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kimy27
16th November 2009, 09:11 PM
We took Bailey to Glasgow vet school today and unfortunately the neurologist agrees that it is fairly likely Bailey has SM :(

We have to take her tomorrow morning to get her MRI. We have to drop her off at 8.45 and then pick her up later in the day.

To be honest I was hoping the neurologist would tell me I was being paranoid but after listening to the symptoms and giving her a look over (she found her neck to be tender) she said the likelyhood is that she does have SM.

However it hasn't been confirmed yet and I'm hoping and praying the scan will be clear :xfngr: My family aren't being too supportive at the moment and think I'm putting Bailey through unnecessary trauma. On the one hand I hope they are right and that she doesn't have SM but I am really just trying to do what is best for her... they think I read up on things on the internet too much :neutral:.
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momtobug
16th November 2009, 09:37 PM
I just wanted to say that i am thinking of you and Bailey and hoping your fears are not confirmed tomorrow.

Hang in there

Jo

RubyMae 12 weeks

meljoy
16th November 2009, 10:58 PM
Hi,

Leo showed various signs earlier this year and when we saw the neurologist he said he thought Leo has SM. He was MRI'd and to everyones surprise had no syrinx:jmp2:

He does have the Chiari malformation and who knows what the future holds but just be reassured that sometimes we dont get the results we were dreading.

I'll be thinking of you and have everything crossed:xfngr::xfngr::xfngr:

`Mel

Tania
16th November 2009, 11:17 PM
I had a similar situation with my family in particular my mother and also some of my friends. The trouble is severe sm symptoms sounds too horrific for most people to comprehend as they will only think and see headlines . People don't understand that a number of sm cases can be treated and the dog can be given quality of life. You have obviously read about this and you are doing the right thing. Just take one step and one day at a time. You will fing plenty of support and understanding here. Bailey is very lucky to have you. A big kiss to Bailey and we will be keeping our fingers crossed.

Nicki
16th November 2009, 11:19 PM
Tania is right - and sadly often families don't understnad the depth of feeling we have for our beloved companions. We can only do what we feel is right...

It is better to know what you are dealing with, and then you can make the best of every day, reassured taht you are doing your best.

Will be thinking of you tomorrow

Karlin
16th November 2009, 11:28 PM
Yes just hang in there and see what comes up on the MRI -- it is hard not to worry but try to wait and see what comes back first.

It is important to understand though that the malformation IS a diagnosis of a related problem, if it is connected to similar symptoms as SM (while a syrinx is not what any of us want to see, unfortunately, neither is the malformation but it is very widespread and does on its own, cause problems for some dogs). In humans, Chiari Malformation is actually a greater cause of SM-like symptoms than SM. Most people with either condition speak of having Chiari (because those with SM tend to have Chiari first, as with cavaliers). So for any dog showing symptoms with the malformation, I'd definitely not leave it untreated and the medication protocol is very similar to what you'd do for SM, as is noted on Clare Rusbridge's website. Fortunately the malformation alone in cavaliers doesn't seem to cause pain with the frequency it does in humans.

http://www.veterinary-neurologist.co.uk/part2.htm#21

Generally the treatment approach is something like frusemide and if that doesn't help, adding other painkillers.

PSOM can also cause some similar symptoms too.

Best of luck on the MRI and let us know the results when you hear. :flwr:

kimy27
17th November 2009, 12:07 AM
Thanks everyone for your support. I will let you know how it goes tomorrow!

Margaret C
17th November 2009, 12:17 AM
I'll be thinking of you tomorrow

kimy27
17th November 2009, 02:40 PM
I just got a call from the neurologist and it has been confirmed that Bailey has SM :(

From what she told me on the phone it is moderate and she has syrinx on her spine. I am really upset at the moment but I am trying to keep calm until I go back to pick Bailey up and until I am able to get the full story from the neurologist.

I was hoping that if she did have it it would be a mild form as her symptoms are not too bad but to hear it is already moderate has really given me a shock! :(

The neurologist wants to discuss medication. The options are either not to medicate at the moment as her symptoms are not that bad or to try the medication and see if it helps.

