Arnold Chiari Malformation

Have you tried accessing NORD?

Suebird

NORD?

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

Good luck!

Suebird :)

nfra.net has some info

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)

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.

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.

Thanks EricEnfermero...I haven't checked that site out yet. Fellow Neuro pt. aye?

You're quite welcome:)! '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 can SOO understand that (and on NUMEROUS levels! LOL...sighs). Whether it be in re: to the hydrocephalus, migraines...I've been fortunate though in that in the 'ZILLIONS' () of pages I've come across/read since I first got the internet ('97)...I've been able to 'enjoy' BOTH aspects of info. 'out there'--from the medical AND pt's 'perspective'. It's been interesting, and nice:). I've NEVER minded the hydrocephalus/shunt(s)--I actually have TWO shunts now...but the migraines I DO mind. LOL!! GRR! :angryfire:banghead:

My life's been interesting, that's for sure...! I like it though...it's provided for some challenges, NUMEROUS opportunities to help people (i.e. signing guestbooks and all of a sudden getting an e-mail from a fellow hydrocephalus 'sufferer' or the parent of one--or even a parent of a premie whose had an IVH, and they want to ask you questions about what your experiences have been like and so forth). That's been one of my GREATEST joys...sighs and . It was ESPECIALLY most 'rewarding' as a 16y/o and...it does one's heart good...ya know?

I know quite a few Chairians---but no one personally. Then again...I don't know any fellow 'hydro' pts EITHER! Well...I mean, I've met parents or grandparents of pts. Ironically, the unit coordinator that was on the end of the unit that I stayed on when I had my shunt revision last year (one of two brain surgeries...), her son is also a former premie, suffered an IVH, is shunted too...when she found out *I* had gone through the EXACT same things as her son--she was JUST as shocked as *I* was to meet someone SOO 'personal' (being that she was on the neurology/neurosurgery/ENT floor). Her son and I have the same NS. We don't have a ped NS anymore...she left about 2 yrs. ago and moved to VA. Her son had been born at the hospital that I had my surgeries at (which coincidentally...I had been TRANSFERRED there, stayed in the old NICU--which was housed in the main hospital, until they built seperate Women's and Children's Hospitals)...and I had NEVER even DEALT with our NS, nor the neurosurgery residents (or neuro attendings/residents, ER...NO ONE! LOL..) until last year...!

I'd managed to go eight weeks AND two days shy of FIFTEEN yrs. before needing last year's shunt revision [my longest time EVER--shortest was 19 days...which was the revision needed to make my temporary shunt placement a 'permanent device'--that was at 5wks. and 2 days old (the initial placement was)].

Wow! So 4 yrs. since your dx...sighs. I'm SO sorry you've had an exascerbation of sx's. That seems to be what happens over time (of course). One either stays where they're at, or they progress/progressively get worse.

I belong to several hydrocephalus support groups--a few are Yahoo, and one is actually a mailing list (which I've been a member of since I was 16).

I understand about the clinical advice (and about the no-no...umm, yeah! :uhoh21: LOL...yeesh!). *I* am ALL for personal enrichment, education...ESPECIALLY when/if one has a medical condition of their own (or MULTIPLE medical conditions). *I* know that ALL too well! Having four chronic health conditions of my own...umm, YEAH! Hydrocephalus/shunt: 23 yrs., sensorineural hearing loss (just right ear--shunted side only: almost 16 years now...), diabetes: dx'd 8/3/04, and migraines: dx'd 5/13/05...so yeah...I know...:)

'I hope my intentions aren't misinterpreted.'--I don't think they will be. I didn't take them to be...:). So far, it seems like everything is 'A-OK'. Don't worry:)! And again, you're quite welcome!

LOL--I haven't had but what the 'average' person with my condition goes through has...LOL. It's OK...I'm just curious to see how many years I'll get out of this shunt...one year down, and HOPEFULLY *at least* four more! LOL...I know I'll get more (HOPING, anyway!!). Since my NS said the average shunt only lasts 5 years...well...*bites nails nervously*. Just kiddin'...LOL.

[Did I REALLY want to know that statistic...? (After ALL?!!??) LOL! Just kiddin'] Something to keep in mind as time goes on...

Hang in there! Good luck with your quest for info.:)!

Take care

Hugs

Erin

P.S. I know of the two best places for ACM decompression/surgeries. I've poured over COUNTLESS CaringBridge sites (not sure if you're familiar with those/have heard of those), and on the main migraine support group I belong to...there's a Mom whose 23y/o daughter was decompressed last year. She goes to one of the two leading ACM experts (Dr. Frim at the University of Chicago). Her daughter was JUST dx'd with high ICP VERY recently, JUST met with a neuro-ophthalmologist to have extensive tests run (she was actually bumped up--appts. typically are about 2 mo. in waiting and hers was booked in a week's time...after reviewing her records), and he said he didn't feel that a shunt would be 100% successful for her daughter. However, her Mom feels that even though the decompression was only 30% successful, if the shunt covers the other part of that success 'rate', then that's promising. AND...in the event that a shunt is NOT 100% successful, whatever percentage is left--they can treat with pain management, which her daughter has been taking part of already/is apart of already...). Her daughter had 23 ACM sx's...she'd been diagnosed w/migraines, 'been through the ringer', been to the VERY best doctors, etc. QUITE an ordeal...radiologists had missed [at the BEST institution(s)] her ACM, etc...

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)

Fellow Neuro pt. aye?

Yes, although I'm becoming less of a 'neuro patient' all the time. Last surgery was in 1984. The shunt no longer works (as of 1990-ish) and the ventricles do the work on their own now. They decided it was easier to leave the shunt where it is. So basically I have no more neuro risk, just some cool hardware to impress my friends.