CM/SM

[Miryamb]

Hi, I've joined this forum to try and understand the issues and different types of pain people suffer with CM and SM . The thing is my little 2 year old chihuahua has CM and severe SM. she suffers a lot of pain and I really wanted to see what she may be experiencing by reading what you all have to live with. I hope you don't mind me being on here. CM/SM is really affecting huge numbers of dogs across the world. But they cannot tell us what they are feeling. Some show no signs at all. Many such as my little dog Mia suffer terribly. We are in the UK and over here surgery is a real last issue. Where as USA seems to perform surgery in most cases. But from what I've researched surgery seems to have a poor outcome. I just want to know when she is in pain what she may be feeling. Any help would be gratefully received. I love her so much and seeing what she has been through has been very traumatic. Her treatment plan at the moment is Pregablin (lyrica) 3 times a day with cimetidine 3 times a day. Canine sufferers tend to have serious bouts of scratching, the vets assume because of the sensations they feel around their neck, shoulder regions. If her scratching is bad then I give her tramadol on top of her other meds. What meds do you take. Does it hurt to be touched when symptoms are bad or all the time?  What can I do to help her when her pain is bad?  Is there anything that eases your pains or helps. What should I do to make her comfortable. I hope at least one of you loves animals and will reply to me and try and advise. I would really appreciate it.

[selmaS]

  Well it was my research when I was first DX'd that I found about the caviler...but I also came across many about horses too.....and that was all b4 I found nething about people with these conditions.

How are u doing?....

[HeyTinkerbell]

I am so not surprised that you already knew about the Cavalier King Charles Spaniels often having CM.  I am so grateful for all you do to further the CM cause.  

However, I just read on Wikipedia that it's estimated that over 90% have CM.  Then I visited http://www.cavalierhealth.org/syringomyelia.htm#IN_DEPTH: and was amazed at the number of recent, 2013 case studies that are being done, not only on the genetics but also on various decompression surgery techniques.  

While it's very sad that the dogs suffer from CM and syrinxs as we do, it has to give us a more hopeful outlook that the research being done on the dogs will only improve the decompression surgery techniques being used on humans.

Again, thanks for all you do, and I really look forward to checking in on your posts periodically.

[selmaS]

  Yes, it was the decompression surgery for Chiari. Shunts can get blocked,or malfunction....and many can reject the shunt...and I know with a syrinx, many times a shunt will not work as the syrinx is too small.

I also have what is called cerviocranial instability and was told I may need a fusion, but I am avoiding things that will make that necessary sooner then later..

Yes, Topamax is to help change the headaches...

[Miryamb]

Thanks Selma, wow you really have had a bad time. I feel for you very much. I know what it's like to live in pain as I have severe neck problems that is progressing. It's been 8 years. But it's nothing compared to what you have been through. What surgery did you have Selma. Was it decompression surgery? It seems to work well in people. Unfortunately this is not an option for my little chihuahua as she also has Atlanto axias malformation and so her neck is too unstable. The only option she may have is a shunt. But her size is making her neurologist concerned incase it drains too much of her CSF. So she is only on pain meds and as this disease progresses she will just get worse. It's so upsetting. I read about your topamax I've not heard of that one. I guess you use it for bad headaches. Selma thank you for your help I really do appreciate it.

[selmaS]

  I did see there was a conference of Chiari Drs and researchers and they did have a vet there as well and discussed how dogs were affected....so I know they are working together....

B4 I had surgery there were no meds that helped with pain, only post op when I have the occasional issues now I do get relief with TOPAMAX.....I do have tethered cord, mild scoliosis and Ehlers-Danlos too.

The one thing Drs tell me time and again is to avoid certain movement with the neck....so raising her food and water dish may be helpful...not sure if u need to lift it that high since this is a smaller dog, but nething that prevents the bending of the neck may help....

[Miryamb]

Hi, yes I did mean surgery in dogs has poor outcome. I do spoil my little dog she is with me all the time and eats the best food possible. I cook all her meals and add all the vitamins that she needs. I try to keep her body healthy and as strong as I can to help her cope better with CM/SM.

[Miryamb]

Thank you for your reply Selma. I did post a reply to you before but don't know if you actually got it. But I'm grateful for any input. I am a member of a couple of forums for dogs with CM/SM and a research site for dogs with this disease. I mainly wanted to know what drugs helped you. I understand that dogs with this condition suffer the same as humans, and infact the human researchers are working very closely with the canine research team as the condition is affecting both animals and humans the same. Anything else you can think of that you think may assist me in helping my little dog, please do let me know. It would be much appreciated.
Miryam

[Viva001]

Hi, like Selma I read about King Charles spaniels in my search for CM info.  Are you saying that surgery on *dogs* has a poor outcome?  
If so, I think you have to accept that you have a handicapped dog--but the good news is that you get to spoil her as much as you want!

[selmaS]

  Hi and welcome to the Chiari forum.

I am a huge lover of animals....and when I researched Chiari when I got my DX, I read many article's on the King Charles Caviler a small dog that is more likely to have this condition....the smaller the dog, the larger the possibility is....I also read that horses can also have this condition.

  As for how ur Dog is feeling, I am not sure if we can relate it to how a dog may feel....

And  in regards to surgery, u will find many posts with negative thoughts regarding surgery only bcuz I feel u will hear more of the ill resulting outcomes then  the good, we have plenty of good results here....I had surgery 4 yrs ago this May...and I had success with it.

I do have related conditions that cause symptoms, but I was very pleased with my NS and the outcome .

Do u know where the syrinx is located? For me, a heating pad or a soak in a warm tub helped me, also to avoid loud noise...bright lights...

Even bending the neck should be avoided....so mayb lifting the food dish up ...that ,ay ease some of the issues.

I can only suggest u try and ask in the dog forum here on MedHelp, u may find others that have dogs with this same condition.  

http://www.medhelp.org/forums/show/4?camp=msc