About Me

My photo
Virginia Beach, Virginia, United States
I am a wife,mother,and nana learning to live with a disorder called Chiari1 Malformation with syringomelyia & other disorders all related to the chiari.I traveled a long journey too find results and my wish is to help others find help thru my experiences.I have given up a career I worked hard at for over 3 decades, but the 1 thing that I lost, is I am unable to be the mother I had planned and should be to my daughters, and that by far is the greatest loss of all.I was happy to have validation but accepting limitations is difficult for one who was so active and independent and wanted so much more for my children, as we all do as parents. I made friendships that are more valuable to me than any pill. They make me smile, laugh, and cry,but most of all they saved me from the aloneness.My wish. after a cure is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be "Chiari what is that?" Wellcome to my journey into discovering all I can about my disorders and try to bring awareness and maybe share a laugh with someone and let them know that they too will never have to travel this road alone.

Sunday, September 21, 2008

11 year old in constant pain but labeled a Chairi failure

this 11 year old has had two surgeries and is now labled a chiari failure.

pain free

11 comments:

Anonymous said...

a chiari expert is a must . they are all over the us . where do you live?

Sheila said...

Virginia Beach, va Ifound one lsited from newspaper article on my site where a student in college jsut had the posterior fossa decompression in 2001 in whcih I have not been followed up with since I have an appointment in October so that's taken care of.
thanks sheila

Sheila said...

whats that mean i am new on her and my computer was acting up yesterday so I might of given the wrong address or somehting I have been going through alot this week so its just one more thing i am going to ignore, i got on to send to articiles to a new dx chiari mother and child bummer i am so sad for them, thats a hard one when i get better i'll check out whats up with this site,
Thanks for the info
Sheila

Sheila said...

my site is called that but its address is:
http://sheilaschiarijourney@blogspot.com
that should do it
I hope.
sheila in vrginia beach









i

kimberly said...

YOU ARE IN MY PRAYERS TO BE FREE OF YOUR PAIN

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