ACM1 and questions

[asdkjneuv]

I first started getting MRIs when I was eight -- I had severe migraines and the neurologist at the time was concerned about a brain tumor (but it was found out later it was related to puberty). When I was 15 (almost four years ago) I had an MRI to check for signs of aneurysm or stroke because I was sick (and I relate that period in my life to Paxil withdrawal) and my ACM was discovered. I have ACM1 at 6mm and I just had a follow-up with my neurologist last week with a new MRI. I've never been in any accidents or had any head trauma or anything, and I can't find literature to explain whether or not ACM can be non-congenital. I've talked with my neuro about it but she's not well-versed in it as far as what causes it. No one else in my family suffers from it, and I don't have many symptoms aside from morning headaches every once in a while. Does anyone know where I could find information on why ACM would just suddenly happen without prior cause? Thanks a ton!

-Sam

[LIZARD]

Hey, Sam. :)

I'm sorry you're not doing well. :( I can imagine it must be frustrating to leave the doc's office with no answers. This means you should for another one, and there are sites that can help. Check out the following sites for referrals and more info:

www.ASAP.org
www.WACMA.com
www.conquerchiari.org
www.chiarione.org


Good luck, my friend. There is help and hope! :)


LIZARD :)

[Mayzoo]

It is rare for chiari not to be congential; however, it can be trauma related--


"A residual syrinx was seen in the cervical spine of two patients, representing the two "poor" outcomes. In one case (an adult patient) a demyelinating disease as well as a Chiari I malformation with syringomyelia were diagnosed. Although the patient's headaches and CSF profile improved postoperatively, the small cervical syrinx had not changed in size and was associated with severe, dysesthetic pain. The other patient, a girl, remained neurologically stable but had a holocord syrinx, which did not changed in size. This patient had the most severe arachnoid adhesions in the series. The initial microsurgical attempt at establishing CSF flow from the floor of the fourth ventricle was not successful. A large aberrant PICA embedded in thick arachnoid adhesion lay over both cerebellar tonsils. Her postoperative cine MR study demonstrated a CSF profile in which there was obstruction to dorsal CSF flow despite the posterior fossa craniectomy, indicating that her scar was a significant physiological issue. This child's parents described and documented a history of severe birth-related trauma with a neonatal subdural and intraventricular hemorrhage. There were no cases in which neurological worsening occurred." Medscape

"We present data that support the primary finding in Chiari I to be a pathological and thus physiological block to caudal and cranial CSF flow in the CCJ during systole and diastole, respectively. Whereas tonsillar position provides a general screening parameter, the CSF profile dynamics in conjunction with the clinical examination findings provide an equally useful parameter in the diagnosis of Chiari I malformation. Successful treatment requires reestablishing CSF pathways by a surgical procedure appropriate for the presumed origin and nature of the obstruction. It is reasonable, based on our data, to hypothesize that selective vulnerability of the spinal cord to the following factors also play a significant role in the differential development and propagation of syringomyelia: 1) pulsatile CSF pressure, 2) trauma and scarring, and 3) anatomical distortion.

In patients in whom surgery has successfully resolved symptoms of Chiari malformation CSF profiles will parallel those obtained in normal volunteer. In patients in whom previous surgery failed abnormal CSF profiles will be demonstrated " Medcape

I have more links...but it is late here. If you would like I will post them later.

These are the only two "ways" one can end up with a ACM! diagnosis.

[pab]

may be related to reaching maturity? maybe it was always there and no one "noticed" it before? and maybe there are other persons in the family with it, just not had sx and therefore no MRI to dx? good luck