Syringomyelia/Chiari Malformation

[kian]

Welcome Rachelle, this thread is full of good information. Deb knows much about this, she is the go to person on this. Your best bet is to read the thread, there is alot of personal experiences in here. Deb will be around to chat with you soon.

[Oliver & Henry's Mum]

Hi Rachelle! I'm sorry I missed you yesterday. Because I know this thread has a lot of reading in it, I will answer your questions as best as I can, and then you can take the time to read the thread, as not everyone has the same experiences.

The only way that a proper diagnosis of SM and/or CM (Syringomyelia/Chiari Malformation) can be diagnosed is with an MRI. Syringomyelia is swelling of fluid in the spinal cord which sends pain mostly to the dog's extremities. CM (Chiari Malformation) has to do with the position of the brain stem in the skull. There is bone and/or cartilage around that area, and in my Oliver's case, the Neurologist felt that, from time to time, depending on how Oliver held his head or moved his neck, part of his brain stem was having pressure put on it.

This is very hard to describe in just one paragraph. Oliver also had many symptoms, but he didn't become really ill until he was nearly 5, which is unusual. Each case is different and each dog responds differently to various treatments. While strides are being made with surgury, often if the dog is ill enough to warrant such an invasive procedure, their outcome will NEVER be 100%.

You'll read about some of those cases in this thread. For those of us who are still active in here, all of our dogs are being maintained through medicine, as well as other treatments. One of our "girls", Georgia receives acupuncture, along with her medication and responds beautifully to that.

Oliver just turned 9 this past December and has been doing brilliantly on his medication! For the first 2 years after his confirmed diagnosis, things were very rocky, but he has settled into a routine, and as long as we avoid triggers, he is living a happy, pain free, wonderful life.

How old is "Ollie"? What symptoms are you seeing? Where do you live, approximately? I'm in London, Ontario and as you'll see in my thread, Oliver was treated at the Ontario Veterinary College, at the University of Guelph. He is now famous there as one of their longest surviving, and thriving patients and is studied by all of the Neurology Students.

I joined the Daily Puppy hoping to find information about this years ago, and it seems that I was the first one to bring it up, so there has been a great deal of contribution to this thread from all sorts of people. There are many useful articles posted throughout, as well as a broad range of experiences.

Welcome to The Daily Puppy. Everyone calls me Deb or Deborah, and I have two Cavaliers. Oliver is my Blenheim, and Henry is my Tri. Henry is symptom free (*touch wood*). We would be delighted to be of assistance to you. Try to wade through the thread though.

[Georgia's Mommy]

Hi Rachelle,

My then 2 year-old Georgia, went for over 6 months before I figured out what was going on. She had been treated for allergies. Unlike most Cavaliers, Georgia wasn't crying out in pain. She was itchy and twitchy and just not a happy dog. She slept a lot. Everyone was sure it was allergies. It did cost a good deal of money to get the MRI. I was lucky that my vet hospital in Philadelphia had a payment plan. My neurologist felt that she could start the treatment before getting the MRI b/c she met so much of the criteria just based on the examination. The MRI confirms it and lets you know the level of severity. Georgia had signs for a long time but the MRI showed she was "mild".

When I researched this breed, I was told that Sm/CM was rare. Don't be too hard on yourself for not picking it up sooner. Even vets aren't quick to diagnosis it b/c it is rare. Georgia was getting allergy medication for months from my regular vet. As Deb said, her dog is going on 9. That is my dream for Georgia. She is 1.5 years (age 3) post diagnosis and I feel like she is doing REALLY WELL. I can't tell you how much it pleases me to be able to say that. It does take a while to get the treatment to make an impact. Deb really helped me keep my cool while we struggled for a few months waiting to see improvement. I also do complimentary treatments which I swear have really helped tremendously in addition to her medication. When I got the diagnosis, I couldn't see the light at the end of the tunnel. Deb & this entire board has helped me so much. Helping me, helped Georgia. This past Christmas my family couldn't believe she was the same dog from the previous year. She is happy and relatively healthy and brings me so much joy.

Good luck to you & Ollie. Deb is a wealth of information and everyone here is wonderful.

Kelly

[jacknyc]

Hi to everyone, welcome Rachelle!

I just wanted to echo what Deb and Kelly have said. This diagnosis is tough to deal with and this whole thread was invaluable when my Jack was first diagnosed. He was MRI'd at around 1 year 5 months with a mild to mod malformation and a "pre-syrinx". He turned 4 this past December and in my opinion is an overall happy dog.

please know we are all here for you.

Deb and Kelly I am happy to here Oliver and Georgia are doing well. It has been freezing here in NY but Jack doesn't seem to mind, it's his mom that wants to hurry inside during our daily walks:)

hugs to all the pups and their owners from Jack and Irene

[Georgia's Mommy]

Irene,

I'm so glad to hear Jack is doing well, too! I do notice with all of this precipitation (I'm near Philadelphia) that I am seeing more head rubbing. Thankfully, she is due for acupuncture on Wednesday which always seems to get her back on track.

I do have a question. I just reordered Georgia's Gabapentin. I used to get a 500 pill bottle (b/c she takes 5-6 a day). Now the company only makes it in bottles of 100. I've called several pharmacies. Hoping this is a small setback and won't be the regular. It will add an extra $15 every 20 days. I'm still going to pay (obviously). I do wish there was more I could have done with her craptastic insurance She was "born" this way so I'm out of luck.

Kelly

[Oliver & Henry's Mum]

Irene, it is so good to hear from you! I always wonder how Jack is doing, but I tend to presume that no news is good news. This winter has been challenging already, but I hope that we all have our dogs titrated well at this point. It does take some time.

