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ilsamom
23rd January 2009, 08:50 AM
As many of you know my Ilsa has SM. She is currently on medications and doing rather well, especially since we added the omeprazole. She still scratches and has a yelp occasionally,usually less the once a week.
As of now she has no neurological damage, yet her deformation was called fairly advanced. She is 4 years old.

I have spoken to Dr Marino in New York. He was very friendly and helpful, (and I know he's one of the best neurosurgeons around), yet I am still reluctant to have the surgery, as I am terrified of the long recovery process and possibly causing Ilsa more pain then she's already in.

I am aware that this is a progressive disease, and that each dog progresses individually, that the surgery is best done before the symptoms are too severe, and that it is an individual decision. I was wondering, however, if anybody has been able to achieve a long lasting comfort for their dog with only medications, if such a thing is common or possible, and if anyone regrets having done the surgery.

She was only diagnosed in November and I'm not sure if I should give the medications more time or get the surgery done this spring.

Could really use some advice, this is such a difficult decision for me.

Thank You

Jen and Ilsa

*Pauline*
23rd January 2009, 10:31 AM
Hello Jen. I can only say how I feel personally so it's not advice as such. I understand your reasons for worrying about surgery. From what I've heard, I don't see a huge improvement after surgery. It's a horrible thing to put a dog through in my personal opinion and not always successful. That's why I decided not to go for it.

I am trying by drugs along to alleviate any pain.

Maybe it would be better to phone the neurologist and tell him how you feel and what he thinks her prospects are with regards to surgery.

Love my Cavaliers
23rd January 2009, 03:23 PM
When Riley was diagnosed last year, I took her to 2 neurologists and they both told me that her best chances of having a longer and better quality of life was to do the surgery. Neither of them felt that she was a candidate for just medical management. With 2 doctors telling me that, I felt I had to go that route. She had decompression surgery in June, 2008. The recovery period is long and hard, but she was such a trouper and pulled through just fine. It definitely takes a good 12 weeks though. For months, I agonized over my decision - wondering whether I had shortened her life and caused her unnecessary pain. Seven months after surgery, I feel that I did what I thought was right for her given the information I was presented with at the time. I don't know if I've prolonged her life. Her quality of life is about the same now as it was before. So, I just love her day by day and am grateful for each day with her. I wish you luck. This is such a tough decision.

chloe92us
23rd January 2009, 06:42 PM
Jen- I can imagine what a difficult decision this would be. Casey will be 6 this summer, and is on meds alone and her symptoms have improved almost entirely. She has not been scanned, however.

I have already told myself I would NOT have the surgery done. I would rather have to end her life early and enjoy every minute of it, than to have her confined to her crate with such a difficult recovery. But that's just my opinion. Don't rush into any decisions until you have thought every possibility through.

Margaret C
24th January 2009, 01:13 AM
Hello Jen,

I had Tommy & Matthew scanned in January 2005.

Tommy yelped very occasionally, I thought he was one of those 'wimps' that cried if you tweaked a hair.
I was sure there was no problem with Matthew, but the scan showed they both had the same size syrinx.

Tommy was 4 years old. He was insured at that time & I could have gone the surgery route. I decided not to partly because of the uncertainty about the results, but mainly because I did not think I could keep him undisturbed or nurse him successfully in a rowdy multi-dog household.

He has had frusemide for many years & he is now on gabapentin & carprodyl. He has become increasingly attention seeking

Matthew was 6 years old. He has frusemide & metacam. He is touch aversive,( he wants to cuddle, then shies away) seeks cold places, & will suddenly drop down with his head stretched between his paws

They enjoy their walks, although they are both are slower than I would expect at 8 and 10 years. They eat well. It is difficult for them to get onto the furniture without help.

I suspect they have a constant level of pain that they have learnt to live with, and this is what I find hard to deal with.

As they have had a reasonable quality of life for four years I think I made the right decision. If Tommy had started deteriorating within months of the scan I would have felt I made the wrong one.

Having a dog you love with SM deprives you of much of the joy you have in your pet. You love them just as much, perhaps more, but in a different, worrying , protective way.