What do you think?

Tania
17th November 2009, 03:09 PM
I am really sorry about your news. When I was first given the news about Molly (who has a syrinx and considered severe) I felt as though I had been kicked in the face and it was the end of the world, I couldn't stop crying. She is now on medication and doing really well . Try and stay positive you will get a lot of support and information from here and we will all help you get through this.

Kiddo
17th November 2009, 03:13 PM
Oh I'm so sorry.

I personally think I would start the medication now. If it does progress, you don't want your sweetie in any discomfort. Plus, if you can slow it down, or at least control it I should say, then who knows, maybe the progression won't be fast or very severe.

I'm certainly thinking about you today. Try to stay positive, there's a lot you can do to keep her comfortable.

~Dawn

ppotterfield
17th November 2009, 03:14 PM
I just got a call from the neurologist and it has been confirmed that Bailey has SM :( . . . . The neurologist wants to discuss medication. The options are either not to medicate at the moment as her symptoms are not that bad or to try the medication and see if it helps.

Lots of hugs to Bailey and to you. While it is such a sad phrase to hear, "your dog has SM", for me having some answers was something of a relief. At least you know what you are dealing with to some extent, although SM can be such a "vague" disease that it is frustrating to work out a treatment protocol. My recommendation is to first have a frank and detailed conversation with the neurologist. Make sure you described as accurately as you can Bailey's symptoms and their frequency and then make the decision together. If the neurologist is not that experienced with SM you may want to get a consultation with someone who is or ask your neurologist to review her case with others who know the disease better.

Best of luck to Bailey and to you and keep us posted.

Cathy T
17th November 2009, 04:52 PM
Couldn't have said it better Phyllis. While it is distressing to get this diagnosis...at least you know what is going on. At the same time, it's so frustrating that the disease is still so vague. Would be so much nicer if it were black and white....but it isn't. A frank discussion with your neurologist along with your personal insight should help.

kimy27
17th November 2009, 07:57 PM
We are back from Glasgow vet school and poor Bailey is curled up on the couch sleeping. I just want to cry everytime I look at her :(.

I got to speak to the neurologist and it was a lot of information to take in. Luckily she wrote it all down for me...

Investigations- The brain shows a marked dialation of the ventricular system (hydrocephalus). The spinal chord shows in different degree but throughout dilalation of the central canal plus syringomyelia. Syringomyelia is most marked at the level of T1, in the mid thoratic region and mild syringomyelia in the mid lumbar region.

Diagnosis- The clinical signs and diagnostic tests are consistent with Chiari-like malformation/ syringomyelia affecting the brain and spinal chord.

The neurologist has said my options are either medication or surgery. I am really not sure what I am going to decide at the moment.

Any advice/experience would be greatly appreciated. :flwr:

Wagtails
17th November 2009, 10:48 PM
Oh dear, poor you and poor Bailey - I'm sure everyone on here will be wishing her well and sending healing thoughts.

There has been a lot of discussion of surgery versus medication on this Board already and only you can really decide that once you have taken it all in and spoken to the specialists again.

For what it's worth, my own ruby (Megan) who was 9 years old when we discovered her SM and with quite bad hydrocephalus and very worrying neurological symptoms, has nevertheless been hugely improved by her medication. We felt she was far too old to even think about surgery and it wasn't actually offered, but Meg is a good example of how dire things can seem at first, and then how much better they can get after a while, once you have got used to the shock and the dog has got used to the pills!

So "nil desperandum" and lots of luck. Do let us know how Bailey gets on. Every good wish, Marie-Anne

Love my Cavaliers
17th November 2009, 11:00 PM
I'm so sorry you got your fears confirmed. It is absolutely devastating when you get that diagnosis, but in time, you will learn to live with it. It does get better and you won't always cry every time you think of what poor little Bailey is having to deal with. Given your diagnosis and the fact that they gave you the option of medication vs surgery, I would give medication a try first. When Riley was diagnosed with severe and advanced SM, two different neurologists told me that surgery was the preferred option for her - and indeed, no medication that she was on pre-operatively did any good. She was on Gabapentin and prednisone and neither had any effect on her symptoms. So I went the surgical route with her. She had decompression surgery last June (2008). She is now maintained on daily prednisone and is living a good life. She still has symptoms, but they are markedly reduced.

