View Full Version : Ella's Results and New Decisions
8th September 2010, 06:02 PM
I first want to thank everyone for their support and have received a lot of helpful information but of course I still need to think about things a little more now that I know some of the details. I of course brought reports from Dr. Rusbridge, Cavalier Health, what people said, and still managed not to ask all the things I meant to!
Here are her details:
In 6 months her syrinx size has grown from .32 (before surgery) to .51. That seems like a big difference in such a short time with surgery and being on (gabapentin, prilosec, and tramadol). One hard thing many people who first need to decide about treatment do not know is progression and how they will react to medication. I guess that question is answered. He was concerned with how fast it is progressing and about how medication is not helping.
I read about one of the studies Dr. Rusbridge did (Karlin and Rod may be familiar with this). The size of the dogs syrinx in the studies were larger than Ella's. I think the mean was .7? I asked him why if hers is less is it so much worse. He told me that they have found it is not necessarily the size of the syrinx but the location. The location of Ella's is at the worst place. It is at the very top.
I asked about alternative therapy. He turned this down even though he does give Ella accupuncture. He did not say in the exact words but I got the impression that this will not be a solution. This is when he talked about surgery.
He mentioned doing another surgery. He said he would go in like the decompression surgery and remove the scar tissue.
I asked him about how I read that if the tissue had attached this could lead to major damage and if the tissue was attached in Ella's case. He said he would not know if it was attached until he did the surgery. If it was they would carefully scrape or pull each piece in order to prevent nerve damage. Of course this causes more risk. I asked him exactly how much risk. I said is it a 50/50 chance? He can not tell me these things but said nothing like that but more risk than her previous surgery. There is a chance of swelling, bruising and hemeraging.
On one forum someone said they heard that once the scar tissue was removed it does not come back. He said he does not know but dogs (people) can produce something that will cause the body to create scar tissue. So that would be why he would put a bone cement to cover up the space.
Question? Does anyone know about this cement? I mentioned the titanium plate but I can not afford this. In fact her first surgery and MRI was denied by insurance which was not what I expected. Ella's neurologist will do the surgery for a low cost because he knows my situation and he does not want my decision to be based on the cost. He said he would work with me, however titanium is out because of the cost. He can wave his surgery fee but the actual cost of the plate is very expensive which he can not help me with.
I read about post-surgery sound wave therapy. He told me that they do this at a hospital in Charlotte. I have seen the responses on the yahoo group with success stories, but I have to consider her progression. Doesn't that seem fast? Also it would be the same cost if not more. The benefit would be less risk.
So this is where I am right now. Do I go with the surgery or do I try the sound wave therapy. Please let me know if you think her progression seems fast? I know no one can tell me what to do but I know I have to do something. I don't know if I should start the sound wave therapy and see the results, but then that would be another MRI and cost money and does she even have the time to risk it if it does not help?
I could do the surgery and then do some rehabilitation treatment.
All I know is at least I know more than what most people do when they first discover their dog has SM. It might not be what I want to hear but I am going to do everything for her. That is my other concern. This is for her and I need to factor in that surgery will require additional recovery etc. :sl*p:
I am just glad I have this information
Love my Cavaliers
8th September 2010, 07:39 PM
Oh Anne. What a nightmare scenario. What a shame that nothing is clearcut for you and Ella. The soundwave sounds interesting, but does it help once the scar tissue has formed? My daughter has scleroderma. Part of the disease is excess collagen production causes scar tissue to form on her skin. She had experimental lightwave therapy treatment which actually did loosen up some of the adhesions in the scar tissue. Don't know if it is the same mechanism at work in the soundwave therapy or not.
I don't know if this helps at all, but if it were my dog, I would probably do the surgery again if your neurologist feels fairly certain that the cement will cut down on the possibility of the scar tissue reforming. Unfortunately, I have never heard about the cement either and I know I would be worried about the reformation of scar tissue. I am assuming that is the purpose of the cement - to cut down on that possibility? I know the thought of putting Ella through the surgery again cannot be pleasant - the recovery is such a long, difficult time.
Lots to think about. I wish I had a magic wand that would wipe SM off of this earth for both dogs and humans or that the right answer for you would just appear out of the air. Whatever you choose to do wil be with Ella's best interests at heart. Always keep that in mind and you will know that you are doing the right thing.