So I am afraid this post is not going to help you. It really is a decision you make for yourself & then you pray hard it is the right one.

Best wishes whatever you decide.

Margaret C

ilsamom
24th January 2009, 07:57 PM
thank you so much for your advice. It is very difficult to decide and you've all given me something to think about. I'm leaning towards surgery as I'd rather halt the progression now while she has a good quality of life then wait until excess pain and damage are permanent. If halting progress is all we can hope for, she's only 4, she has a good life ahead of her. Maybe it's better to suffer for 6 months then 4 years.

Still not exactly sure (and go back and forth) but I thank you and hope your fir kids are well.

Jen and Ilsa

Bernie64
26th January 2009, 07:14 PM
I'm in the same boat. My 2 cavi's were diagnosed in November as well. Currently Ginger is on gabapentin because she seems to be in the most pain. Although Charley's is more severe he doesn't seem to be in pain.

I'm on the fence with the surgery as well and am due back in Feb. to see Dr. Marino. It is a tough decision because there is no guarantee with the surgery. Plus I can't afford 2 surgeries being that I have 2 dogs affected. :neutral:

mjones5
26th January 2009, 08:50 PM
Hi - I am sorry for what you are going through. My Annie, now almost 10 months started showing signs before she was 6 months old and after seeing Dr. Ducote in Dallas her prognosis is not good. Although I have not done an MRI yet there was little doubt in the doctor's mind that she has it based on her current symptoms. She more than likely will go downhill very rapdily as this is almost always the case when that are showing symptoms before a year. I currently plan to manage pain, and when she can't be comforted with meds I will let her go. She is such a happy, lively puppy that crating her for that many months with other dogs running around freely would be cruel. I won't do it. And while there are those that have improved the quality of their dogs' lives after surgery most appear to have not presented signs before the age of one.

I actually know a human with this malformation and her pain is terrible even after surgeries. I can not let Annie live with that kind of pain. But I applaud those that can try the surgery. I think each person must make their own decisions based on their personal situations and the condition of their beloved pets.

I love Annie with everything I have each day and she is attending obedience class which she loves. There are many nights I have cried myself to sleep over this and would do anything to cure her.

You are not alone and the comfort and wisdom found on this board have helped me tremendously.

mjones5
26th January 2009, 08:56 PM
Does the disease cause them to seek more attention? Annie is almost manic about being with me, and having me pay attention to her. I can tell she is beginning to show signs of pain, and now is having trouble getting comfortable at night.

ilsamom
26th January 2009, 10:00 PM
I'm so sorry for all our dogs! It's such a dreadful disease!!!!!! I'd prefer MVD at least I know the medications work. At least they did for my last dog.

I know of a lot of people who have been happy with the results of the surgery, some have been very opinionated about doing it quickly. I hate the idea of restraining her for months, but she's my only dog and has never been crated (I don't believe in crate training) and I wouldn't do it then either. I would watch her carefully and never leave her alone, if I had to go out I'd get a sitter. I'd also buy stairs or a ramp for the sofa and bed.

I know how you feel about Annie, I cry all the time now and have been consumed with this since before her diagnosis. These are such difficult decisions.

I don't know if it makes them more attention seeking, Ilsa has always been like that, I thought it was her or maybe a cavalier thing but you never know.
I'd be interested in other people's experiences. The restlessness while sleeping is a symptom and Ilsa has that as well.

I am so thankful that we are here for each other, and if any of you need to talk contact or pm me anytime!

Praying for a cure!

Jen and Ilsa

ilsamom
26th January 2009, 10:49 PM
I just panicked and called Dr Marino's assistant. I hadn't heard the crating thing. They really are lovely people! She confirmed that they recommend crating, and I replied that was not an option for us. She said that they don't want dogs on furniture even with a ramp, and when I panicked again said that some people put the mattress and lots of pillows and cushions on the floor, and essentially get rid of the furniture i.e. put it away for several months. I guess that's what I'd do, as I don't want to further traumatize her by changing the rules after such an ordeal.

What a terrible choice!
I guess I'm more upset as she just had a short yelping attack.

