Is SM Considered a True SCI?

[stacy]

I've been researching for ways to heal the spinal cord, thinking that these supplements or therapies for SCIs could also possibly 'dissolve' a syrinx. Am I way off base here? Is a syrinx even considered a spinal cord injury? I see journal articles touting supplements like curcumin and L-carnitine as possibly being beneficial for SCI recovery and am wondering if these supps might be useful for syrinxes as well.

[June]

Stacy - I don't think SM is considered a spinal cord "injury" unless there is obvious injury, such as from an auto accident, severe fall, etc., to the body. I've tried to get a hot shot SM specialist in Denver to see me, and he refused because my SM is NOT due to spinal cord injury, as per above. He sees only SM'ers with spinal cord injury from accidents, etc. Too bad, because he is supposed to be one of the best.

I know what you are getting at--the syrinx does cause damage--but I don't think that counts.

[reedy]

Some SM is trauma induced (mine is); sometimes its genetic. I think lots of places consider it an SCI in a broader sense.

I saw John Oro in the Denver area. He was very good and knows a lot about SM, though his speciality is CM with SM as a complicating factor.

[stacy]

Thanks to both of you for clearing this up. June, that's sad about the specialist. I didn't know SM from accident versus congenital made such a difference. I still am not sure to this day what kind of SM I have. The radiologist's report said it was from trauma (I was in a car accident), but the neurosurgeon's report said the SM was not related to the accident. I tend to agree with the radiologist, because I was 100% pain free and enjoying life before the car accident, but the neurosurgeon is supposed to be the one to listen to.

[June]

Stacy--I was talking about Scott Falci at Craig Hospital in Denver. Supposed to be tip top regarding SM due to spinal cord injury, and some other related maladies. If you were in an accident which triggered your SM pain onset, I wonder why your NS says the syrinx is not related? Well, I'm not a doctor, that's for sure!

My NS is Dr. Oro in Denver, and he has done what he can for me--two surgeries so far. But I still have terrific pain. I hope you can find some help, Stacy. Just for the hell of it, you might check with Falci and see if he would do a consult. If you need more info re: Falci, let me know.

[Catrine]

Hi,

Well in my case, it is definitely a true SCI. I'm a quadraplegic due to my syrinx. If the syrinx has damaged the spinal cord then, by definition, it would be an SCI. Of course the degree of injury will vary. I'm being treated by a spinal injuries unit so they believe SM can be bad enough to be considered an SCI.

And as those above have stated, some SM is traumatic while others are caused due to congenital defects (as mine is) - and others are caused by unknown factors. I think the definition some doctors apply is the traumatic vs congenital.

Do I think that supplements will help? Not sure. They might help heal some nerves but the syrinx is still there - unless someone has come up with a remarkible way to dissolve a cyst inside the spinal cord. If so, I'd be first in line to try it.

C