Chiari Malformation Community
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About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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HEALTH PAGE LINKS ~

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48 Comments Post a Comment
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620923_tn?1405964489
I know some of these could use some updating, but if there is a page we do not have please let me know.....
I am working on creating one for what to take to the hospital/ list of ?'s for the NS.....

Ne other ideas?
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1041839_tn?1278685446
Selma what about doing a "relaxing techniques"? Like our dr thread things that have worked for members. Or maybe we should just start a thread.... Just one of my wandering thoughts lol :~P Shannon
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620923_tn?1405964489
Maybe we can do that Thursday.....THURSDAY's RELAXATION TECHNIQUES ?

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i like that one! Its a go! ;)
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: D
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620923_tn?1405964489
I was hoping for more comments....is everyone using these pages for info?

What other than the additions I mentioned above would u like to see in the Health Pages?
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999891_tn?1407279676
What about things to avoid, we all have activity's that make our symptoms worse but what about things the doctors say we can not do.....My NS has said no physiotherapy on my neck because of the risk of more damage.

One of the common questions that comes up is about exercise, what is safe for you that kind of thing, from the patient point of view

Ray
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620923_tn?1405964489
http://www.medhelp.org/health_pages/Neurological-Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

this is third from the bottom of the list...maybe it can be updated, but we do have one : )
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999891_tn?1407279676
Gosh that is not showing on my computer LMAO
yes we could update it.....
My concentration & memory is not what it used to be....Well I cant remember what it was like before so.....
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620923_tn?1405964489
hmmmmmmm ok....I can't rememberwhat my memory was or wasn't either.....lol....

so haw many are using the Health Pages?
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620923_tn?1405964489
I really want to know....how many have looked at all these pages??
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I have act not lately bc my phone wont pull them up but when i looked at them they were helpful!
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I looked at them. I found it very informative!!! Having all that info together is a great resource, Its nice to know you are all here to talk to. I was just wondering about the do's and don't's. It's so crazy how you all have been able to tell me more than the doctor's!! That isnt right because they get paid not you!!!
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620923_tn?1405964489
Well we r just passing on what we have learned along the way...some of our journeys r longer than others...and I know I hope to shorten the journey for others if possible....no one should have to go yrs of drs not knowing or caring to find out what is going on .

"selma"
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980510_tn?1282014546
thanks for the links i learned somethings i didnt know
and now i have those acronyms so now i wont be asking what some of them mean LOL...
I will have to print it out and hang it by the computer lol

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620923_tn?1405964489
Has neone had a problem with ne of these links working?

Please let me know...I had one report and am not sure if it was a temp thing or her comp.

Thanks
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980510_tn?1282014546
ok well this morning no matter what i clicked on said "file not found"

but the other day it was just the doctors list that i had issue with..
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1088046_tn?1272288996
It's saying file not found because the whole link isn't "hyperlinked". Highlight the whole thing, i.e. http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186  from the http: to the CID=186, and paste that into your browser address bar. It may have to do with the length of the link, not sure.
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620923_tn?1405964489
The other way is to go directly to the icon for the Health Pages top right of the screen : )

If there r neother issues getting to the Health Pages Please let me know.
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1150700_tn?1288119208
I read them. It's wonderful to have this list instead having to search for each indiviual topic on the internet.
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620923_tn?1405964489
Thank you for the note of appreciation...U can request a Health Page be done on different topics and we will try to get it done.
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620923_tn?1405964489

Wanted to let u know MH fixed the hyperlink problem
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bump
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1199758_tn?1280752681
Hmm... seems to me that um.... "no flying on the Space Shuttle" would fit in that list of things we can't do, lol.  Of course, that COULD really just be a "Friday Fribble".

Scottie
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620923_tn?1405964489
Well it is a Friday Fribble for sure : D
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bump
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1285653_tn?1288362229
Selma,

thank you so much for bumping this up. I couldn't find it....hahaha!!!!

you are so SWEET!

Whit
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Thanks for the links. Very informational!! :)
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U r welcome : )
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i never knew you werent supposed to put your head back like that when your at the hair dresser,....no wonder why my head killlllls after the hair dresser washes my hair...thats good to knowww!
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Glad we were able to give u some info u had not been aware of.. : )
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1388357_tn?1280193093
Hi Selma!  I have definitely been using them!  Thank you for all your hard work - you make the pain better by not having us work so hard!!!  You're a doll.

Has anyone purchased that Chiari pillow?  

Lisa
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620923_tn?1405964489
I know a few that have, not sure if all like it...and it is not easy to feel it first...I do like my pillow and only 9.99 at Target..it is called re shape able.....very fluffy...love it!!

Glad these links r helpful : )

"selma"
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1388357_tn?1280193093
Oooh, and the price is much nicer too!  Thank you for the tip!

Lisa
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620923_tn?1405964489
no worries : )
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bump for new members to help them locate the Health Page info they r looking for : )
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bump
please use these links and the Health Pages for more info on chiari and related conditions...and drs lists, tips for the hospitals stays and more : )
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620923_tn?1405964489
Here is the LINKS page...it has LINKS to non profits like Angel Flights and other ways to help with financial matters when facing surgery.

http://www.medhelp.org/health_pages/Neurological%20Disorders/Links/show/538?cid=186
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use the Health Page links to get more info.......
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Thanks for all the helpful information
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620923_tn?1405964489
glad it is of help : )
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I hope u all use these links to find the pages we created to help keep important info close at hand......

We have several pages of info with in the Health Pages for Chiari, Syringomyelia, Tethered cord, etc.......

If there is a page u would like to see, please post it here : )

  "selma"
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  BUMP
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New Link for the Links Health Page -

WINGS FLIGHTS OF HOPE www.wingsflight.org
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         I hope u all use the Health Pages as they have an abundance of info that can be very helpful....if u need info u do not see,let us know...we can always create a new page : )
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