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ppotterfield
7th August 2009, 07:39 PM
A couple questions about SM:

Karlin wrote (not sure when as I copied and saved in a file folder) that "Clare Rusbridge and Geoff Skerritt have seen dogs' syrinxes improve (e.g. shrink and even disappear) on a CSF inhibitor like omeprazole, cimetidine or frusemide so I think this may be good practice for any affected dog to be on it from the start." Is this anecdotal or is included in a published report and/or part of an actual clinical trial. My Vets were interested. They said they would look but if any of you have the source an could pass it along to me that would be helpful.
There are references to Prilosec only being taken for a short course in some of the literature due to concern over side effects. Do you know whether there is any new information on any adverse effects from long-term use of Prilosec?
Do you know if proprioceptive deficits in the extremities are considered to be signs of disease that is fairly advanced even in the absence of other symptoms?
Thanks for all your help.

Love my Cavaliers
8th August 2009, 01:39 PM
Wish I could help you with the answers you're looking for. First let me say that I'm so sorry you received an SM diagnosis for BudBud. Unfortunately, you've joined the club that no one wants to be a member of. The only good thing is that dogs with SM who have owners who frequent CavalierTalk are extremely lucky in that we all promise to give our dogs the best care and love we can. Riley was diagnosed with severe and advanced SM a year ago. Her main problems are related to her vestibular system and are now being controlled by 5 mg Prednisone/day. Are vestibular problems similar to proprioception? I know that's what the police are testing when they ask a suspected DUI to walk a straight line, etc.

I know that long-term use of Prilosec in humans can interfere with calcium absorption. I don't know if the same mechanism is at work in dogs or if calcium deposition in dog's bones works the same as humans. The reason that I decided to answer your question (even though Riley is not on Prilosec, but she is on Pepcid every day) is that even though long-term use of some medications have serious side effects, it is sometimes more humane to use them. Riley was having serious imbalance issues and was constantly falling, leaning agaisnt walls to walk and losing her balance many times a day. She is now on prednisone and is like a new dog. Her quality of life has improved so dramatically. She has her liver checked every 3-6 months and someone else on the forum said to watch for thinning bones. This may be related to the Pepcid she has to take every day to counteract any stomach upset from the daily prednisone. I don't know if I'll ever be able to wean her from the prednisone, but I am just so happy to see her having a more normal quality of life, that even if her life is shortened from steroid use, I know that she's been a happier dog. Basically, I just wanted to offer my perspective on the risk/benefit of some drugs. In my mind, for Riley, the benefits of steroid use far outweigh the risks. I hope this helps you even a litlle bit. Good luck with BudBud. We're here to help you get through it.

Margaret C
8th August 2009, 03:31 PM
A couple questions about SM:

Karlin wrote (not sure when as I copied and saved in a file folder) that "Clare Rusbridge and Geoff Skerritt have seen dogs' syrinxes improve (e.g. shrink and even disappear) on a CSF inhibitor like omeprazole, cimetidine or frusemide so I think this may be good practice for any affected dog to be on it from the start." Is this anecdotal or is included in a published report and/or part of an actual clinical trial. My Vets were interested. They said they would look but if any of you have the source an could pass it along to me that would be helpful..
I did not answer immediately because Karlin and Nicki know more about medication than I do, but I have certainly heard Geoff Skerritt say frusemide can make syrinxes disappear, and Clare Rusbridge writes that some owners report that symptoms improve......
http://www.veterinary-neurologist.co.uk/part4.htm#35



There are references to Prilosec only being taken for a short course in some of the literature due to concern over side effects. Do you know whether there is any new information on any adverse effects from long-term use of Prilosec?
Do you know if proprioceptive deficits in the extremities are considered to be signs of disease that is fairly advanced even in the absence of other symptoms?
I'm afraid I can't help with the Prilosec question.

My understanding is that proprioceptive deficits indicate permanent neurological damage and this was one of the symptoms that they were looking for at the RVC pain trial.

I'm so sorry about Buddy, it is very hard distressing to know that your dog has such a painful condition.

I agree with 'Love my Cavaliers'....... My aims is for my three SM boys to have as normal a quality of life as possible, even if their lives are shortened by the side effects of the drugs they are on.

