3rd July 2011, 04:56 PM
Opinions on getting second MRI for CM with ?syrinx
Hi all, it has been over a year since Jack had his MRI and was found to have CM with ?pre-syrinx (he was 1 year ~5 months at time of scan). I had the MRI at LIVS with Dr. Marino recommending immediate surgery. I got a second opinion with Dr. West, who was against Jack having surgery and recommending medication managment. So I told myself I would give it a year and see how he does and re-scan him to see if this "pre-syrinx" has grown into an actual syrinx. Here I am over a year later and Jack is on 200mg gabapentin 3x's daily, 10mg omeprazole once daily and 500mg keppra 3x's day. Jack is 2 years and 9 months old, weighing ~21 lbs.
Jack still scratches and I can tell he has some periods of discomfort, however, overall I would say he is a happy dog, playing with his toys, the cat , going on walks and happily greeting visitors. I know any discomfort is not good, which is why we are scheduled to see the neurologist this month.
I am reluctant to put him on steriods as that is what has been suggested would be the next step if these current meds were not working. For some reason my current neuro is against Lyrica which I would rather try than predisone. I will speak to him again about this at our upcoming appointment or perhaps seek out yet another neurologist. Oh how I wish Claire was located in NY
I was wondering if there was any of you who had a young dog with CM MRI'd a second time and what the results were? I don't know if I should wait longer for the MRI or try and get it done this summer. The reason for re-scanning in my mind would be that if he does have syrinx formation,I would plan on surgery given his young age. However if it's still "just CM" I don't know what I will do. Has anyone done surgery on their dog with CM and no actual syrinx noted?
Penny's Mom, NYC
25th July 2011, 06:02 PM
I am sorry no one has responded and I might not be able to offer much information. I may send you a PM also, but Jack was pretty young when he got first MRI. Personally, I don't think I have ever heard of Dr. Marino not recommending surgery, but I think you did the wise thing and got a second opinion from Dr. West. If you don't think the medical management is doing as much as you would like, I might would consider a second MRI. If you felt Jack was being managed fine, I would feel differently. I have never heard of operating on CM only, but I just read my notes from Dr. Marino's interview.
"If the dog does not have any symptoms should an owner be worried if they learn their Cavalier has this condition?
If a dog has a cerebellar compression without the formation of syringomyelia and subsequent clinical signs, we do not consider the “abnormality” or the “variation of normal anatomy” to be pathologic and therefore do not recommend surgery. However, if there is a compression significant enough to altar CSF flow and result in syrinx formation, we absolutely recommend surgical intervention to restore the normal physiologic flow pattern of the CSF."
I did not expect this answer but it looks like here he would not recommend surgery for all cases. Maybe first think about how Jack is being managed and if you don't see the improvements you would like, then maybe consider a second MRI. That doesn't mean you would have to commit to surgery but it may give you an idea about progression?
Anne Proud mother of
and Angel Ella
25th July 2011, 06:16 PM
I want to try lyrica too.. We r going to c dr west the 12th. Let me know what he says! Also about the frontline thing... Personally i think recheck mris r a good thing.. Weve done 2 so far, and thinking of doing a 3rd next year... I know Blondie has syrinx so thats diffrrent.
Mom of Blondie aka The Monster, my furry daughter and loyal friend!!!!!!!!
25th July 2011, 08:42 PM
I don't have alot of advise to give you but to say that I am in the same situation as you.
My little man was scanned at 14 months old as he has pain episodes and obvious discomfort and after my experience with my little lady I wouldn't wait and got him scanned.
He has CM and very dialated ventricles but no sign of a syrinx and at the time Dr Rusbridge advised that we re scan in 12-24 months and that we start on Diuretics which have helped him a great deal with the pain, He does still scratch alot though!
I will be getting him scanned again this year (he will be 3 in December) but the only difference that will make to me is that I will have conformation of whether the diuretics and early intervention have actually done anything or not!
Because surgery isn't a choice of mine its not as much of a necesity to get it done but I just want to know!