Take care

Jen and Ilsa

Love my Cavaliers
27th January 2009, 12:20 AM
Hi Jen,
I have a multi dog household, so my situation is a little different from yours. Right after surgery Riley was still so drugged up from the pain medications that all she wanted to do was lie in her crate. I had to use a crate, because Oz was not even a year old when Riley had her surgery and he is just one crazy little guy. So for her, the crate was her sanctuary. She was crate trained as a puppy, but hadn't used one for years. She welcomed it I think because it meant calmness and security for her. I did keep her in the crate whenever I was not physically with her (even when I took a shower) becuase her neurosurgeon did not want her jumping at all, or playing with the other dogs. I seem to recall that someone mentioned that jumping can increase intracranial pressure which would not be a good thing for these dogs. During those first three months post-op, I cried a lot and wondered if she would ever have a normal life again. Right around 12 weeks, she turned a corner. Dr. Marino also says the recovery is 12 weeks.

Jen, if you decide to do the surgery, please PM me. I can send you pictures of Riley pre and post-op. They do look a little like Frankenstien until their fur grows back. I was shocked that they even shaved Riley's ears. I am happy to share my story with you if you think that will help.

Good luck with your decision. Would you go to New York for the surgery?

mjones5
27th January 2009, 04:07 AM
Jen,

While this is a terrible disease we can find a silver lining in everything. Because of her illness I don't let a day go by, no matter how tired or how much I have to do that I don't give her lots of quality time and attention. And I treasure every day with her, and enjoy her so much. And while she is attention seeking I take it as an extreme compliment that something so adorable worships me. And I love having a velcro dog !!!!

No matter what happens I will put her quality of life above everything else, and if Dr. Ducote says the surgery could give her a good and pain free life I would do it. But I have only heard that early onset before a year means very fast and severe progression. Please keep us posted what you decide and how it is going.

Margaret C
27th January 2009, 12:28 PM
Does the disease cause them to seek more attention? Annie is almost manic about being with me, and having me pay attention to her. I can tell she is beginning to show signs of pain, and now is having trouble getting comfortable at night.


I always know when Tommy is uncomfortable because he paws & paws at my legs for attention.

Sometimes it happens & when I look at the time I realise I have missed giving him his gabapentin.

The 4pm pill is a problem, if I don't set the oven timer as a reminder I get engrossed in something and forget the time.

Margaret C

dizzy
31st January 2009, 05:03 PM
Ruby went back to Chestergates yesterday. Last weekend was pretty awful - she kept falling to the side and collapsing on her back leg.

Although off her harness there was a noticible improvement - I have bought a different harness today - it doesn't sit on her sensitive spot!

Saw my vet on Tuesday to see if we needed to add Gaberpentin to the furesimide. He was very upfront with me ( vet of over 30 years) and said he had no knowledge of SM. He didn't even know about air scratching being a poss symptom. :confused: Anyway he said to double her furesimide dose.... to cut a long story short I didn't as I remembered Martin Deutschland saying Ruby was on max furesimide. I came home and made an appt. to see Martin at Chestergates.

We saw him yesterday - he is just so knowledgeable and understanding of both the condition and the owners! SInce her poor weekend Ruby has been fine.... walking miles :dogwlk:with no problem and less scratching than usual. Martin said Mr Skerritt wants to consider Ruby for a shunt - he asked if I would return in 2 weeks to see both Martin and Geoff together. Martin has put Ruby on Omeprazole along with her usual dose of Furesimide.

So that is were we find ourselves. Ruby at the moment relatively comfortable ( has never screamed or yelped just her hyper sesitive side) and wondering what lies ahead... Is a shunt going to help in the long run .... I know it didn't with Carole Fowlers little cav.

Anyway I will take her in 2 weeks - have the consultation and take it from there...
In the meantime Peter Bunny has been seeking attention -:rolleyes: He decided he had to appear to be on deaths door on Tuesday night to gain our attention ( not true he is adored but I think he is jealous of Ruby!) so it was off to emergency vet at 1am - £107 later and he is running round the garden pushing his football all over the place !!! :thmbsup:

Sorry for hi-jacking your post but I suppose I felt I related to your dilema - Is surgery a worthwhile consideration?
Love Dawn
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