ANA Discussion Forum
AN Community => AN Community => Topic started by: anissa on March 10, 2009, 01:56:29 pm
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When I was diagnosed with AN I was also shown to have a Chiari I Malformation of 19mm. I mentioned it to my neurotologist but it he said it was no big deal and not to worry about it. I'll mention it again to my neurologist and neurotologist in my pre-op appointments. Is it a big deal?
In case you don't know, Chiari I Malformation (ACM) is a condition where the opening in the base of my skull is larger than it needs to be so my brain stem falls below where it should. I don't have many symptoms other than the power headaches and right now I can't be sure where those are coming from, the AN, the ACM, or this darn cold.
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Hi, Anissa - sorry to hear about your further diagnosis of the Chiari I, but you are in good company here, as our very own Phyl has this also. I'm sure she'll be along soon to offer her wisdom in this regard.
Best to you - hope you can get some relief from your headaches,
Cindy
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Anissa,
The headaches are probably caused by a combination of the three! The cold should be gone soon, the AN pretty soon too, and the Chiari - well if the doctor says it nothing to worry about, I'd probably trust him on that. Like Cindy mentioned, we happen to have a resident expert as a moderator here, so I know Phyl will be able to help you out.
Lori
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someone call me name? ;)
Hi anissa,
Yes, a guilty one here as well... a nice head combo diagnosis. I know of one other on this site (Tampa Tim as I lovingly call him) who, last year, had surgery on his AN and Chiari simultaneously... Raydean, a site user, has a daughter with Chiari as well (but no AN.... her husband had the AN).
My cerebellum slip is not as much as your's (and your's is also deemed mild). The headaches can be excrutiating but over the years, I've learned to deal with them as they crop up.
Great when I get a head MRI... a true "BOGO" (Buy One, Get One) as my docs can view the AN and my Chiari to see how I"m doing.
Last month, had my follow up with my neurosurgeon (a NS should really follow the Chiari) to see how mine is. I am symptomatic of my Chiari but not overly. Some extremity weakness, the migraines, balance, etc. As you note, sometimes its difficult to figure out which is causing the issues. I can tell my Chiari migraines as they are localized to my occipital area of my head (top of neck area).
If your CM1 is currently at 19mm, please make sure to find a terrific NS in your area to follow up. CM1 (or CM in general) is very rare (not like AN's, huh? :) ) and not many NS really know how to handle them. You will need to be monitored to make sure the cerebellum slippage doesn't go any further.
A terrific website for CM1 is:
http://www.neurosurgerytoday.org/what/patient_e/chiari1.asp
It fully outlines exactly what it is, treatments, symptoms, etc.
I can share that I still live a terrific, full life and we monitor it to see how its doing. I hope it continues to stay mild for you.
I am more than happy to discuss in PM (so we keep the posts here for AN)... my inbox is open.
this reminds me to get hold of Tampa Tim... baseball season is in full season again.
Hang in there anissa. Having and AN and CM1 does make us more rare than usual.... cuz we're speshal :) Remember that!
Phyl
P.S. Alka Seltzer Plus works great on colds! :) Feel better!
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Hi, I was reading your posts and saw the Chiari I Malformation....I too have that mine is it is 5mm extended below the foramen magnum.......but never looked into it as the doctors didn't seem all that concerned about it and more about the AN..which may now be a Lipoma....I looked up what the Chiari I is and didn't know about it at all!!
My original symptoms were sudden "bouts" of extreme pressure in my head from the back to the left side that felt like a head rush where my head was about to explode...they would last only a few seconds and happened only when straining...such as yelling, cheering, talking over loud sounds and the Valsalva maneuver. This went on for years until last Nov it happened when I was at the NY Ranger Game and they tied it up with 1 min left and I jumped out of my seat cheering and yelling I had one of these attacks but I almost passed out and it lasted for 15 mins and everyday since then I have headaches and balance problems....so all this led me to the MRI and the AN diagnosis...guess I should have looked all this up earlier....now I really feel like a mess....lol
So being it is "borderline" I guess nothing is done about these malformations?
My medical background is improving every day...lol
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[...]
cuz we're speshal :) Remember that!
Phyl
You don't know how right you are here! :)
Regards,
Brian
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[...]
cuz we're speshal :) Remember that!
Phyl
You don't know how right you are here! :)
Regards,
Brian
I'm feeling that more and more each day!
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Anissa,
I like the new pic, and the wee little urchin. :)
Steve
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That's my baby, its her first b-day today. ;D
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That's my baby, its her first b-day today. ;D
Hmm... (looking side to side and behind for the forum police)...nobody in site, good!
Happy Birthday Anissa's one year old!
What do you mean off topic? Steve started it! I swear!!
Ernie
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Anissa~
I have a March 11th baby too!! My YOUNGEST just turned 6 yesterday! I can't even believe it! Happy days...
