Arnold Chiari Malformation - page 3

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... Read More

  1. Visit  unc005 profile page
    0
    LOL--less of a neuro pt. Cool. Sighs. *I* thought I was until LAST yr. LOL! GRR! (Seriously) :-/:smackingf *sighs* and *shrugs* It's 'life' though...no biggie. Fifteen yrs. or VERY darn close to it was a 'good run'. LOL Add in the migraines (DUE to the SURGERIES last yr.!!), and...ARGGHH! LOL...oh well...*shrugs*.

    WOOOOW! 1984!! I was 2y/o...or thereabouts. LOL! Sorry the shunt no longer works...sighs. Are you worried about that/do you worry about that? (i.e. that something might happen) I'm glad your vents decided to work on their own--YAY!!! When were you initially shunted? How many surgeries/revisions did you have in all? I hope you don't mind all the questions.... I apologize if you do/for being nosey:imbar. 'They decided it was easier to leave the shunt where it is.'--uh huh! That's the 'general consensus'/usually what happens...FAR too risky to remove it. That's what happened LAST yr. w/my NOW non-functional shunt. My NS removed the proximal catheter, but left EVERYTHING in from the neck down and told me it'd have been FAR too risky to remove the rest due to risks of hemorrhage and infection. I was like "FINE with me!!" LOL! He also said he'd have had to make twenty tiny incisions all down my body to remove it, and I was like "Uhhh, no thanks--don't think so! It can stay put!" ROFLMAO. Yikes! *shudders* I've had AT LEAST *one* shunt infection that I KNOW of...I don't/didn't want ANOTHER...of course, I was 3 y/o then...but!...nonetheless...yeesh!

    I didn't want to acquire a shunt infection, have to have an EVD, be on abx for the duration required, have ALL that set me back 2-3 wks. or MORE!, and THEN be reshunted...! Good grief!! ARGHH!

    It's VERY 'weird' though just having the catheter from the neck down in--well, being able to FEEL that portion (however, I can ALSO feel tubing in my head that seems like it's from the old shunt too...soooo...hmmm...I dunno...LOL! Just plain WEIRD!). This has 'ALL' made me think ever since then...*ponders*.

    'So basically I have no more neuro risk, just some cool hardware to impress my friends.'--glad you no longer have no more neuro risk...'...just some cool hardware to impress my friends'--LOL! Yeaaahhh! Niiicee!

    BTW: I LOVE your quotes!! LOL! Very cool! Secondly, good luck on your LSATs! Are you getting out of nursing/going away from nursing?? Lastly, I have ALWAYS had an AVID interest in neonatal nursing (specifically, Level III). I'm in NC, and have ALWAYS had my heart set on UNC/had planned on working in THEIR NICU. Ironically, their NM was one of my nurses, or MAY have been one of my nurses when I was there...she lead me through a tour of the NICU that I stayed in (which was 2 mo. before they dedicated their new Women's and Children's Hospitals), and even visited me when I had my first brain surgery last yr. She was on her way home, but she managed to stop by for a few minutes (I'd emailed her and told her I was in the hospital there, and if she *wanted* to, she could stop by and see me...I was SHOCKED that she did...as I hadn't seen her since she gave me the tour and so forth--which had been 4 yrs. before...!).

    Take care

    Hope you're OK

    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#12,14 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)
  2. Visit  EricJRN profile page
    0
    Quote from former_premie
    LOL--less of a neuro pt. Cool. Sighs. *I* thought I was until LAST yr. LOL! GRR! (Seriously) :-/:smackingf *sighs* and *shrugs* It's 'life' though...no biggie. Fifteen yrs. or VERY darn close to it was a 'good run'. LOL Add in the migraines (DUE to the SURGERIES last yr.!!), and...ARGGHH! LOL...oh well...*shrugs*.

    WOOOOW! 1984!! I was 2y/o...or thereabouts. LOL! Sorry the shunt no longer works...sighs. Are you worried about that/do you worry about that? (i.e. that something might happen) I'm glad your vents decided to work on their own--YAY!!! When were you initially shunted? How many surgeries/revisions did you have in all? I hope you don't mind all the questions.... I apologize if you do/for being nosey:imbar. 'They decided it was easier to leave the shunt where it is.'--uh huh! That's the 'general consensus'/usually what happens...FAR too risky to remove it. That's what happened LAST yr. w/my NOW non-functional shunt. My NS removed the proximal catheter, but left EVERYTHING in from the neck down and told me it'd have been FAR too risky to remove the rest due to risks of hemorrhage and infection. I was like "FINE with me!!" LOL! He also said he'd have had to make twenty tiny incisions all down my body to remove it, and I was like "Uhhh, no thanks--don't think so! It can stay put!" ROFLMAO. Yikes! *shudders* I've had AT LEAST *one* shunt infection that I KNOW of...I don't/didn't want ANOTHER...of course, I was 3 y/o then...but!...nonetheless...yeesh!

    I didn't want to acquire a shunt infection, have to have an EVD, be on abx for the duration required, have ALL that set me back 2-3 wks. or MORE!, and THEN be reshunted...! Good grief!! ARGHH!