Nicki
8th August 2009, 05:11 PM
I don't have actual research stating that syrinxes have reduced/disappeared through use of a CSF inhibitor - I *think* at present it may be anecdotal - {possibly due to not many dogs having follow up MRI scans? }

Not sure if Karlin has anything - she should be around within the next few days.


There doesn't seem to be any new research into the long term use of prilosec on dogs - TBH I doubt that there will be any carried out - it would not be cost effective for the drug companies as it is for a limited market.

I do have information kindly provided by
Gregg Kortz DVM - my vet contacted him. He's based at the University of California, Davis.

He recommended Omeprazole at 0.5 mg/kg once daily. He kindly sent research studies too - I can forward these by e-mail if that would be helpful? {Please PM me your e-mail}

If concerned about the long term use of this drug, he recommend pulse therapy, with 4 to 6 weeks of therapy followed by a one to two week of no therapy and then restarting the drug.

Teddy has been on it for coming up 2 years now - as 'Love my Cavaliers' and Margaret have said, comfort is the prioirty - quality of life is more important that quantity.


Proprioceptive deficits {Abnormal body positions or movements due to a lack of normal perception. Loss of proprioception causes abnormal placement reactions in the limbs (legs), abnormal limb position at rest (legs crossed or paws turned under), and abnormal wearing of the toes.}:

general causes are disorders of the brain-stem, spinal cord, nerves outside of these structures and brain disease.

My understanding and experience of both dealing with this condtion and trying to support others to do the same, is that proprioceptive deficits would indicate advanced disease - I'm so sorry if this is the case with Buddy.

Sadly all we can do is keep them as comfortable as possible for as long as possible - and help them to enjoy a good quality of life.

Thinking of you and Buddy.

ppotterfield
10th August 2009, 03:38 AM
Riley was diagnosed with severe and advanced SM a year ago. Her main problems are related to her vestibular system and are now being controlled by 5 mg Prednisone/day. Are vestibular problems similar to proprioception? I know that's what the police are testing when they ask a suspected DUI to walk a straight line, etc.



Bev:

I think proprioception and vestibular problems are related. In Buddy's case there is not ataxia (uncoordinated movements) but the neurologist found proprioception (or proprioceptive deficits, I think, more precisely stated) based his clinical exam -- when he turned Buddy's paws under he did not immediately flip them back -- he lacked a sense of position in a sense. This is not something I have ever observed and it must, at least at this point, be fairly subtle because our PSOM vet only observed this in one limb and our general Vet did not see it all. When we go back to OSU in a month he will see the neurologist again, I hope, and I will get a chance to talk with him about it then.

Hugs to all your crew but, of course, especially Riley.

ppotterfield
10th August 2009, 03:48 AM
My aims is for my three SM boys to have as normal a quality of life as possible, even if their lives are shortened by the side effects of the drugs they are on.


Thank you, Margaret. I do need as I go through this process to remember that. I have been questioning the long-term use of the Prednisone but will accept that if it is what is needed based on Buddy's neurological findings at this time. I am just smart enough and well-read enough to be dangerous as times, but I would not have it any other way :).

Tania
10th August 2009, 03:37 PM
We were told in December 08 Molly would not be with us much longer
as she has syrinx in her neck area and a large pre-syrix on her spinal cord.
We switched to Clare Rusbridge who prescribed Cimetidine. Molly had another scan a few weeks ago, it would appear the Syrinx has remained the same and the pre-syrinx has gone completely. Mollys pre-syrix scan is illustrated on Clares website (the first one). We have managed to drop Mollys weight by a kilo, she is happy and out of pain. Even though we know we are not out of the woods and we watch her like a hawk thank goodness we went to see Clare!

Karlin
10th August 2009, 05:40 PM
Tania thanks for that information -- I didn't know this about Molly.

On CSF and syrinxes -- nothing has been published but I got these stories directly from both Geoff Skerritt and Clare Rusbridge. Both had seen at least one syrinx structure disappear, as well as symptoms like scoliosis. I had mentioned Geoff's comments to Clare, who said she too had seen this on occasion and in particular mentioned one case where a syrinx or pre-syrinx disappeared (that may be Molly? But I think it was a young dog and a full syrinx). My vets as well were very interested in this. I have suggested that perhaps a recommendation on using CSF in the basic info on SM and treatments could indicate that it has been seen to do this in at least some cases to raise more awareness on why it is worth treating even if a dog does not seem to be in pain. I am sorry I discontinued Leo on a CSF drug for a couple of years -- now I have him on cimetidine twice daily and Lily (very small syrinx) once daily.

