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Thread: Reality Check

  1. #21
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    Quote Originally Posted by Love my Cavaliers View Post
    Just my two cents again, but when Riley was diagnosed, both neurologists diagnosed her SM as advanced and severe. As I mentioned before, her syrinxes were wide and covered her entire spinal cord as well as being complicated by a large cerebellar cyst (which one of the neurologists would not touch - he wanted the other one to do it because it was a very complicated surgery). She had foramen magnum decompression surgery with a titanium mesh impant to reduce the incidence of scar tissue. Medication given to her before surgery had no effect on her symptoms, but the prednisone she takes now (post-operatively) controls her symptoms very well.

    Unfortunately there's no guarantee with surgery. Maybe Riley was one of the lucky ones. If so, I am very thankful and consider her my miracle dog. She could barely walk before surgery because her balance was so bad and she had weakness in her rear legs. She still has imbalance and some weakness issues, but she is managing much better post-operatively than I ever thought she would or could.

    I still wouldn't discount the idea of a second opinion. It's very easy to get a disc of the MRI and take it or send it to another neurologist. It was very helpful for me to hear both neurologists have the exact same opinion about Riley's diagnosis and prognosis and made the decision to proceed with surgery that much easier. At least it might give you more information about the pros and cons of surgery for Luka and what you could realistically expect it to do for Luka. And yes he would almost for sure be on meds post-op also. I don't think I've ever heard of a dog not on post-op meds. Once the damage is done, it's done. The surgery is done to hopefully stop the progression and make it worse.

    Lots to think about. And you just want the best for Luka - we all know that. There's no right or wrong. You just have to get the best information you can and then follow what your heart says is best for your dog. Good luck.
    Actually I've heard of a neurologist in the usa (probably who jack saw if titanium mesh was involved) that says some do not require medication. I do know one personally he uses that the syrinx has almost disappeared. Except that one, I think that is all I heard not needing medication.

    Ella was 3 almost 4 when diagnosed and had FMD surgery (without titanium mesh or any cranioplasty) and she developed scar tissue which I found out 6 months after surgery. I'm not sure in the UK but here in the usa there are some neurosurgeons so I hear of more with surgery here. Later on rileys symptoms reminded me a lot of Ella.

    I opted for surgery due to her age and she was progressing fast even with medication. Her second MRI showed some progression also. I will tell you after her second MRI, her neurologist did not give a good prognosis. Maybe 3 months who knows. I was then faced with the option for a second surgery. This would have been extremely complicated and so I waited. I had to put ella to sleep may 2 but it was not due to SM, even though it was part of my decision.

    So the 3 months were more like 8 and who knows it could have been years. She had changed to lyrica and like riley was also on prednisone. She did not lose ability of her hind legs but she was declining and some days would not move and I often carried her. That might be why I say what I do about the MRI because I saw that medication did help but I'm not sure without surgery I would have those months.

    Riley gave me hope. Another member of the forum had an mri that dr. Shores said was one of the worst he's seen. Down complete spine multiple syrix (plural) but when they played before his surgery, he would run after a ball and ella wouldn't move. Corey scratched and ella didn't as much. So on the outside I don't know who was worse but his image might have been.

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    Anne Proud mother of Elton 5 and Angel Ella

  2. #22
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    Quote Originally Posted by anniemac View Post
    Actually I've heard of a neurologist in the usa (probably who jack saw if titanium mesh was involved) that says some do not require medication. I do know one personally he uses that the syrinx has almost disappeared. Except that one, I think that is all I heard not needing medication.

    Ella was 3 almost 4 when diagnosed and had FMD surgery (without titanium mesh or any cranioplasty) and she developed scar tissue which I found out 6 months after surgery. I'm not sure in the UK but here in the usa there are some neurosurgeons so I hear of more with surgery here. Later on rileys symptoms reminded me a lot of Ella.

    I opted for surgery due to her age and she was progressing fast even with medication. Her second MRI showed some progression also. I will tell you after her second MRI, her neurologist did not give a good prognosis. Maybe 3 months who knows. I was then faced with the option for a second surgery. This would have been extremely complicated and so I waited. I had to put ella to sleep may 2 but it was not due to SM, even though it was part of my decision.

    So the 3 months were more like 8 and who knows it could have been years. She had changed to lyrica and like riley was also on prednisone. She did not lose ability of her hind legs but she was declining and some days would not move and I often carried her. That might be why I say what I do about the MRI because I saw that medication did help but I'm not sure without surgery I would have those months.

    Riley gave me hope. Another member of the forum had an mri that dr. Shores said was one of the worst he's seen. Down complete spine multiple syrix (plural) but when they played before his surgery, he would run after a ball and ella wouldn't move. Corey scratched and ella didn't as much. So on the outside I don't know who was worse but his image might have been.