Ruby - my stunning soul mate who defies the odds every day
Charlie- my angel at heart and devil at play
25th July 2011, 10:41 PM
Hi Annie, Lynn and Karen,
thanks so much for your feedback.
Annie, Dr. Marino strongly suggested surgery on Jack after the MRI last year, he felt his "pre-syrinx" was very significant and that the surgery should be done within a month or two to avoid serious irreversible damage
I guess he only says to avoid it if there is no syrinx or pre-syrinx. THis whole pre-syrinx thing is strange to me because I don't hear many other dogs diagnosed with it and Dr. West said he couldn't see it, although Marino has more experience with viewing SM in MRI's. So very confusing to me.
Anyway, I took Jack to see his neuro (Dr. West) this past Sat. and he said that Jack presented better on clinical exam than one year ago (of course he wasn't on as much meds which he did acknowledge, however he said he had to really try hard to ellicit any pain in his neck and back, and strength and reflexes were good). I was very pleased to hear this He did say he is only seeing a "snapshot" of Jack and that if I felt he was getting worse than his medicines should be changed. I brought up Lyrica again and he was not at all against it.(this suprised me based on last time I brought it up, I was all ready to prove my case with my Clare diagram and stories of other cavies helped by it) He did tell me that in his experience, dogs had a higher rate of GI upset and ataxia on Lyrica than with gabapentin. He also warned that it can be quite costly since it's still on patent here in the US.
One med change he really wanted me to do was to change the formulation/delivery of his omeprazole which I had been getting compounded at a pharmacy they recommended. He now wants me to administer it in granules --> 8 granules to Jack daily. He said that with the compounded omperazole you cannot be sure exactly how much your getting in a pill and he wanted to be sure Jack was getting the exact dose prescribed. So I have been opening up a capsule of 20mg and counting out 8 granules. He said I could purchase gelatin capsules and "pre-package" them myself which I will be doing soon because counting out those little grains is driving me nuts. I don't know whether it is coincidence or not and I am probably jinxing myself but since getting these granules over the past couple of days, Jack seems less restless at night
As far as changing to Lyrica, we agreed to make one change at a time. So if no consistant improvement in a few months with this change in omeprazole delivery, I will think it's time to try Lyrica. He also gave me coedine to give to Jack if he has a really bad night but emphasized that if I find myself giving it more than 1x week to contact him because then we need to make a change to his regular meds.
Regarding re-scanning Jack, he said he doesn't feel a need unless the scan results will mean I will do surgery. Which at this point I won't,however like Karen I am curious to see if any syrinx has formed. I may put it off until the fall or winter at this point.
Lastly, Lynn I didn't ask about the Frontline bc last month my mother was watching Jack for the day and put it on him (she forgot that I had stopped using it) before walking him in a wooded area and unlike the other few times I put it on him, I didn't notice any increase in symptoms that evening or the days after, she placed it more on his shoulder blade area and less near the neck where stupidly I had put it before, so maybe that had something to do with it or maybe it was just luck that day. Either way with all my other questions/concerns I forgot to bring it up, sorry! Please let me know how your appointment on the 12th goes.
Penny's Mom, NYC
6th November 2013, 03:44 PM
I'm bumping this thread to the top for Ellie's mom - what is your first name?
Irene from NYC sees Dr. West for her boy, Jack. I don't think she has posted lately, but you can use the search function and find a lot of posts from her that discuss the various options, neurologists in New York, LIVS, Dr. West, etc.
I attended Dr. Dewey's session for vets at an AVMA convention a couple of years ago. Dr. Dewey is always going to recommend surgery. He states that CM/SM is a disease that requires surgery and it is not appropriate for medical management. (Dr. Shores had a similar opinion at his session that year - but he used a different surgical technique, swine tissue duraplasty instead of titanium mesh.) I presume that all at LIVS have the same approach as Dr. Dewey.