Kelly, I heard that several of these drugs are going to be available in generic form very soon. I know that is true of the Lyrica, so it might behoove you to check and see about the Gabapentin as well. We are *this* close to having the generic Lyrica in Canada, which will reduce the cost by nearly half I believe. Between Oliver's Lyrica and his heart medication, he is costing me approximately $300.00 every 5 to 6 weeks. As you said, there is no other alternative.

Thank you as well for your very kind words. I appreciate that tremendously. I've certainly been helped and supported by so many people on here especially in the early days when the prognosis was grim.

Happy Tails everyone!

[Georgia's Mommy]

Sadly, gabapentin is the generic of Neurontin. She takes so much it was a luxury getting it in 500 count for 2 months. I'm going to keep checking pharmacies. Georgie is doing well....so I have to keep things status quo. I'm hit with a bug and I'm so jealous that she is snoring away while I can't find a comfortable way to sleep. Oh, to have her sleep capabilities

[Oliver & Henry's Mum]

Kelly, I didn't realize that about Gabapentin. I thought that was the brand name, as is Lyrica. Hopefully the price will drop, or an alternative of the same medicinal make up will become available for less money.

I'm sorry to hear you have a bug. I hope you feel better soon. We were all under the weather around here shortly after Christmas and the New Year. It wasn't fun.

What a bizarre day we've had weather wise. The temperature has risen all day, and it is currently 58F at 9:00 at night! We had horrific thunder and lightening with massive downpours, as well as dense fog. My Henry is frightened of the thunder, but thankfully he settles if he is in my arms. One more day of this and then the temperatures start to drop and the snow starts again.

Stay safe and warm everyone.

[Georgia's Mommy]

I drove Georgia to acupuncture tonight in the dark on a stormy and windy night. Good thing I had her raincoat in the car. A little photo to make you smile

[Oliver & Henry's Mum]

Awww bless her sweet heart! I needed that smile tonight. One of my "doggy" friends who used to be on here all the time, lost her old Doxie girl today. It's been a very sad day indeed.

Sweet Georgia in her pink rain poncho/coat looks absolutely adorable. Give her extra special hugs and kisses from me this evening please.

[Georgia's Mommy]

Hi All!

Just checking in. I made an appointment for Georgia to see her neurologist in March. I haven't had her there since July. She has been doing okay. I do see a lot of lip smacking and some head rubbing/neck scratching. More than I like but she's in great spirits and very active. She's gone from a dog who never wants to eat to a dog who wants to eat all the time!! She's starting to drive me crazy with it. Eyes still get goopy so I try to keep them clean with warm soaks....that drives her crazy. The vet did say she has poor tear ducts which is why she gets so many eye infections. I was going to get her groomed this weekend (a shave down) but my car had other ideas so her day at the spa has to wait. I'm so looking forward to spring. This cold/damp weather is getting to me. Georgia seems to love it....and I think she is crazy I swear this dog would sit outside in the wind for days without getting tired of it. The funny thing is she runs back in to cuddle as soon as comes inside so I know she is cold....even with her sock monkey sweater

I've begun following Cavalier Health on twitter. Penn Vet is also on Twitter and someone posted that Penn was shocked by a recent study that showed acupuncture helped dogs with cancer a significant amount and gave them 1-2 years longer and pain free life. I tweeted them about SM and acupuncture but haven't heard anything back. I've truly felt like acupuncture has been the key that has helped her. It's just one tool in her tool box but I would like people to know it might help these gorgeous sweet dogs. Georgia might be an anomaly with this but I'd love to help others who might be feeling like I was a year ago.

Ok...off of my soapbox.

I hope everyone is doing well

[Oliver & Henry's Mum]

Kelly, because acupuncture works for Georgia, I think you are right to spread the word. Even if it only ever helps one more dog be pain free and happy, then you have done a great service to the Canine Community. Since I don't do Twitter, perhaps you can keep us up to date on anything new things you may learn from there, as well as their response to you should one be forthcoming.

I am going to be away in March (God willing that the Passport Office cooperates) so I might miss your post. I am hoping to stay in touch either with my laptop or my Mum's. Oliver and Henry are doing very well this winter indeed, which is wonderful, but I know Oliver will have a tough time of it when I'm gone. Fortunately, my sons are staying home and one of them will probably sleep in my bed with both dogs because otherwise, Oliver will be totally lost. I'll buy my new bed when I return.

February 15th was the 9th Anniversary of Oliver's Homecoming. We had a little celebration for him complete with extra "biscotti's" and lots of hugs. Henry enjoyed the party too.

Everyone stay well!

[Georgia's Mommy]

Hi Deb,

Here are some of the articles Cavalier Health Network has tweeted:

Heart:
http://www.akcchf.org/canine-health/you ... oming.html

SM/CM
http://www.cavalierhealth.org/syringomy ... cerebellum

Kelly

[Oliver & Henry's Mum]

Thanks for those posts Kelly. I haven't read them yet, but I will.

I've been a little busy planning my impending vacation. Everything is a "go" with the Passport Office so I've been running around like mad trying to sort everything here before I leave. I'll be in touch when I'm away as I'll have my laptop or use my Mum's. I'll probably read the articles then as I'll have loads more time.

Today, I left Oliver and Henry alone, unattended, in the house for two and a half hours. I think they thought I had just stepped into the Laundry Room initially. Elliot arrived home just before I did, and Oliver was asleep on the floor in the living room underneath the big window, as he had watched me drive away, along with Henry. They did just fine on their own, which was a huge relief, but they were SO happy to see me when I returned. I sure will miss them while I'm gone, but I need this break.

Everyone stay safe and warm.

[Georgia's Mommy]

Have a great trip! Your boys will be just fine. All of them!