9th September 2010, 02:09 AM
I am sorry you are in the middle of this nightmare.
Ella is a very sick little dog
If the condition is getting worse and medication is not controlling Ella's pain you must do something.
Nobody on a forum can give you such informed advice as the Neurologist that is treating Ella, but even he will not be able to guarantee that anything he does will enable Ella to live without pain.
You may put Ella through this surgery and it will succeed enough to give her a reasonable quality of life. Nobody can know whether that will be for a short time or for quite some years.
Ella may have the surgery and it will not be successful. You would have put her through another operation & you still may find yourself in the position of having to consider the unthinkable.
I know this is so hard for you, but owners of SM dogs like us have to make the best decision they can, without knowing if they are choosing the right option, and then be prepared to live with the consequences.
Only you can decide, you are the one that knows her best.
We will respect you and support you whatever you decide, because the one thing that shines through your posts is the fact that you love Ella & that you will always put her wellbeing first.
9th September 2010, 04:21 AM
I am so sorry to read this Anne, thinking of you and Ella in this very difficult time. Whatever option you decide to go with at least you will be there for Ella and she knows you love her. She is very lucky to have such a caring owner :hug:
9th September 2010, 04:13 PM
Hello Anne. I'm gonna skip the part where I tell you how sorry I feel, because I know you know that. I've been thinking of you guys all of tuesday. :o
So let's get straight to my 2 cents;
I dont know much about the soundwave therapy... However, on this forum i remember reading a thread about a woman who ordered an ultrawave (or something?) machine and it seemed to help in scar tissue forming after the surgery.
If you opt for second surgery, I would definitely look into that.
As for your decision;
if it was Blondie; I think I would do the second surgery.
However, it would depend on how severe her symptoms were...
If Ella is in pain, progressing and med's are not helping (I assume you have tried most of the med combo's out there) you dont really have a choice...
I think it's the best shot at a long life for Ella. She is still young! If Ella were 8 or so I think , if it were my dog, I'd be more hesitant to do the surgery...
If it's progressing that fast then also experimenting with more meds may cost too much time also..
I think that we should also try no to overdramatize the surgery. Dr.West has said to me that dogs do better with DS then people. And in people several SM surgeries are very common. If I read about the surgery in people, a few weeks back I went ons several SM boards where people talked about there experience post-op, I didn't have the impression most of them where in terrible suffering post-op. As a matter of fact , i felt they were relieved and felt instant improvement in symptoms , especially the headaches....
With dogs, it's more complicated, because WE worry, we can't read their pain and signs... Also, we cant make them understand certain things are not good for them, such as activity, and they can't reassure us about anything....
Anyways, I know you will do whatever is best for Ella, weither it means you try a different route first, or opt for surgery. In the end, you're the only one who knows how tough she really has it right now, and how fast things are going....
Maybe you feel she has more time... Maybe you do wanna try other med's..
I don't know. It is wonderful you have such a great surgeon. I am sure he has Ella's best interest in mind at all times and would not recommend surgery if he didnt think it was her best shot. Hugs from me and monster and let me know what you decide....
9th September 2010, 04:23 PM
Also, may I add it makes sense to me that when you remove scar tissue less scar tissue will come back... I mean, think about it;
you have a wound, the wound heals, scar tissue forms...
Sometimes we have the scar removed for cosmetic reasons. But the scar tissue doesn't form back the same unless the wound is opened again... The same trauma done to the tissue..
This is just my own logic talking and ofcourse I have no prove for this...
I also dont really know what Im talking about, but I am letting you into my reasoning, the way I would think if it was my doggie, coz it may be helpful somehow, raise a questions or something..
All little bits help, no??
Why did the scar tissue form in the first place? I assume it's because of the incision in the dura and the trauma that that causes? Knowing about the formation off scar tissue and the way it's removed could possibly soothe my mind a little bit..
9th September 2010, 04:55 PM
Thank you all for you comments. I actually called Ella's neurologist last night and his partner's Cavalier that he talked to me about going through the same thing as Ella, had surgery yesterday. I actually called to talk to him about it more and the risks and he told me the Cavalier did not make it through the surgery :cry*ing:This dog just had the first surgery 2 months prior and he told me that the complications were not related to the scar tissue. He said it was hard to explain but maybe she had a stroke. I know anytime you have a surgery like this, there is that risk.