    It's VERY 'weird' though just having the catheter from the neck down in--well, being able to FEEL that portion (however, I can ALSO feel tubing in my head that seems like it's from the old shunt too...soooo...hmmm...I dunno...LOL! Just plain WEIRD!). This has 'ALL' made me think ever since then...*ponders*.
    Just typed a LONG reply, but my computer gave me an error. Internet connection must have goofed up. I'll send you a PM though.
  3. Visit  unc005 profile page
    0
    LOL! Cool! I got an e-mail from allnurses saying my Inbox was (is) full:imbar (Sorry!!)--I need to do some 'cleaning'--LOL! Sighs... Sorry--I JUST got on here...I'm battling PC problems w/my Mom's boyfriend's computer...ROFLMAO! GRRR! :angryfire:smackingf Oh well...seems to be OK...for NOW! Sighs...

    We shall see...I'm in the process of getting Mom to help me with refiling my financial aid (so I don't screw up...did it LAST yr. MYSELF--my sister was SUPPOSED to help me, time was FAST approaching, etc. and well...I had to redo things 2-3 times...GRR!), AND she's going to sit down and check my flight info. (supposedly she booked me w/Expedia:smackingf)...LOL...so...I'm kinda stressin' *just* a TAD! I also have a doctor's appt. this coming wk. (on the 18th), as well as I need (rather, it's been *suggested*) to get a medical plan in writing to take with me in the event I need to go to the ER (or even urgent care) re: my migraines.

    I was SUPPOSED to have a post-op. CT scan/check up w/my NS initially Dec. 5 (had to cancel due to school conflicting...), rescheduled THAT appt. for Jan. 9 (cancelled THAT one for the same reason...SCHOOL!...GRR!), and have NEVER heard back from them so...I'm going UNPREPARED (i.e. NO scans!!) down there (from NC to FL). Oh well...something happens...'it' happens. I know, I know...I'd be SCREWED! I'm doubtful but considering...well...I was VERY much hoping I would be able to go with NO worries (ESEPCIALLY shunt-wise, considering I JUST had two surgeries LAST yr.--and FURTHERMORE...ONE being a SHUNT REVISION!!), with my scans (on CD ROM), etc.

    I'll just go, hope and pray for the best,...ya know? Good thing I'll be SMACK dab between Tampa and Orlando (LOL)...*nervous laughter*. My sister told me "Well, if ANYTHING happens...we're only a 12 hr. drive". Gee, thanks ALLIE!

    I'm excited, but still nervous...haven't flown since 2000--even then, that was my FIRST ever flight (that I can recall)--and I was NOT diabetic then, did NOT have migraines, etc...GRRRRRRRRRRR!

    I have shunt tenderness (primarily the catheter that runs the length of my neck--and sometimes the tubing in my head, whether it be the 'old' tubing or NEW...yesterday I started having pain and tenderness right where the neck incision was (for last yr.'s revision) which doesn't worry me--it's just more of an 'inconvenience'; it's STILL present today). There was not (and still is NOT) any redness or swelling, so...WHEW! I know the percentages re: shunt infection and what 'risk(s)' there are at a certain time after revision and so forth...(or initial placement, of course). It just bugs me...

    I knew I was in trouble last yr. when I started exhibiting s/s...even after close to !15! yrs. of NOT having a revision. That was one of my fears--NOT being able to recognize (*myself*) what the (potential) s/s might be/were...but *I* knew...OH BOY!! Good grief! :uhoh21: It was interesting how 'events' transpired though...and so forth...(for each surgery).

    OK, I'll shut up now...LOL!

    Take care

    Hope you're doing OK!

    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#12,14 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)
  4. Visit  gwenith profile page
    0
    Can I bring this thread back to it's original topic - which was the treatment of Arnold Chiari Malformations.
  5. Visit  EricJRN profile page
    0
    Quote from gwenith
    Can I bring this thread back to it's original topic - which was the treatment of Arnold Chiari Malformations.
    Thanks for the reminder. Digressions from the original topic are normally my biggest pet peeves on here. Don't know what happened in this case.

    Here is another link to get us back on track:

    http://www.ninds.nih.gov/disorders/chiari/chiari.htm

    Note that this NINDS page has links to several organizations and also links to clinical trials that are ongoing for ACM patients.
  6. Visit  unc005 profile page
    0
    (Blame) me...that's what happened. But...back on topic...

    I apologize.

    Proceed...

    Erin
  7. Visit  Evieanne profile page
    0
    hi gang

    I am a registered nurse and i'm also a zipper head as we chiarians are fondly referred too after decompression surgery lol.
    it is my experience that the size of herniation is not as important as the symptoms the patient is experiencing.
    The world arnold chiari malformation site is a good site for info, also The chiari institutue in new york has tapes for sale online about chiari's. i've found some wonderful sites about this annoying and frustrating defect. I hope these two sites give you the info you were looking for.
  8. Visit  NeuroMedic profile page
    0
  9. Visit  bladensburg,OHrn profile page
    0
    Evieanne: Thanks for the info about the site with the tapes. Much thanks to everyone who has responded to share info, or websites to check out. I'm getting a lot of information by checking these out. Greatly appreciated !


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