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    What was the cost of Surgery? Is there a long recovery time? What else should I know? Pro and Con's? Did you have pet insurance? What kind? Knowing what you know now, would you have opted for surgery again?

    I don't know Annie from the sounds of it I would have done exactly what you did, I keep asking myself about the quality of life.

  3. #23
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    My blondie has a syrinx all the way down her spine. Shes a happy dog 99 percent of the time. We actually took her for a 3 hour hike today. we live day to day and dont know what the future holds but i try to folliw my instincts . All u can do is be informed and do the best you can. Dont let any vet pressure you into anything if you dont feel right about it . Anyhow; the length if a syrinx doesnt necessarily determine the severity of the aymptoms. There are dogs with large syrinxes that r asymptomatic and dogs with just the cm and no syrinx that are very symptomatic and everything in between. dont see in your case why they could possibly advice against surgert since its shown to help with quality of life in many cases even severe ones. As far as i know there havent been any cases ib which sm was too severe to do a surgery, if anything the surgery would be the only shot at a longer life in severe cases. Its a tricky thing though but id definitely look at your dogs symptoms more than blindstaring on his mri. Hes very young! It is also absolutely normal to be on a medical regimen after surgery, its like that for most.
    Mom of Blondie aka The Monster, my furry daughter and loyal friend!!!!!!!!

  4. #24
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    The extent of the syrinx generally isn't as important or significant or as linked closely to pain as the width and whether the syrinx is lopsided. Presumably it is lopsided and/or wide enough at points to be causing the symptoms you see. But 'bad' MRIs are relative -- some of the worst syrinxes on MRIs actually cause the dogs very little and sometimes, no symptoms at all. If you haven;t, do read Clare Rusbridge's FAQ on SM: http://www.veterinary-neurologist.co.uk/faq.htm

    Why do some dogs with syringomyelia seem completely normal?
    Not all dogs with syringomyelia have clinical signs. The presence of signs is correlated to the cross-sectional width of the syrinx and the area of the spinal cord damaged. Signs of pain, scratching and / or scoliosis are more likely with wide and asymmetrical syrinxes.
    Very few neurologists shunt. Some do a combo surgery but many (like Dr Rusbridge) feel shunts cause more problems than they help as they tend to need to be redone, get infected etc. I would def get a second opinion on a surgery. Not sure who else is in your region but personally, I probably wouldn't opt for a surgery with a shunt as I am not sure there's any evidence that this helps.

    I would guess Luka could be a good candidate for surgery which would likely halt progression and reduce symptoms. Personally I remain unconvinced that there's too much ultimate difference between a regular decompression and using the titanium mesh (a more invasive and complicate surgery). A lot more comparative, long term studies need to be done.

    A dog under 2 showing symptoms is generally one with more severe SM that is likely to progress faster. You can definitely make the choice of managing with meds. It is very hard to predict how long Luka might go on meds vs surgery.

    If I were in your shoes I would probably opt for surgery because Luka is young and fairly strongly symptomatic with a large syrinx. But I haven't opted for surgery with my own three who are mildly symptomatic, all now between 5-7 years old. For me the decision is a case by case basis, and would primarily be based on age and symptoms and likely prognosis based on MRI results and existing symptoms. Other considerations would be cost. But I can say that depending on how long a dog lives and age at diagnosis, an owner will likely pay as much or nearly so, over time for medications as for surgery.

    It is a deeply personal decision and there is no right or wrong choice.
    Karlin
    Cavaliers: Jaspar Lily Tansy Libby Mindy
    In memory: Lucy Leo
    Cavalier SM Information site:www.smcavaliers.com

  5. #25
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    Quote Originally Posted by goda View Post
    What was the cost of Surgery? Is there a long recovery time? What else should I know? Pro and Con's? Did you have pet insurance? What kind? Knowing what you know now, would you have opted for surgery again?

    I don't know Annie from the sounds of it I would have done exactly what you did, I keep asking myself about the quality of life.
    Yes I would have done surgery again. Ella's neurologist had the same view as Karlin about the titanium mesh. He wanted more long term research but he did offer that procedure which was $1000 more. He was unsure if the extra risk and cost was worth it in the long run. This is what a neurologist said who some have strong feelings that he is too agressive.

    Even though he mentioned all of this, I would still do it again with the same neurologist even with developing scar tissue. I felt he weighed more on each dog and was not pushy when it came to surgery. It is an extremely personal decision.

    Ella had more of what Karlin described in terms of her syrinx. I would look at the link she gave because Dr. Rusbridge has a lot of very helpful information. I also agree that age plays a big factor and given Luka's age, I would seriously consider surgery. Even though Ella was 3 1/2, there were symptoms I brought up to her vet years before.