Since Ella is still able to have very good days. We had so much fun on Sunday in the water! I have got to post the video's :cool::-p I am not going to put her through that until it is absolutely necessary. It will be because she is progressing but he told me to wait until I felt her quality of life was at that point. I am going to keep a journal which I would recommend for anyone with SM. I actually might start a new thread. It is like a dog with arthritus. She may have a day of energy and have that spark in her, but it makes her feel bad after. Well I think it is important for her to have some of that joy. I know her and I know when I am doing too much and to make her come in.
I tell you that Sunday made up for everything I have gone through these past several months! I will also say that I think water is a good therapy for them. I am going to see if maybe :xfngr: her neurologist can talk to Dr. Dewey or someone because this would be his first time doing a second surgery so that scares me. If anyone knows a neurologist that has more statistical information than what I got with comparing Ella to the only other dog having this done that did not make it, then I would be interested.
I don't know if anyone knows this information from Dr. Rusbridge, but anything is better than 100 % mortality.
9th September 2010, 05:25 PM
Anne, thinking of you and Ella at this very difficult time in her SM journey. I guess it is something that so many of us with our SM dogs will come up against at some point in the future.
The decision as to whether or not to put her through a second surgery must be so heart wrenching for you. I can only re-iterate what others have said that we are all here for you.:hug:
9th September 2010, 05:29 PM
I'd agree with Margaret's post.
I do think it takes careful honesty to determine and weigh how much pain a dog is allowed to have in order to also have some good days. Such honesty is not always easy. If I were holding off on or deciding against surgery, I'd really want effective medications; steroids if needed. I'd feel the good days would need to far outweigh pain sessions. There are stronger meds for pain available such as Lyrica and steroids. Maybe those should be a consideration? :flwr:
I think it is pretty fast progression if the syrinx has doubled in size in just 6 months post surgery -- you would expect the opposite in the first year at least and especially in the first couple of months.
This is what Dr Marino said about recurrence for the regular descompression when in London in 2006:
• FMD is 81.25% effective right now
• Re-operation is needed in 25% of canine patients and seems to be due to scar tissue
• In such cases, dogs usually are fine 3-6 months then start to show signs of recurrence
So I would think scar tissue can regrow -- it does in humans. The body can produce scar tissue at any site -- removing it will not prevent it reforming.
I don't know whether recurrence is at anything like the level of the first time around. There are not many studies on any of this -- really most of these are very tiny surveys. Even Dr Marino's own stats for the mesh surgery is only on a few dozen dogs. I know at least two dogs that have had scar tissue form with the mesh, and some have had other complications. I am not sure whether these are included in the study samples or whether the owners necessarily return to inform the surgeons of later problems.
This is really a grey area and is one reason -- to be contrarian -- that I mistrust some of the reports on the success (or not) of various treatment approaches. I frankly just do not believe some of the claims on behalf of the mesh surgery for example, though I fully respect the people who do it and their commitment to the dogs, because some of the claims don't match what I see people saying whose dogs have had the surgery, almost all of which are back on gabapentin etc and some of which had difficult recoveries or scar tissue. I just find it hard to believe that only the supposed rare exceptions are posting on the subject of this surgery. Some of the dogs involved have never been re-MRId as they are halfway across the US. I am willing to be convinced but I have seen the claims changeover time, or vary depending on who dog owners have spoken to on the surgical teams, and I find the variety or responses a bit confusing. I'd like to see some very large peer reviewed study samples, over several years, and the hard evidence (the scan results etc) for the various surgeries and for medication treatment.
It does also worry me that some post surgery dogs do not get the meds they need because owners or the medical people whether neurologists or vets feel the dogs are not 'supposed' to need them and an owner can be made to feel like the dog failed the surgery if placed back on meds and psychologically this may act as hidden pressure to keep the dog off meds. I see posts sometimes from people announcing their dog no longer needs meds post surgery because 'the dog only just scratches when excited or walked on a collar'... well, this is one of the things many neurologists put dogs on meds for in the first place as scratching like this is believed to be a sign of at least considerable discomfort and in some cases, serious pain/headache.
