Someone I know

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Someone I know

Postby kirafaye » Sat Oct 18, 2008 1:40 am

This isn't my success story because mine hasn't happened yet. However I do understand the need to put any success we know of up so people can understand that there can be hope. A friend I made through the Aussie chiari group called Chloe has chiari 1 and also started to get a syrinx develop in her cervical region. I am told she was quite sick when she was younger and had lots of problems with her neck where her mother would sleep with her holding her neck a certain way so she could sleep. They were very worried as she was getting very sick and progresing rapidly. She managed to go see a Dr Stoodley in Australia and chose to get him to do the surgery even though they would have to pay the private fees and it would cost quite a bit for their family. I know she had a mildly rough time during recovery. She was about 15-16 at the time fo surgery and now after decompression surgery she is fine and this is years later. I only know of one brief scare where she got tingling in her hands but nothing bad ever came of that. She is now completly fine and functioning like any healthy person. And the developing syrinx is gone.

Yay
Australian CM/SM/EDS sufferer.
www.chiariaustralia.com - My page for Australian sufferers.
www.kirafayescorner.blogspot.com - My beauty/makeup Blog
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Re: Someone I know

Postby keggler » Thu Oct 30, 2008 11:52 pm

Hello---Kira you are on my mind alot ,and pray for you to get relief from this diease that is sometimes like a circle that goes around and around. Next time you get a chance think of the number 8 and think about how it is like life.When I had the worse pain, I'd think about it and where I was at the time in my pain and progress. The mind is a complated thing, and with your fight for life,you'll make it .

I know this all sounds weird----- and wish we could sit down and talk for a few hours----maybe I could explain the theory better. Just wanted you to know someone was thinking about you, that understands your pain---and how well you have progressed thus far.

Later your Carolina friend---Jerry (keggler)
"You are what you eat----and-----You are what you think"

"Be Good To Yourself"
.
CM1-S/M-Basilar Invagination
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Location: South Carolina


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