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Hi all

Just a quick note to say that I haven't dropped off the face of the earth. It has been a really busy summer with the girls home from school,...

What is she talking about?

For those of you that don't know about my diagnoses-especially my family and friends-I thought I would explain a bit....

Pilgramage to the Chiari Institute

I went to The Chiari Institute this Summer for a consultation with Dr. Bolognese. I get asked all the time "Was it worth it?" YES, YES,...

Dear Canadian Neurosurgeon, please proceed to the next century

This is how I feel after the two neurosurgeons I have seen in Canada. After my initial diagnosis of syringomyelia, I was still left with a...

In the beginning......there was a syrinx

On November 4, 2005. I woke up early at 5:00am, lifted my head off the pillow and turned it to look at my alarm clock. This insignificant action...

Latest Activity

process-indicator
Cheryl-Anne wrote on Caroline's Whiteboard. May 09 2010
Cheryl-Anne wrote on Caroline's Whiteboard. May 09 2010
KES wrote on Caroline's Whiteboard. Feb 24 2010
Caroline's Whiteboard
May 09 2010 by Cheryl-Anne

My question to you is well did your fight go?

We have been told that OHIP is suppose to cover any care outside Canada if they cannot provide it here. I am prepared to fight them with all I have, including going to the media if I have too.

Do you have any advice for me?

 
May 09 2010 by Cheryl-Anne

Hi, our neuro believes our daughter has Chiari O, EDS, Cranial Settling and we know IH. I have shown him the research on Chiari O and he believes us. He has even sent her files to TCI for help, because no neurosurgeon in Canada will touch her. We are going to TCI for the testing as they emailed me and believe she should be seen.  Our plan is to find out they think she needs and then fight for OHIP to cover it. More in next post....

 
Feb 24 2010 by KES

Hi Caroline,

Have you ever heard of Chiari being associated with having Lyme disease? 

Our 17 yr. old daughter sadly had Lyme disease when she was little and she was not medically treated properly for it. Now, years later, I can't help thinking her 7mm chiari is in some way associated with her having the Lyme.

I appreciate any input you, or anyone else, has on this subject.  Our family is new to Chiari but we are learning fast. 

Have a nice day,

KES

 

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