I've not had to deal with CM/SM, but if I did need to make a decision about this, I would definitely try to get opinions from both a "pro-surgery" specialist and a specialist with a more conservative approach. I would also read, read, read everything that I could find, including anecdotal experiences of pet owners. It can be an overwhelming decision, and there is a huge amount of information to take in, but I would not be rushed into a decision.
I have some thoughts about the MVD situation also, but I'll put those in a direct response to your thread.
Pat (in Atlanta)
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6th November 2013, 06:15 PM
Monica, I tried to respond to your PM but I kept getting logged off so figured I can respond here.
First I am so sorry to hear about Ellie. It is heartbreaking to deal with a possible case of CM/SM and then to add the heart issues is truly devastating. I have not yet dealt with mvd (knock on wood) therefore I can only share my personal experience with CM/SM. Jack will be 5 years old next month and I am still managing him on medications (he was MRI'd in May 2010 at almost 1.5 years old). In retrospect his symptoms were very apparent at even 6 months
I had him MRI'd at LIVS because I live in NYC and from what I read it was the best. I would still go there if I went for another MRI (which I have not had repeated) because they have a 3 Tesla MRI which is what is used for people, places like Animal Medical Center have an 1.5 Tesla MRI. Even Dr. West said to go back to where he was originally scanned if I choose to rescan.
I dealt with Dr. Loughin as well and only spoke to Dr. Marino via telephone to tell me all the results and his recommondations. He did not give me a choice of trying medication first and said I should do surgery within a few months to avoid paralysis. I freaked out because I had similar pros and cons to you. My primary vet put me in touch with Dr. West as he became friends with him during an internship at AMC.
So I still take Jack to Dr. West every year for a clinical evaluation. He is doing well. He takes a lot of meds (gabapentin, keppra and omeprazole, although doses have stayed the same for 3 years). He may not be a "normal dog" but I truly feel his overall life is happy. I even ask my close family members how they think he is doing, in order to get some prospective. True, his gait is slightly off but not sure if this is from the meds or disease progression. He continues to love people, smelling/greeting other dogs, playing with the cat and being a love bug. As of today I am happy with my choice to have not done surgery. When I was in your shoes I remember researching and talking to everyone who would listen about what I should do and what were their experiences. In the end it comes down to what you feel is right in your heart for you and Ellie. You love her the most and you will do what is right for her. The only advice I would give is to get at least two opinions before making any final decisions. Likewise, get Ellie on meds while you are researching to help her with symptoms in the meantime. Aftern my requesting to try medication, LIVS prescribed gabapentin for Jack at 100mg twice daily and from what I read it is usually given three times daily so ask them about that if you are prescribed that frequency. I didn't know at the time and was feeling down that meds werent working. Plus meds take tweeking, some meds work, some don't , dosages also can be varied.
I live in NYC and I would be more than happy to meet you so you can see Jack in person and talk to someone who has been in similar shoes. I will try to send you my private e-mail when the system allows me to respond to your PM.
Penny's Mom, NYC
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7th November 2013, 06:41 PM
Pat- Thank you, I do not think I would see Dr. Dewey. It seems that everyone at LIVS is very pro surgery. I do have an appointment with Dr. West 2 days after Ellies consultation at LIVS and it seems based on his response to Irene and his profile that he does take a more conservative approach. I am contemplating whether or not to get a third, "tie breaker" opinion from Clare, but am trying to take this 1 step at a time
Irene- Thank you, I am going into this consultation fully expecting them to say to leave Ellie there that day for surgery - which I am not going to do. I am so glad to hear Jack is doing so well on his meds. Has he experienced seizures? I am just assuming because he is on keppra. I will respond to your PM - but would love to meet in person to hear your experiences and of course to meet Jack.
7th November 2013, 07:00 PM
Also Irene, i sent you a private message. I do not see it in my sent messages so let me know if you received it! Otherwise, I will send you an email. Also, for the first year of Ellie's life we used frontline and she would go completely crazy on it. She would run around our entire apartment and roll on her back to try to get it off. My vet kind of brushed it off as nothing until I got it on video. We switched to revolution and she has been fine since. What issue's were you having with frontline and do you think it was related to the SM??