edslisa
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Registered: 04-2008
Posts: 19
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My favorite links..
www.conquerchiari.org
www.asap.org
www.thechiariinstitute.com
www.ednf.org
www.ehlers-danlos.org
http://www.ehlersdanlos.ca/
http://www.neurosurgerytoday.org/what/patient_e/tethered.asp
http://www.answers.com/topic/tethered-spinal-cord-syndrome?cat=health
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4/2/2008, 2:30 am
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horseshadowrider
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Registered: 03-2008
Location: Washington state
Posts: 1961
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Re: My favorite links..
I enjoyed those links, Lisa, thanks. I love to keep learning, even about things I don't have!
Here is a link to a report from several doctors, including Dr. Tator in Canada, where I also learned a lot. http://www.thejns.org/doi/pdf/10.3171/spi.2006.4.2.123?cookieSet=1
If that wraps around and the link won't work, then use this one:
http://www.tinyurl.com/3dhufh
I like having "Links" as a separate topic, it will make it so much easier to find things!
thanks and blessings
Last edited by horseshadowrider, 4/2/2008, 7:53 am
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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4/2/2008, 7:51 am
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kktacoma
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Registered: 04-2008
Location: Tacoma
Posts: 36
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Re: My favorite links..
I love www.butyoudon'tlooksick.com
mainly because I am a mom taking care of a chronic kid and it really helps me have other adults describe what it feels like because she has a hard time expressing what is going on both because she is 9 and the brain damage her decompression did.
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Karma
Mom to Melissa; Chiari malformation, Hereditary Sensory Autonomic Neuropathy, Metabolic disorder NOS, Non Verbal learning disorder, chronic pain,
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4/9/2008, 9:53 pm
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horseshadowrider
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Registered: 03-2008
Location: Washington state
Posts: 1961
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Re: My favorite links..
Hi Karma, welcome! I'd forgotten about that website, it's a great one. Isn't that the one that has the Spoon Theory? I love that!
I figured that parents would appreciate reading how adults feel and deal with these things so that they would understand what children are going thru. Even for adults, it's so hard to put words to pain.
Oh, here's another great site:
www.painonline.com
It's a pretty intelligent site, I enjoy wading through it sometimes.
Anyway, Karma, it's hard enough for adults to find the words, I can only imagine the difficulty and challenges for children.
God bless you, you are a brave mom with many challenges of your own.
hugs
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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4/9/2008, 11:34 pm
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