K ;D
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Hmm... (looking side to side and behind for the forum police)...nobody in site, good!
*A-HEM!*
Aren't you suppose to be recuperating or sumptin'? ;) :)
Back to topic folks... and if possible, we can take the Chiari dicussion in PM/emails. Seems that there are a few of us "speshal" folks here.
Back on topic all...
(and happy 1st bday anissa-baby-cutie-patootie!)
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.....Lori runs in.....wishes Anissa's 1 year old little girl a belated happy birthday (she's adorable!)....drops halo on her way out to slow down the forum SWAT team....and escapes to safety....Phew... that was close. ;D
Lori
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*cracks whip at dropped halo* :)
so, is the discussion of AN and Chiari done here or do you all have further to share here on the topic? Any info I have regarding CM1 I am more than happy to share and the inbox is open (where the whip is tucked aside.....).
Thanks.
Phyl
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Anissa, I'm sure Cheri would be pleased if you posted the pic of you and the little one in the Pictures of Friends topic in AN Community. Then we can all gush and coo to our hearts content.
Phyl, I kind of like the idea of having a Chiari I discussion on the forum, I don't know much about it and like finding out what it is. Separated from baby pictures, of course.
Steve (* quickly donning his moderator hat *)
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Thanks for the well wishes and sweet words about my baby. I'll post pictures of my brood over in the other topic, thanks Steve!
There really isn't much more to say about the ACM. I guess I was just wondering if anyone else was dealing with it and if its a big deal. I'm definitely going to mention it to my neuro when I meet with him pre-op. Thanks Phyl!
Dawn, I have all those exact same symptoms and I just thought I was weird, not that there was a "condition". I've pretty much become accustomed to it and know what triggers the headaches. I now stay away from bowling and volleyball and when I watch the 4th of July fireworks I don't sit *under* them so I'm not looking straight up in the sky, that is a killer. Or I lay on the ground and watch them and thats pretty cool. Ahem, anyway, I always wondered why my eyes were so sensitive to bright lights and now I know. I totally know what you mean about yelling and screaming, I almost passed out at a Jazz basketball game for the same reason, ha ha.
I found a great list of ways to keep it at bay:
http://www.pressenter.com/~wacma/bhm-list.htm
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Phyl, I kind of like the idea of having a Chiari I discussion on the forum, I don't know much about it and like finding out what it is. Separated from baby pictures, of course.
Steve (* quickly donning his moderator hat *)
*readjusts newly-knitted moderator hat* :)
Move entire to AN Community for baby pics, Chiari talk (not keep in AN "Inquiries)?
Steve and anissa, if you are fine with moving this entire thread to AN Community to keep it going, pls advise... (Steve, if yes, go for it!) :)
*heads out for lunch hour*
Phyl
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Okay, did that. I am still waiting for Anissa to post a big picture of the little birthday girl, though. :)
So CM sounds like your whole skull is loose, or something. Brain slippage? Yikes.
Steve
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Thanks for moving this post. The OP really did relate to an AN regarding the surgery but it went away from there. I got my answer and I appreciate that. :) As requested I posted pictures of my baby and my family in the "friends" thread. :)
I guess I don't know enough about the ACM to really talk about it. From what I gather mine drops down quite a bit but since I don't have a ton of symptoms (or chronic painful symptoms) there really isn't much to do about it. I am interested to see what the neurosurgeon says though.
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looks good folks... thanks Steve for moving.
anissa, one thing I will guide you on regarding the CM1 and upcoming AN surgery....... you need to inquire to the neurosurgeon about the positioning of your head during the surgery. As we know, with AN surgeries, some can be for quite a bit of time and with the slippage, you will need to know how your head will be positioned. Someone pointed this out to me when I was researching my AN surgical options and I also mentioned it to my Chiari NS .....
As for the baby, so.... how did we celebrate the big day? First bday cakes are usually quite fun! :) Was it a messy one? Piccies? :)
Phyl
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OH wow, I found this posting when searching the Chiari I malformation that shows up on my MRI too (along with my AN).
Well, no one has said anything about it to me.....I'm gonna make a phone call tomorrow! My biggest 'fear' with my upcoming AN surgery is the neck 'aches', pains that I get. Hmmmmmm, they sound exactly what yours all do. ?????
Phyl, I think I WILL be messaging you.
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Denise, my neurosurgeon positioned me on my side for the entire surgery because of the CM. I had to deal with some pressure sores on my left side because of it but it was cake compared to what the neck aches would have been. I'm glad you found this thread! Wasn't it lovely to receive two diagoses for the price of one?? ::) I hope all goes well with your surgery and keep me posted on how they handle the CM, I'm interested in knowing!
Anissa
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got the PM... and tickled anissa chimed in. :)
Phyl