You'll have days in which you just want to hold Bailey all day long and never leave her alone. You'll wonder how life could be so cruel to inflict such a disorder on your sweet baby girl. And it isn't fair and it doesn't make sense that these little lovebugs can have such a hard time. However, eventually, you will realize that you are not doing her any favors by treating her with kid gloves all the time (unless her condidion warrants it periodically), and you will learn to just love her and not dwell on the what-ifs. She may have a shorter life span than if she didn't have SM, there's just no way to know. Your job now is to get her the best care you can and to love her and give her the best quality life you know how.

If you have any questions about the surgery you can PM me.

momtobug
17th November 2009, 11:06 PM
I am so sorry you got that news today.

I don't have any advice to offer; just wanted to say I am sorry. One day at a time; that adage helps a number of people through a number of issues.
Hugs

Jo
Ruby Mae 12 weeks

Margaret C
18th November 2009, 01:01 AM
I am so sorry.

It is not what any of us wants to hear, but at least you can make sure Bailey has all the care she needs.

I have three SM dogs. Their ages are nine, eleven, and thirteen years old, and they have been maintained for years on painkillers. They enjoy their walks, and their food and climbing the steps on to my bed for a Good Morning snooze with Mum.

I cannot pretend that a diagnosis of SM does not take away some of the careless joy you feel in your pet, and brings an anxiety that always lurks in the back of the mind, but it also brings a special love.

I hope that you can find the right medication for Bailey, and that she continues to delight you as she always has.

Always happy to talk if you want to PM for my phone number.

*Pauline*
18th November 2009, 01:48 AM
I was hoping that if she did have it it would be a mild form as her symptoms are not too bad but to hear it is already moderate has really given me a shock! :(

There isn't always a correlation between the size of syrinx and the symptoms. Dylan had one of the worst scans his neuro had seen, 2 huge syrinx, but he seemed only irritated by something, at that time, not in pain. Sounds like the same with Bailey. How he feels is all that counts. Now you know what the situation is, you can get him medicated. Here for you any time you want to PM me. xx :hug:

kimy27
18th November 2009, 11:37 AM
Thanks everyone for all your advice and well wishes. It's so great to have a place like this. :)

I am still not sure what I am going to do. I will make an appoinment with my vet so I can discuss the options with her. I will also do a lot of reading into the pros and cons of medication v surgery. I will have to wait to see if my insurance is going to pay out before I can decide if I can even afford to have the surgery done. :xfngr:

Bailey is feeling a bit better this morning. She has been feeling a bit sorry for herself and was crying a bit during the night. I think her throat is sore because of the tube. Unfortunately everyone in my house had to work today so Bailey is at her gran and grandads getting well looked after (I didn't want to leave her alone so soon after having anesthetic).

Karen and Ruby
18th November 2009, 11:51 AM
Im so sorry that you have had this news. It truley is devastating to hear those words.
At least you know now and as others have said you WILL get to the point where you can look at Bailey with out crying but right now I know that is all you want to do.
Find something that works for you and Bailey- it took us a good few months of trying before we wound something that worked for Ruby and now she is really comfortable with what she is on.
Surgery is a really really scary word for me and I cant even contemplate doing it to Ruby as Id rather have her comfortable for however long than contemplate her suffering surgery and it not even working and having her die in considerable discomfort and pain. She would not tolerate being still and confined for that long.

Good luck with whatever you choose and we are all here for you when ever you need it!!

kimy27
19th November 2009, 12:25 AM
I am hoping someone can point me in the right direction on what to do next.

Bailey has an appointment at the vet on Friday to discuss her medication but I am thinking this may be a short term solution.

