Syrinx stats!

[Mazie1209]

Hello! Im trying to find some statistics on syrinxs, and am not havin much luck!  Does anyone know if they are out there? I guess what I'm looking for is..what are the statistics of the syrinx getting worse? What are the statistics for a syrinx staying the same? Stuff like that! I just want to know all the facts, before deciding!
Mazie

[selmaS]

  Yeah, I have no idea that it is out there either...the problem is the chiari specialists do their own research and could be why the stats r so hard to locate...plus they would have them published in medical journals which we may not have access to online.


   Plus, JMHO, stats can not tell u what is going on with u as an individual...even if the stats say the syrinx would not grow...what if urs did, and did so rather fast?.....I think I know y u want the stats, but it really is nothing but #'s.

  "selma"

[Mazie1209]

Yes, that's exactly what they are saying! Just was hoping there were some good statistics out there on syrinxs progressing or not and outcomes! I don't think statistics are out there though!
Mazie

[selmaS]

  Hi...it is very possible for a syrinx to get worse, and just as possible for it to stay the same....and that is the problem u just do not know, just like with the chiari surgery to help shrink a syrinx...sometimes it will, other times it just does not work.

  The main thing is if u have chiari, and a syrinx, u most likely have a CSF obstruction....and that in turn caused ur syrinx to form.

If ur dr is talking surgery, it is most likely going to be for the chiari with the hopes it shrinks the syrinx....and if not, and the syrinx is a certain size they may use either a stent  or a shunt to help reduce the syrinx's size.

I hope this is helpful : )

  "selma"

[Mazie1209]

Cammie, actually yes, I just double checked to make sure on my report. It states
"there is chiari malformation type I, with tonsillar extension beyond the foramen magnum left 10.2mm. There is a syrinx cavity extending from the mid body at c6 to the inferior endplate of t2. Cord expansion is present."
Mazie :o)

[Cammie123]

Did your report actually say 10.2mm? Mine said 1.6mm and I am assuming it is a mistake. Either 1.6 cm or 16 mm. Has anyone else ever gotten  a decimal with mm? Do Doctors really measure portions of mm's?

[Mazie1209]

pam, yep I do have cm, dx'd in '01/02. Depending on which radiologist reads my mri (i have them yearly) the herniation is 9mm or 10.2mm.  In october my nl decided to also mri my neck and discovered a syrinx...the first ns I seen highly rec. surgery on my cm to hopefully reduce the syrinx.  Im getting two more opinions to be sure! I was going to find rough nbrs on how many syrinxs get worse..do they all progress? Or are there many cases of purple living long lives with syrinxs cause they never progressed?
Stacey, I'm not understanding the article I don't think...are they saying it does get worse?
Thanks everyone
Mazie :o)

[Spaceystac]

I have a study I found I posted the link. I is rather graphic and detailed, but informative.


Just so you know, I found this study a bit disturbing, due to the testing on animals. But this type of research must be done in order to get any statistics.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2018707/

I re-read the article briefly, and its is less statistics than it is time limes for the growth of the syrinx.  Here is the conclusion if the study:
  By 450 days after spinal cord injury, all rats developed cysts and glial-lined cavitations of the central spinal cord near the epicenter of injury, which was characterized by extensive dural fibrosis. An ascending dilation of central canal lumen was noted up to 5 mm cranial to the injury epicenter that was not evident to this extent caudal to the injury (Figure ​(Figure1).1). A statistically significant (p < 0.05) difference in central canal perimeter was noted between the distances 3 mm cranial and 3 mm caudal to the lesion epicenter, as well as 5 mm cranial and 5 mm caudal the lesion epicenter, compared to normal, uninjured spinal cords at the same vertebral level.
Further in the article there are more statistical details.
Remember, the this is post-tramatic syrinx that they induced, so the same cannot be said for each individual case.
Gook luck to you and hope this helps you in some way.  Stacey

[pamk5]

I dont really know the answer to your question either.  I dont have a syrinx so I cant tell you much about that either.  Most times the reason you have a syrinx is because you have CSF blockage at the brain stem from Chiari.  You can of course have one due to trauma or idiopathic.  Do you have CM also?  Are you seeing a CM specialist?  If so what are they recommending?  

[STL5]

I haven't really seen any formal stats about syrinxs.  I know that the concern when I talked to  neurosurgeons was what were my symptoms and whether they were progressing.  This determined whether they recommended waiting and having follow up MRI's or having surgery.