[bladensburg,OHrn]

I am hoping to find someone who knows where I may find some information on Arnold Chiari Malformation. I have searched the internet, and it seems that most of the reading is too vague, not very in depth. For example, they talk about surgical correction, but don't mention at what mm of herniation. Very little is discussed about outcomes, care given to pt's, risks, or success rates, etc. I would really like to find a resource for these questions. Can anyone help?

[suebird3]

Have you tried accessing NORD?

Suebird

[bladensburg,OHrn]

NORD?

[suebird3]

National Organization of Rare Disorders. Type it in your search engine, and *voila*!

Good luck!

Suebird

[kids]

The NORD link: http://www.rarediseases.org/search/r...20Malformation The site doesn't have a lot of information but does have links to other resources.

Also the World Arnold Chiari Malformation Assoc has a lot of good information. http://www.wacma.com/

[prmenrs]

http://nyneurosurgery.org/chiari_intro.htm

This refers to it as the Chiari malformation, so you might also try google-ing that phrase. I hope this reference helps you.

[dld]

nfra.net has some info

[former_premie]

Hi. I'm not sure if I can be of any help, but I'll try. Here's some info. I found "In recent years, the term CMI has been used synonymously with tonsillar ectopia or chronic tonsillar herniation in a wide variety of congenital and acquired disorders. The radiological definition of CMI has been reported as tonsillar herniation of at least 3 mm or at least 5 mm below the foramen magnum. However, this definition is limited to a single criterion and makes no reference to clinical symptoms or the presence or absence of associated findings such as syringomyelia."

I got the above from http://www.chiariinstitute.com/research_finding.pdf.

(First paragraph on pg. 20 at the VERY top...)

Sorry...I don't know what else to tell you...I know of a few ACM sites, but they're resources for patients.

I DID find this...: "The treatment for Chiari malformation is neurosurgery. Most surgeries for Chiari report a 70% success rate in helping with symptoms. There are four categories of surgery. There are: 1) decompression of the back of the brain by removing a portion of bone in the skull at the base of the brain (suboccipital) with a craniotomy which is the opening of the skull and upper cervical area. Also, a laminectomy which is the removal of the portion of the bone to gain access to the spinal nerves and opening the tissue covering the base of the brain with the placement of a patch to cover the area where the bone was removed. 2) draining the syrinx which is a cavity of fluid in the spinal cord and opening the spinal cord to drain the area with possible placement of a catheter leading from the syrinx to another space to create a pathway for constant draining. 3) making a pathway for fluid to drain by cutting off the lower tip of the spinal cord. This procedure is called terminal ventriculostomy. 4) suctioning out the fluid from the syrinx. There is a 30% failure rate in all of these procedures. Some doctors like to treat the Chiari malformation at the same time the syrinx (if one exists) is treated. Syrinxes are not always present."

If I find anything else, I'll let you know...again, I apologize. I'm just a neurosurgical patient myself...college transfer [STILL hoping to do nursing (neuroscience: combined neurology/neurosurgery/ENT)]. Sighs...

Oh, and I'm sorry that I'm late in posting/wandering onto here. I 'venture' onto here in 'spurts'. LOL...

Take care

I hope everyone's doing OK!

This site, and you all are FANTASTIC!!:-)

Hugs,

Erin

23y/o; "former premie" @ 30 weeks, 2#2oz., 10 1/4 in. long; hydro due to Grade III IVH(brain bleed), 12 surgeries, last revised 4/20/05, MIGRAINES dx'd 5/13/05;smallest baby in North Carolina to have a shunt inserted, CP dxed @ 2y/o;aunt to David Colby(5y/o) & Jordan Lee born 10/22/02(3#12,16 1/4"@2:27PM EST via C-section @ 36 weeks)--3y/o; Riley "Taylor"(niece---born:4/21/04@3 wks. early weighing 5# and 17.5"); ;-)future ANP(Adult Nurse Practitioner) working on neurology/neurosurgery floor, I hope!!;-);Dad passed away 10/3/03 due to acute renal failure, cardiac arrest, and anoxic brain injury("official" cause of death)

[bladensburg,OHrn]

Thanks for replying "former premie"! Yes, I've checked out quite a few ACM sites on the net, and have gotten quite a bit of information...I guess I just wanted them to be a little more specific. I am an RN - med/surg with quite a few years experience, and have never come across anyone with this personally, although I have heard of one Dr.'s secretary, and a friend of a co-worker, etc.... Personally, I have been dx'd for the past 4 years, and have had an exacerbation of symptoms. I found an online group, much like this forum with ACM pt's. since I posted, but was hoping to hear from some clinical people that could respond to my clinical questions. I am grateful for anyone's input, and resources they find....I will look into them all. I am not so much looking for medical advice (I know that's a no-no on this forum), but more education. I hope my intentions aren't misinterpreted. Thanks again, and wow- sounds like you've had a lot going on yourself! Take care.

[EricEnfermero]

I think the surgery decision has a lot to do with the obstruction of CSF outflow as opposed to a specific depth of herniation.

The nyneurosurgery.org link has some pretty specific information about all types of Chiari malformations. I was startled to learn, for example, that "infants with myelomeningocele and symptomatic Chiari II malformation continue to have significant morbidity and mortality... up to a 50% long-term mortality, regardless of the treatment strategy." I resemble these remarks, except that I'm no longer an infant, so apparently I've really lucked out!

Good luck in your search. With the Chiari I malformations, it sounds like it's a bit of a judgment call on the part of the physician.