    Ella was at the point of hiding, not wanting to be touched, constant head shaking, not running after a ball because I guess her mobility was suffering and it was not getting better with medication and I felt that each week was a lot worse. I didn't feel she had much of an alternative. That's just me.

    Ella did have insurance which did not cover heriditary conditions (don't recommend!) so it didn't help.

    Cost of her surgery I think was over $3000. Can't remember but I'm still paying it off.

    Recovery time, she was restricted for 4 weeks and then for another 4. I know the first few days was obvious pain and in her kennel but she "recovered" fairly quickly but she still had to be restricted which was very tough. I would recommend longer better.

    It took me a couple of weeks to decide but its good you are asking these questions. By the way, my step-father is a radiologist and has seen several MRI's but he just said thats what the neurologist and you are for in making the decision.
    Anne Proud mother of Elton 5 and Angel Ella

  6. #26
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    Quote Originally Posted by anniemac View Post
    Yes I would have done surgery again. Ella's neurologist had the same view as Karlin about the titanium mesh. He wanted more long term research but he did offer that procedure which was $1000 more. He was unsure if the extra risk and cost was worth it in the long run. This is what a neurologist said who some have strong feelings that he is too agressive.

    Even though he mentioned all of this, I would still do it again with the same neurologist even with developing scar tissue. I felt he weighed more on each dog and was not pushy when it came to surgery. It is an extremely personal decision.

    Ella had more of what Karlin described in terms of her syrinx. I would look at the link she gave because Dr. Rusbridge has a lot of very helpful information. I also agree that age plays a big factor and given Luka's age, I would seriously consider surgery. Even though Ella was 3 1/2, there were symptoms I brought up to her vet years before.

    Ella was at the point of hiding, not wanting to be touched, constant head shaking, not running after a ball because I guess her mobility was suffering and it was not getting better with medication and I felt that each week was a lot worse. I didn't feel she had much of an alternative. That's just me.

    Ella did have insurance which did not cover heriditary conditions (don't recommend!) so it didn't help.

    Cost of her surgery I think was over $3000. Can't remember but I'm still paying it off.

    Recovery time, she was restricted for 4 weeks and then for another 4. I know the first few days was obvious pain and in her kennel but she "recovered" fairly quickly but she still had to be restricted which was very tough. I would recommend longer better.

    It took me a couple of weeks to decide but its good you are asking these questions. By the way, my step-father is a radiologist and has seen several MRI's but he just said thats what the neurologist and you are for in making the decision.
    Thanks this has been super helpful. We have been discussing surgery at home, not yet with the vet- we have a follow up appointment with her June 10th.

  7. #27
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    Quote Originally Posted by Karlin View Post
    The extent of the syrinx generally isn't as important or significant or as linked closely to pain as the width and whether the syrinx is lopsided. Presumably it is lopsided and/or wide enough at points to be causing the symptoms you see. But 'bad' MRIs are relative -- some of the worst syrinxes on MRIs actually cause the dogs very little and sometimes, no symptoms at all. If you haven;t, do read Clare Rusbridge's FAQ on SM: http://www.veterinary-neurologist.co.uk/faq.htm



    Very few neurologists shunt. Some do a combo surgery but many (like Dr Rusbridge) feel shunts cause more problems than they help as they tend to need to be redone, get infected etc. I would def get a second opinion on a surgery. Not sure who else is in your region but personally, I probably wouldn't opt for a surgery with a shunt as I am not sure there's any evidence that this helps.

    I would guess Luka could be a good candidate for surgery which would likely halt progression and reduce symptoms. Personally I remain unconvinced that there's too much ultimate difference between a regular decompression and using the titanium mesh (a more invasive and complicate surgery). A lot more comparative, long term studies need to be done.

    A dog under 2 showing symptoms is generally one with more severe SM that is likely to progress faster. You can definitely make the choice of managing with meds. It is very hard to predict how long Luka might go on meds vs surgery.

    If I were in your shoes I would probably opt for surgery because Luka is young and fairly strongly symptomatic with a large syrinx. But I haven't opted for surgery with my own three who are mildly symptomatic, all now between 5-7 years old. For me the decision is a case by case basis, and would primarily be based on age and symptoms and likely prognosis based on MRI results and existing symptoms. Other considerations would be cost. But I can say that depending on how long a dog lives and age at diagnosis, an owner will likely pay as much or nearly so, over time for medications as for surgery.

    It is a deeply personal decision and there is no right or wrong choice.
    Thanks! I've been slowly plucking through the FAQ.

  8. #28
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    When you asked knowing what I know now would I do it over again. Some may strongly disagree but even knowing that she would be givin her wings a year and a half later due to an obstruction (she had 70% of her intestines removed), I think I would. The reason is to see her eyes free from pain was worth it and I don't know what or if she would be like without it but I'm glad I did.

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    Anne Proud mother of Elton 5 and Angel Ella

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