Living with an Arachnoid cyst, and now brain sagging and a Chiari Malformation, can sometimes be more than I can bear. But day-by-day I deal. I live with chronic pain, headaches, dizziness, balance problems, vision problems and more. It can be a real test of faith some days. What I lived through in getting a doctor to believe that my cyst was the cause and root of my problems, was nothing short of work. No one wanted to listen or believe. This is a common problem for so many people-doctors not really listening. And because they don't listen, or sometimes believe the patient, it can create more problems. That is what happened to me. The cyst was enough, but when my follow up doctor did not listen to me that something had gone wrong, I developed many new and other medical problems. My shunt had been over-draining for months and caused my brain to sag and caused the chiari. It was his ignorance, and lack of caring that created a whole new world of problems.
After everything I'd been through, I felt that my journey needed to be told. My story needed to be heard. So I wrote a book documenting my journey with my brain cyst. It's called, "It's all in Your Head," and it is going to be published next year. It will be out for pre-sales in the summer and sales...in the fall. I would love to be able to help those that are going through any similar experience. To know that there is a light at the end of the tunnel can be so reassuring for many.
I just wanted to let the followers of this site knowt hat next year my story will finally be told and I will keep everyone updated as it progresses.
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Hi Maria - Thanks for the update and letting us know about your book. Congratulations! You've been an invaluable member of this site, providing information to many women and men who've been dealing with arachnoid cysts. I have no doubt that your book is also going to help people in the same clear, compelling and compassionate manner. Please keep us posted on the progress of your book, and we hope you will also continue to contribute to EmpowHER.
September 27, 2010 - 6:05pmTake care,
Pat
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Hi Maria,
September 27, 2010 - 1:07pmCongrats on your book! I thought you may be interested in joining a group on EmpowHER. Your experience and knowledge in the area of Arachnoid Cyst may be beneficial to other members:
https://www.empowher.com/groups/arachnoid-cyst-support-group
-Christine
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I couldn't agree more. I have lived it, lived it, lived it....having doctors so quick to dismiss my suffering and concerns. I hope that my book will reach and touch others and inform them more of what they too, may be faced with when dealing with the medical profession. I hope not-but it is reality. Especially when you live with a rare medical condition.
Thanks for the congrats on my book. I will keep everyone updated to its release date.
Sincerely,
September 27, 2010 - 7:20amMaria
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Hi Maria
Thank you for sharing this and congrats on the book. I'm certain it will help others.
It is unfortunate that so many in the health care professions, docs in particular, dismiss their patient's experiences and don't listen. It has happened to me as well. That's why it is so important to advocate for yourself. You know your body best, and you know when something is really wrong. If you have a doctor who won't listen, find a new one. As you have found, your life may depend on it.
Best of luck with your book!
September 27, 2010 - 6:40amThis Comment