I think I am leaning towards surgery. If she was older then I would probably opt for the medication but the fact that she is not even three yet really worries me.

Is it unrealistic to think she could live a normal life span with only medication when she is only three at the moment? Would surgery have a better chance of halting the progression?

I know no one can really answer these questions but I am really just thinking out loud and would appreciate any feedback.

Would it be possible for me to get a second opinion from a neurologist who has a lot of experience with SM? Has anyone done this?

Karen and Ruby
19th November 2009, 01:08 AM
Hi again.

I agonised this very same decision in May this yr when I found out about Rubys SM.
Medication can be very effective and all a neurologist will tell you (we see Clare Rusbridge) is figures and maybes and only you can decide what is best for Bailey.
Ruby is also young, she will be 3 on Tuesday and too be honest I went through the:

a) Surgery now with a possibility she could deteriorate rapidly and die after which would be a waste of life and if she did make it through she would be crated for weeks with no quality of life (what she is used to) for a long while
b) stick with Meds and hope they are working, with no real way of knowing so but for a re scan next yr to compare, and then in a few years look back and wish I had opted for surgery as the pain is too much and she has to be allowed to sleep forever.

I do have a tear just thinking of so and its the hardest desision Ive had to make and thats with probably the best neurologist on our side helping us through.

My view on things is that Ruby is an extremely active dog, she does Agility, obedience, swimming and loves nothing more tha a run around the reserve looking for squirrels and ducks. To put her through surgery and keep her locked up for weeks seems against her will for me and Im sure if she could talk she would ask "just let me be...as comfortable as i can"
So thats what we do, the best Pain releif there is, and Furusomide which I pray every night is working. Only time will tell but for now she is stronger than ever and i know ive made the right desision xx

Wish you well

Love my Cavaliers
19th November 2009, 04:49 AM
If you are at all contemplating surgery you should absolutely get a second opinion from a qualified neurologist. You can get a copy of Bailey's scan on a CD and then either take it to another doctor or send it to Care Rusbridge. I believe you will have to pay for a consultation either way. When Riley was diagnosed and surgery was the only recommendation by her first neurologist, I took her MRI scan on a CD to another neurologist. His recommendation was exactly the same as the first doctor, and because Riley's SM was complicated by a significantly sized cyst, the second doctor said I should have the surgery performed by the first neurologist since he was more experienced.

Riley had surgery in June of 2008 and I am so happy I did it. Recovery is long - at least 12 weeks until you feel good about doing the surgery because they finally seem more like themselves again - but it's not that hard to get through it. If you go the surgery route, plan to do it at a time when you can spend good quality time home with Bailey so she is not alone. More than a year after surgery, the recovery is just a distant memory now. I have no regrets. I did what I thought was the best treatment in consultation with two doctors, and I would do it again.

Whichever decision you make (surgery or medication), there will probably be times in which you question that decision and wonder why you didn't make the other decision. That is really natural and to be expected - although I do have to say that in Riley's case, I never question my decision now. I did during her recovery, but not anymore. Plus, I have the added benefit that her trial of medication while waiting the six weeks for surgery had no effect on her symptoms. For Riley, surgery was the right decision. I know you will eventually come to peace with your decision, but it may be awhile. Good luck and you can ask me anything abou the surgery or recovery. We are all here for you.

Love my Cavaliers
19th November 2009, 04:57 AM
I hadn't read Karen's response all the way through before I posted my missive - but I think it's great that you get two different viewpoints of treatment options from people who are happy with their decisions. I think the message to take home from this is that you know your dog best and you will decide what you think is best for your dog. What works for one dog may not be the best for another dog - and it also depends upon your own personality and your own situation. There is no right or wrong. There are probably more people on this forum who are managing their dogs with medication that have opted for surgery, but that doesn't mean that surgery is not a good option. Get a second opinion and then trust your heart when you weigh your options once you have treatments options and prognoses laid out for you. It's not easy. We know that.

kimy27
19th November 2009, 04:37 PM
Thank you for both those different viewpoints. If I do consider surgery I will definitely get a second opinion. I would love to get Clare Rusbridge's opinion as she seems to be the most experienced.