On Prilosec -- no, no long term studies that I know of. Clare's treatment document lists the tests that she recommends being done to check that all is normal as dogs continue on the various CSF drugs or gabapentin etc. There was concern that long term use of Prilosec can cause stomach cancer in humans but I have seen that since challenged anyway. Dogs lead far shorter lives so I would definitely opt for a good medication that works to bring the best quality of life.

ppotterfield
10th August 2009, 09:37 PM
Thanks, Karlin. I will pass this along. I will also suggest that perhaps Dr. Cole email Clare Rusbridge. I did receive some information from Nicki on the Prilosec which I will pass along as well.

Thanks to all of you.

Karen and Ruby
10th August 2009, 10:56 PM
Ruby has been on the Cimetidine since May and we will be having a follow up scan (hopefully) a year on in May 2010. Thats if nothing uptoward happens in the time between now and then. Ruby was never a typical SM cav - ie she never showed symptoms that were classically related to SM. It was me and my gut that forced a scan and it turned out to be bad news. Her syrinx is already set far on at 6mm however apart from her slow days and obvious uncomfortable demeanor (up until she started on the Gabapentin) there was nothing to suggest it was that far on. Clare was very very suprised that she had it let alone the size it had become.
Im hopefull but not optimistic about the Cimetidine making a difference- i certainly dont expect the syrinx to have shrunk!! Im hopeful that it hasnt grown and if that is the case i will be upset that we didnt push to get a scan any earlier!
it would be helpful if more people did get follow up scans as it would help those wonderful people in their research for these drugs as they arent being funded for testing as far as im aware.
As far as i remember from the conversation I had with Clare all drugs being prescribed for SM cavs are really only through trial and error and word of mouth from affected Cavs.
Anyway Heres Hopeing!!!!

Karen and Ruby

Tania
11th August 2009, 12:03 PM
I am keeping my fingers crossed for you. Molly was similar, she
didn't show any of the classic symptoms at all, the first specialist
we saw (joint spcialist) was wrong about her future (he said no hope) at least he diagnosed Molly with SM, which enabled me to make the decision to go to Clare. I am going to make Mollys latest report from her follow up
scan available later, at least you will be able to see the information first
hand. I am very hopeful for Ruby, you couldn't be in better hands.

Tania
11th August 2009, 07:09 PM
I didn't realise I was unable to attach to posts, but the main part of the reports reads: "Molly images are a little unusual an extensive pre-syrinx in 2 main areas (from C2-C4) and theracolumber (from T3 to L2) Syringomyelia centred over C2/C3 idsc space which is 3mm wide and is asymmetrical extending into the left spinal cord dorsal horn.

We used the Cimetidene 3 times daily for 6 months, the next report read:

The syringomyelia has not progressed and no evidence of pre-syrinx could be found! The SM had not progressed.

We had problems keeping Mollys weight down, we have put her on a natural diet and she has lost a kilo which of course will have also helped.

I hope this of interest and help! Molly won pretiest girl in a fun dog show a couple of weeks ago.

Karen and Ruby
11th August 2009, 08:19 PM
Well that has certainly given me some hope- am I right in thinking that Molly was also quite far on when diagnosed? If so then to have not progressed any further really is fantastic news.
And of course she won, she is beautiful with more courage than all the others put together!!

Karen and Ruby

Kate H
11th August 2009, 10:19 PM
Talking about this to one of the neurologists at Chester Gates, she said that Geoff Skerritt has found that zapping the syrinx with a CSF inhibitor (furosemide or similar) is only effective on dogs already displaying symptoms. It wouldn't have worked, for instance, on Oliver, who was diagnosed two years ago but had no symptoms (this was in some ways a relief to hear - I'd hate to feel we'd missed out on doing something that might have helped). Presumably (I'm guessing here!) it reduces the lateral spread of the syrinx, which is what causes the damage and pain. Oliver's syrinx was small and narrow.

Kate, Oliver and Aled

Tania
12th August 2009, 02:05 PM
Molly was displaying symptons from a tiny pup, the confusion arose because she has a bad knee, hips and front shoulder ligaments. We almost got to the stage where she was unable to walk at all. This is why we orignally went to a specialist who dealt with these conditions. As soon as Molly was treated by Clare, everything changed for the better.