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Chiari Malformation Community
5.19k Members
48 Responses
620923 tn?1452919248
COMMUNITY LEADER
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?
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
620923 tn?1452919248
COMMUNITY LEADER
Maybe we can do that Thursday.....THURSDAY's RELAXATION TECHNIQUES ?

1041839 tn?1278685446
i like that one! Its a go! ;)
620923 tn?1452919248
COMMUNITY LEADER
: D
620923 tn?1452919248
COMMUNITY LEADER
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?
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
620923 tn?1452919248
COMMUNITY LEADER
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 : )
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.....
620923 tn?1452919248
COMMUNITY LEADER
hmmmmmmm ok....I can't rememberwhat my memory was or wasn't either.....lol....

so haw many are using the Health Pages?
620923 tn?1452919248
COMMUNITY LEADER
I really want to know....how many have looked at all these pages??
1041839 tn?1278685446
I have act not lately bc my phone wont pull them up but when i looked at them they were helpful!
1175033 tn?1492204828
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!!!
620923 tn?1452919248
COMMUNITY LEADER
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"
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

620923 tn?1452919248
COMMUNITY LEADER
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
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..
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.
620923 tn?1452919248
COMMUNITY LEADER
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.
1150700 tn?1288119208
I read them. It's wonderful to have this list instead having to search for each indiviual topic on the internet.
620923 tn?1452919248
COMMUNITY LEADER
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.
620923 tn?1452919248
COMMUNITY LEADER

Wanted to let u know MH fixed the hyperlink problem
620923 tn?1452919248
COMMUNITY LEADER
620923 tn?1452919248
COMMUNITY LEADER
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