Chiari Malformation and spine issues

[LGH]

Hello everyone,
I'm new to this site and could use some advise. I've been having vague neruological sx's x 6 months. Muscle twitching all over ramdomly even my face. Fluttering sensations down legs and back of arms. And worse of all when try to sleep if I rotate my head to the R, I experience myoclonic jerks (I think that's what it is) when a limb or my whole body with jerk and this can happen until I move my head to a different position.

I had a CT Scan of my head (Negative)
EMG and NCV for upper and lower body (both normal)
Brain MRI only showed Chiari I Malformation without disruption of CSF and no evidence of spinal cord disease from C2 to C5.
X-Rays of C/Spine show retrolisthesis at C5/6 and colapse of foramen.
L/Sp. x-ray good except for decreased disc space at L5/S1 but I don't have any radicular pain and I don't know if I was positioned right on the x-ray table b/c the tech just told me to lay there and I had my legs curled up in a fetal position which a friend said could skew the films.
Having a C/Spine MRI next week.

[Boopers]

Hi LGH,

I wanted to welcome you to the forum. I am sorry you have these health problems and although I can't help you, I just came from the New Visitors forum and there is a person on there named Woe, would was just diagnosed with Chiari.
I am sure that person would be very happy if you contacted them as they were wanting some answers. Maybe you two could help each other.
Wishing you the best of luck,
Linda :)

[Tootsie]

Hi LGH,
There is an entire forum here, listed as Arnold Chiari and therefore under the "A" in the alphabetical index. Scroll down to the bottom of the page where there is a box that says "Forum Jump" and find where it is listed. There is a very active group that will have lots of knowledge and suggestions to share. Cheerio.

PS Keep in mind that there are TWO indexes...one that has general titles like this one, and one that lists specific conditions by their names.

[pab]

yup,, try the arnold chiari forum, but also try the spinal disorders forum...and the flow of CSF is usually determine by a specialised mri 'cine" i think...check that out on the arnold chiari forum.....good luck

[LIZARD]

The Chiari forum is here:

http://brain.hastypastry.net/forums/forumdisplay.php?f=92

Also, has a neurosurgeon looked at your films yet? You should find one who is well-versed in Chiari, as many are not. Some sites that may help:

www.WACMA.com
www.ASAP.org
www.Chiarione.org
www.conquerchiari.org


Good luck!

LIZARD :)

[LGH]

Thanks everyone for your input! I did find the Chiari page on this site, still finding my way around here.
I figured I'd make an appt. with a new Neurologist after the holidays since the one I recently went to just read my MRI report and said not to worry and to come back for re-evaluation in 3 months, without even asking to look at the films first. So I figured if my symptoms persist after new years I may look into going to the Chiari Institue since I only live about 45 min from there on Long Island and let them do a work up to figure out what exactly is causing my symptoms.

Have a good weekend everyone!

[roz1950]

If you have been diax with Chiari you need to see a neurosurgeon , not a neurologist.