In your position I do not know what I would do. It is a heartbreaking situation. I do not even know what I'd do if Leo was having more pain than could be managed on moderate levels of meds -- maybe I'd opt for surgery, maybe not at his age (7) with a heart murmur.
9th September 2010, 05:41 PM
Thanks for that information on scar tissue Karlin. I did not know about the recurrence rate after second surgery. That is def not a good prognosis.
As for Ella,
I'm glad to hear Ella she is having her good days... I am with you on that.
It's the reason why i didn't do surgery myself yet, because since Blondie's quality of life is still really good (and managed on just omeprazole), I don't feel I can morally and mentally justify the surgery, weither there's a 95 percent syrinx or not.
(On another not I finally got an email back from Clare :))) who said she would do an email consult which she prefers over phone consult and she also said that generally she would advise against surgery until there is not much quality off life left)
Reading your posts before I really thought Ella was in too much pain to do much, but since Ella is still doing good and having fun. enjoy those days!!
You can then make a decision when you feel like that's not the case anymore...
9th September 2010, 05:54 PM
Having worked with Clare with Leo and talked to her many times, I'd modify that statement just a bit :flwr: -- she generally recommends surgery, all else being equal, when medications no longer keep the dog comfortable and the pain affects the dog's quality of life. But there are things that would alter that advice and one would be a particularly bad scan which might indicate the dog might have a serious collapse or have little time left in which to do surgery without it permanently damaging the dog's quality of life. There are a lot of complexities and considerations, generally. Each dog has to be considered on the basis of its own scan and symptoms and prognosis. :thmbsup:
9th September 2010, 06:20 PM
There are a lot of complexities and considerations, generally. Each dog has to be considered on the basis of its own scan and symptoms and prognosis. :thmbsup:
I hear you on each dog being different Karlin! Ella actually began prednisone for an as needed basis a month or so ago but she is now taking it regularly. He also has added amantadine.
You know I can say she is really bad and others see differently. I just know things about her and I have carefully watched her progression. Karlin, I understand about monitoring her pain and I do that. She had surgery in February and it wasn't until almost June that I let her have a little fun. You know some people said I was too protective of her and one reason was for fear of scar tissue. Ironic. I feel I am a really good judge at what she can and can not do. I saw her in high spirits and I jumped on it. Now most of the time she was just standing in the water so I would say that it wasn't that much activity, but she was real excited.
The strange thing about Ella is that she does not scratch icon_nwunsure
Karlin, I don't know if you saw all the positive responses on the yahoo group about the Alphasonic treatments. I think that Ella might be different but it sounded promising.
9th September 2010, 06:36 PM
That's pretty much what I had meant and understood by Claire's email, karlin. I probably didn't accurately wrote it down though:cffee:
Anyways, I have already gotten my second opinion from Dr. West, who pretty much thinks along the same lines as Clare, in terms of medical management vs. surgery.
He even brought Clare up during the consult.
However, if things would change I'd most likely fo to Clare for a second opinion. I had meant to, but it took her more than a month to reply to my email.
I understand she is busy...
What do you mean by "a serious collapse"? I had discussed a possibilty of "collapse" with Dr. West , since that was a concern of mine, and he said that symptoms and pain would not appear overnight. He said I would absolutely notice when she would start to go downhill, and it would be gradually, though can progress fast. In that case surgery could be recommended.
So far, she has managed remarkably well. No symptoms have recurred and i haven't seen any changes. If anything, since she's been on omeprazole, it's been for the good. Im praying every day it stays that way! If there were an obvious change for the worse I wouldn't hesitate doing the surgery.
But I hope you all understand it' can be hard to justify going into the brain of your dog, when she is completely asymptomatic, and clear on a cincial neuro exam,
even though the scan is dramatic.
I do plan to have her scanned again in 4 months. (so 6 months after first MRI) Dr. Marino ha mentioned a complimentary MRI scan for dogs currently diagnosed at LIVS with PSOM. He is doing a write-up on it . I would like to take advantage of that opportunity to compare "apples to apples" . Hopefully, he'll leave me some "wiggleroom" since I'd like to squeeze in a spay at the same time, :p but the timing is unfortunate since the spaying time should be end of february and that is about a month and a half past the 6 month free scan period. I just dont like all this anesthesia stuff...
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