As I mentioned Bailey has a appoinment at the vets to discuss medication on Friday. I think this is probably the best place to start and I will just take things from there.

Thanks again :hug:

Karlin
19th November 2009, 05:24 PM
Clare actually does not advise crating for weeks -- indeed, she doesn't advise crating at all once the dog is home :). Neurologists differ quite a bit on this issue. You can read her full advice on surgery on her website as she explains her approach.

http://www.veterinary-neurologist.co.uk/faq.htm

It is also extremely rare for a dog to die right after surgery and few problems have been reported. The problem is medium to long term (as 80% of dogs improve right away after surgery as the pressure is gone) -- for some dogs it is that the symptoms return eventually because scar tissue ends up covering the area again and in worst case scenarios, come close to where the dog started. Most dogs don't have this degree of difficulty though even if they do get scar tissue.

For younger dogs with significant symptoms that signify a more severe case of SM, surgery is probably the only chance the dog may have for a medium to normal length life.

The statistics are worse for medications alone, all else being equal.

Much depends too on the type of syrinx, its shape, how fast the progression is... and so on.

Leo started to have symptoms at about 2.5 though he was diagnosed by MRI on a research scan (I was sure he was my 'clear' dog!). He needed gabapentin by about age 3. He has a large short syrinx that is in the centre of his spine -- lopsided large wide syrinxes tend to cause the most problems. Medication has managed his condition though he has gradually become more symptomatic. I keep his condition under review. In his case, Clare viewed his recent MRIs and thought if he was doing OK on medications that that was a better option for him.

A good neurologist familiar with SM can certainly give you advice on possibilities and advise on the basis of yur current MRI. For some dogs, that MRI may indicate surgery would be better than medication, and vice versa.

You can contact Stone Lion about having Clare give a second opinion on an MRI but it is better to bring your dog for a proper appointment if you are considering surgery, I think.

Most dogs that have surgery actually do really well, really quickly. the neurologists that advise long crating are the ones doing the mesh surgery which is far more involved than a basic decompression s screws are sunk into the skull, etc.

from Clare's website:


How successful is surgery?
Cranial/cervical decompression surgery is successful in reducing pain and improving neurological deficits in approximately 80% of cases and approximately 45% of cases may still have a satisfactory quality of life 2 years postoperatively (Rusbridge 2007). However surgery may not adequately address the factors leading to syringomyelia and the syrinx appears persistent in many cases (Rusbridge 2007). Much of the clinical improvement is probably attributable to improvement in CSF flow through the foramen magnum.

Should my dog have surgery or not?
The cases where surgery is clearly indicated and most likely to be considered successful are dogs that are painful and responding incompletely or not at all to medical management.

How long does it take a dog to recover from surgery for syringomyelia?
At Stone Lion Veterinary Centre postoperative dogs are hospitalised until the dog is comfortable enough for injectable painkillers to be discontinued. After discharge it typically takes 1-4 weeks before the dog returns to normal activity levels.

Will I need to confine my dog after surgery?
At Stone Lion Veterinary Centre postoperative dogs are not crate/cage restricted after discharge. Exercise is limited to short 5-10 minutes walks 2-4 times daily over the first 2 weeks postoperatively and then, depending on the dog’s progress, gradually increased over the next 4 – 8 weeks.

What is the recurrence rate after surgery?
In some cases scaring and fibrous tissue adhesions over the foramen magnum seem to result in re-obstruction and 25% to as many as 50% of cases can eventually deteriorate (Dewey et al 2005, Rusbridge 2007). This can be as early as 2 months postoperatively.

Will my dog need medication after surgery?
Even after successful surgery it is possible that your neurologist may recommend continuing some medication for example cimetidine or omeprazole to reduce cerebrospinal fluid production or painkillers because the damage to the spinal cord has resulted in a neuropathic pain syndrome.