know if Frida has trouble jumping at all, but Riley definitely has weakness in that area. I bought her some steps to use to get up on chairs, the bed, and the sofa. She LOVES using them and just walks right up. Even Madison, her half-sister who does not have SM likes to use them. I hope you can get her medication adjusted so that she is more comfortable and that she and you can enjoy a long, happy life together. Please ask lots of questions and always tell us how she is doing.

Cemilie
20th September 2010, 09:52 AM
Thank you so much Bev for your words and concern. I tried to raise the water for her, and at the same time I kept another dish beside that was not raised, and she only used the one on the floor. I have now just had the one on the floor after this, but I can see that things changes for her and I will try to raise it again. It is not much raising it needs really. The small step was a smart thing, I will find something to place beside the sofa. She does not seeme to bother at the moment, but I do know that jumping is not good for her.
She sometimes have trouble getting relaxed, finding a good position, and then she is moving around a lot - and finally falles asleep somewhere.

Kate H
20th September 2010, 01:37 PM
[QUOTEI wonder if anyone can tell me what CSF stands for here?[/QUOTE]

As no-one else seems to have answered this query, I will say that CSF stands for cerebro-spinal fluid - the fluid that comes up the spinal cord, circulates round the brain and then goes back down the spinal cord. The problem with dogs with SM is that the flow of CSF is impeded by the Chiari Malformation at the base of the skull 'plugging' the top of the spinal cord with the bottom of the brain, so that the CSF tends to accumulate in the ventricles/cavities within the brain and can't move freely back down the spinal cord, which causes abcesses or 'bubbles' of CSF (the syrinxes) in the spinal cord. Hope that makes sense!

Kate, Oliver and Aled

Cemilie
20th September 2010, 07:10 PM
Thank you Kate H for information! It makes sence - thank you!

lovecavaliers
20th September 2010, 09:55 PM
Hi I am just catching up on the posts and wanted to express how sorry I am to hear about Frida's diagnosis. It seems you are doing the very best for her right now and got some good tips from everyone.
I know on Jack's "bad nights" I often get him to settle by laying him next to me on his back and rubbing his chest until he falls asleep. It seems to really relax him:luv:
Please keep posting updates on sweet Frida.

Wishing you both the best,
Irene and Jack

Cemilie
20th September 2010, 10:51 PM
Thank you Irene for your nice words :)
You telling about laying Jack on his back is nice to hear. I have heard about this before aswell. Frida does not like that I touch her back, so we are instructing everybody not to touch her there. I can see that she sometimes choose to lay like that on her back but I am afraid to encourage her to do it, scared to "drive her" away from me. She has just now had a "long scratch" quite desperat on the sofa but I managed to destract her and now she settled down in my lap.

I hope it is allowed, here is a picture of my Frida, taken in august
http://i303.photobucket.com/albums/nn151/Berlina74/041.jpg

And this is Frida an my other cavalier Tuva
http://i303.photobucket.com/albums/nn151/Berlina74/124.jpg

I love them both very much :-)

lovecavaliers
20th September 2010, 11:42 PM
They are both precious and beautiful!

As far as the laying on the back; do what is best for Frida, each dog is different and you know what works best for her:flwr: