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Reality Check

goda

Well-known member
Luka's discharge paperwork came and it basically states the following:

Luka's first syrinx spans C1-C7 the entire cervical spine, there is one in the top middle thoracic cord, the is one at the spine, and 3 small dialations at the top of the lumbar spine. There is a dilation of the ventricles, mild crowding of the cerebellum and a slight medullary kink.

Those of you who have had experience with this disease, I am thinking that with this extensive damage to his spinal cord it is not a benefit to do surgery because even if they shunt the two large areas he will still have to take an extensive drug regiment.

Also Dr Kline says that he could still have a few years, those of you who have gone through this what should I expect- what is a reasonable lifespan for Luka?

I don't think accupuncture would be benefitial to him because there is so much damage to the entire spine.

Thank you.
 
I'm so sorry. Did your neurologist advise against surgery? Riley's syrinx was very wide and covered her entire spine and was complicated by a very large cerebellar cyst, which they thought they would have to shunt. Two neurologists thought her best chances for a longer healthier life were through surgery, which she had three years ago.

I was just wondering if your neuro gave you any advice - pro or con surgery. You can always take the MRI disc for a second opinion - or even send it to Clare Rusbridge. For a fee, i think she will do a consultation.

Riley is still on prednisone and will be for life, but that's o.k. with me. She's happy and running around, still damaged, but a happy girl nonetheless.
 
Not really.

I'm so sorry. Did your neurologist advise against surgery? Riley's syrinx was very wide and covered her entire spine and was complicated by a very large cerebellar cyst, which they thought they would have to shunt. Two neurologists thought her best chances for a longer healthier life were through surgery, which she had three years ago.

I was just wondering if your neuro gave you any advice - pro or con surgery. You can always take the MRI disc for a second opinion - or even send it to Clare Rusbridge. For a fee, i think she will do a consultation.

Riley is still on prednisone and will be for life, but that's o.k. with me. She's happy and running around, still damaged, but a happy girl nonetheless.

She really didn't advocate for it and I understand why because you cannot shunt the entire spinal cord, and his cervical syrinx spans from C1-C7, which is the entire cervical curvature. The next is the most top of the thoracic curvature, and the dialations inside his spinal cord that have nowhere to go but bigger. They won't shrink.

At this point I think we are just managing his pain. :(

Thanks though it helps.
 
I'm confused when you talk about surgery because you talk about shunt surgery rather than FMD - decompression surgery. Have you specifically discussed FMD surgery with Dr. Kline? I'm not advocating for or against surgery, just trying to make sure that you understand and have considered and discussed all of the options.

FMD I believe would aim to prevent any increase in the size and/or number of syrinxs (what is the plural of syrinx anyway?) and might also help with controlling the dilated ventricles, etc., since the CSF would be able to flow more freely after the surgery. My understanding is that neurologists are more in favor of surgery with a case like Luka's - younger dog with extensive damage - and less inclined in an older dog with less damage where the damage might be much more slowly progressive and the situation more easily managed by medication. With a younger dog with a lot of damage and symptoms, the aim of surgery is to prevent further deterioration and allow medical management for a much longer period of time versus waiting until the damage is such that it simply can't be medically managed. (As you said, there is nowhere to go but bigger....)

Regarding acupuncture, my understanding is that it might help with pain management despite the extensive damage as it somehow works on the "pain nerve centers" (I just made that term up!) rather than actually doing anything to directly help or improve whatever damage is causing the pain. I have used a certified a/c veterinarian for three of my Cavaliers over the years - they were all geriatric and two of them had significant disk disease and one had DM (degenerative myelopathy). The two with disk disease were helped tremendously as evidenced by lessened pain and much greater mobility. The one with DM was not helped at all by a/c. In each case, I gave an 8 week trial of a/c, and I continued with the two that were helped and was able to space out the visits longer. I finally stopped it with the DM girl but I was happy to give it a chance. It's something that you might want to consider a trial to see if there are results.

Just some thoughts - others might elaborate to validate or discredit these ideas!

Pat
 
I'm a little confused also. I don't know that much about shunts as fmd surgery but deciding on surgery has several factors. Some neurologists may see an mri image and decide but imo, it should be age, progression, reaction to medication, severity, symptoms.

I want to say that maybe if there has been damage done to the spinal cord, surgery will not reverse it but it can help with progression. Some neurologists will talk about surgery reducing size of syrinx etc. I think that's stretching it but it hopefully reduce pain and also progression. Maybe you should get a second opinion. I know you mentioned supplements for sm treatment so surgery is a complete extreme. Acupuncture is not intended to treat SM but can be used to treat pain. Ella had surgery, took several medications but I also sometimes would have her get acupuncture. However, I would never recommend alternative therapy as a treatment just as an addition.

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I am reading it again and you said with surgery still need to take drugs. That may be the case but still something many who have surgery do. Ella did not have a long syrinx but a short wide one located near the base of her skull and she took medication after surgery. Not sure how that relates but I do hope you get things managable. Thinking of you

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I mean Decompression

I'm confused when you talk about surgery because you talk about shunt surgery rather than FMD - decompression surgery. Have you specifically discussed FMD surgery with Dr. Kline? I'm not advocating for or against surgery, just trying to make sure that you understand and have considered and discussed all of the options.

FMD I believe would aim to prevent any increase in the size and/or number of syrinxs (what is the plural of syrinx anyway?) and might also help with controlling the dilated ventricles, etc., since the CSF would be able to flow more freely after the surgery. My understanding is that neurologists are more in favor of surgery with a case like Luka's - younger dog with extensive damage - and less inclined in an older dog with less damage where the damage might be much more slowly progressive and the situation more easily managed by medication. With a younger dog with a lot of damage and symptoms, the aim of surgery is to prevent further deterioration and allow medical management for a much longer period of time versus waiting until the damage is such that it simply can't be medically managed. (As you said, there is nowhere to go but bigger....)

Regarding acupuncture, my understanding is that it might help with pain management despite the extensive damage as it somehow works on the "pain nerve centers" (I just made that term up!) rather than actually doing anything to directly help or improve whatever damage is causing the pain. I have used a certified a/c veterinarian for three of my Cavaliers over the years - they were all geriatric and two of them had significant disk disease and one had DM (degenerative myelopathy). The two with disk disease were helped tremendously as evidenced by lessened pain and much greater mobility. The one with DM was not helped at all by a/c. In each case, I gave an 8 week trial of a/c, and I continued with the two that were helped and was able to space out the visits longer. I finally stopped it with the DM girl but I was happy to give it a chance. It's something that you might want to consider a trial to see if there are results.

Just some thoughts - others might elaborate to validate or discredit these ideas!

Pat

I meant decompression. Emotional distress doesn't make me think clearly.
 
My concern is that

I am reading it again and you said with surgery still need to take drugs. That may be the case but still something many who have surgery do. Ella did not have a long syrinx but a short wide one located near the base of her skull and she took medication after surgery. Not sure how that relates but I do hope you get things managable. Thinking of you

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The Syringes (plural of Syrinx) are large the large one runs the entire cervical curvature. In human terms it's the ENTIRE neck area, and there is another Syrinx right below so I don't know where they would stretch it too?

I need to read more about decompression, because with his extensive damage realistically I don't see many options.

We were just diagnosed on Friday and I am defin. playing catch up. From what I am lead to understand and I don't know about canine anatomy but I do know about human anatomy. FMD, removes bone, for one bone tissue is somewhat regenerative, is that the same case in Canines?

So at this point I need more information, especially from owners whose loved ones have have multiple Syringes, and their experience. I don't want to put Luka through a painful procedure that may not even help.
 
I meant decompression. Emotional distress doesn't make me think clearly.

Perfectly understandable! But know that decompression isn't intended to "shunt the entire spinal cord" or the "two large areas" - it is intended to correct the underlying physical condition that caused the syrinxes in the first place. The aim is to prevent any further damage (more and/or larger syrinxes) in order to hopefully keep the symptoms from getting worse. That is why meds are still generally given - to control the pain from the existing damage.

Anne reminded me of a second point - are the syrinxes long and narrow or long and wide? The width seems to be an important factor in the amount of symptoms from what I've read here.

Pat
 
Perfectly understandable! But know that decompression isn't intended to "shunt the entire spinal cord" or the "two large areas" - it is intended to correct the underlying physical condition that caused the syrinxes in the first place. The aim is to prevent any further damage (more and/or larger syrinxes) in order to hopefully keep the symptoms from getting worse. That is why meds are still generally given - to control the pain from the existing damage.

Anne reminded me of a second point - are the syrinxes long and narrow or long and wide? The width seems to be an important factor in the amount of symptoms from what I've read here.

Pat

They are mailing me the MRI photos which I am hoping to post, from what I remember the first one is wide and long, the next one is long, and the rest are wide.
 
They are mailing me the MRI photos which I am hoping to post, from what I remember the first one is wide and long, the next one is long, and the rest are wide.

I wouldn't post here because if you want other opinions on the mri its best to show a neurologist. It will just confuse you and you may get several "opinions". You have a lot to absorb and since the diagnosis was so recent, I'm sure you have a lot going through your head right now.

I know the mri can be very helpful and there is some truth to what pat said about location and width contributing to different symptoms or severity, but right now I would concentrate on noticing improvements with medication and getting information on types of surgery and others experiences. I spent several hours, months, analyzing ellas mri and figuring out her syrinx comparing it to others and it gave me a headache. I made the mistake of posting her mri somewhere and I had people contact me saying their cavaliers was worse concerned she was not on right medication etc. Karlin warned me and I wish I hadn't. You can have two similar mri images but there is more than just an image and I would not do it on a forum. Maybe send it to dr. Rusbridge or a specialist but not here.



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I'm so sorry about the diagnosis. However, I would follow Anne's advice and seek other opinions via neurologists experienced with SM. Definitely getting feedback from others on here dealing with this horrible disease is helpful, but for interpreting MRI scans I would stick with the docs:eek:

I think you will find many on here who have had the surgery and many who manage with medication. It is a very personal choice, that only you can make. I wish you all the best and please let us know how things go whichever path your choose for you baby.
 
I wouldn't post here because if you want other opinions on the mri its best to show a neurologist. It will just confuse you and you may get several "opinions". You have a lot to absorb and since the diagnosis was so recent, I'm sure you have a lot going through your head right now.

I know the mri can be very helpful and there is some truth to what pat said about location and width contributing to different symptoms or severity, but right now I would concentrate on noticing improvements with medication and getting information on types of surgery and others experiences. I spent several hours, months, analyzing ellas mri and figuring out her syrinx comparing it to others and it gave me a headache. I made the mistake of posting her mri somewhere and I had people contact me saying their cavaliers was worse concerned she was not on right medication etc. Karlin warned me and I wish I hadn't. You can have two similar mri images but there is more than just an image and I would not do it on a forum. Maybe send it to dr. Rusbridge or a specialist but not here.



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I wasn't going to post the pictures to get a second opinion. I am a nursing student whose taken anatomy and physiology, I understand what I am looking at. I just know it's something that would help me to be able to visualize what is going and might have helped someone else. Thank you for the suggestion though I won't post them here.

I know when I found out I googled for the image of other dogs afflicted. It helped me. Oh well.
 
I'm so sorry about the diagnosis. However, I would follow Anne's advice and seek other opinions via neurologists experienced with SM. Definitely getting feedback from others on here dealing with this horrible disease is helpful, but for interpreting MRI scans I would stick with the docs:eek:

I think you will find many on here who have had the surgery and many who manage with medication. It is a very personal choice, that only you can make. I wish you all the best and please let us know how things go whichever path your choose for you baby.

I don't want/need a second opinion. Thanks though. My intention wasn't for feedback on the MRI, it was so people could visualize what I was describing, as I am a person who is visual and most people don't understand what "spans the entire cervical curvature" means. *sighs*
 
I definately don't understand a lot but I do understand how hard this can be. I shed many tears, wanted help, answers, anything but I found a group of people that were there for me. I do know that there are several people on here that can offer support, tell you there experience, help with advice and some know more than others. This is a frustrating condition and I can only tell you my experience and choices which is different than others.

when ella was diagnosed, the toughest part was trying to decide the right treatment. Should I do surgery, what is her prognosis, am I doing the right thing? I wished I had a wand that could tell me what to do and it was very hard for me personally. I'm sure many others will agree. I had to make several adjustments over time and prayed things would help. no one could see what I could, the pain in her eyes, how one day was different, how she would be happy and run but the next day not wanting to walk. They only knew what I told them including her neurologist. So I am extremely sorry.


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Ask your neurologist about his/her opinion directly. Make a list (or send an email) so that you can't get caught up forget something important.

So a list might look like:
Is surgery recommended?
What are the surgery options: shunt, decrompressiom, etc. ?
What is the prognosis for life expectancy and quality of life without surgery? With surgery?
Might surgery be an option later if/when medication is no longer controlling symptoms?
And so on.
 
I wasn't going to post the pictures to get a second opinion. I am a nursing student whose taken anatomy and physiology, I understand what I am looking at. I just know it's something that would help me to be able to visualize what is going and might have helped someone else. Thank you for the suggestion though I won't post them here.

I know when I found out I googled for the image of other dogs afflicted. It helped me. Oh well.

Pat is extremely knowledgeable and probably would understand what you are talking about. Karlin I hope will chime in since she has several years of knowledge and knows a whole bunch about this from researchers as well as treating her own. I just don't know enough about images and sometimes when a neurologist that is known for being very *pro* surgery talks about the mri instead of the actual dog as the basis of surgery, it makes me uncomfortable.


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Ask your neurologist about his/her opinion directly. Make a list (or send an email) so that you can't get caught up forget something important.

So a list might look like:
Is surgery recommended?
What are the surgery options: shunt, decrompressiom, etc. ?
What is the prognosis for life expectancy and quality of life without surgery? With surgery?
Might surgery be an option later if/when medication is no longer controlling symptoms?
And so on.


I sent her an email today because every time I try to talk to her I start crying like an infant.
 
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.
 
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.

How old was Riley at the time of surgery and how is Riley now? Thanks for sharing, this helps.
 
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