Welcome to my Website!
This site was made to help anyone get the information they need about Chiari Malformation/Syrinx or get support for any issues or questions you may have. I know there are alot after being diagnosed and that all the information is overwhelming. And that is completely normal. We all felt that way. I had 2 weeks from diagnosis to surgery. Thats not much time for something that's so overwhelming. And in alot of cases life changing. Some of us are worse than others but we are all still dealing with chiari and it's many issues no matter how strange they are. Sometimes they can be strange enough that we feel alienated. But the more we learn and share the more we find that we are not alone, that other people have actually experienced our strange symptoms too. Thats why sites like this one are so important. The more we can saturate the web with information the easier it will be for people to find information they need.
For anyone who would like to read about one mans journey through this condition from beginning to end I recommend this book by
Ray D'Alonzo
Contents Under Pressure: One Man's Triumph Over Chiari Syndrome
Description:
The story of one man's struggle with and triumph over an uncommon neurological disease known as Chiari Malformation Type I of the Brain is told. The journey from emergence of symptoms to diagnosis to brain surgery to recovery is described in detail. In this second edition, appendices have been expanded to include more technical and related material. All proceeds from the sale of this book are donated to Conquer Chiari.
Order Your Copy Here:
http://books.lulu.com/content/174364
Enjoy Your Visit
I hope that every one of you who visit will find the information you need here. And take part in the Forum, part of helping others is that they don't feel alone in their time of need and need for support. So feel free to leave your stories and helpful information in the Forum. And I would like to Thank Everyone for your help in advance. This is a new site for all of my Fellow Chiarians whoever you may be. So Please use the Forum to talk with each other. Its open to all topics concerning Chiari/Syrinx or any complications you may be experiencing. I just ask that every be respectful to each other. We all deal with this in our own way. And we all have our bad days. But when we are having good days we can reach out and help someone else have a better day too.
A Chiarians Creed
Chiarian Prayer
The pain continues
Despite the operation I pray for relief… Find myself in desperation.
Each doctor tells me the same
“There just migraines, here is the pill”
The medication doesn’t work.
Don’t they know Im ill?
“Chiari Malformation? How u say it?”
I explain the disorder to each friend,
“How do you fix it ?”
I then tell I them there is no end.
I ve been on my knees.
I have been begging for a fix.
Yet I continue to hurt…
Prayer and pain don’t mix.
The tears are many.
We ve all felt the disappointment.
The next surgery will work!
Then another doctor’s appointment.
A thethered cord, spina bifida,
Scoliosis, the list goes on and on.
I WE, don’t see an end…
Will these symptoms last until we’re all gone ?
Dear God please find a way.
Fix our ACM before it’s too late.
You’re our only hope.
Until then we’ll have to wait.
Writen By Hitesh Kakkad (India)
bravenet.com