Monday, October 26, 2009
Knowledge Is Power!
I have a very important announcement to make regarding ACM education. I received a letter in the mail from the Cleveland Clinic inviting me to an awareness program designed to educate and inspire physicians and healthcare providers, patients, their friends and family, and the public. The letter is from Mark Luciano, MD, PhD. He was not my doctor but I think he is Dr. Di's boss. Anyway, his topic is "Are Children Just Little Adults". It doesn't mention any other speakers but it should be an interesting lecture. I would love to go but cannot drive myself thanks to ACM. My brain cannot process heavy traffic :( I really wish I could be there. This is fantastic because it not only brings about Chiari awareness, but also about the endoscopic decompression option so few Chiarians and doctors know about. Let's all send positive thoughts, well wishes, and prayers to Dr. Luciano and the awareness program. Let it be a phenomenal success!
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6 comments:
wow! Just wow!
We need to get this in the UK! A little too late for me....but brilliant! Thank you for sharing this!
I appreciate your site. I have a daughter, 7, one of a twin with Chiari, syrinx, and scoliosis. All Childrens in St. Petersburg, FL, has recommended surgery. I am doing further investigating in order to find a surgeon along with other therapies to help her. Why did you choose, Dr. Di at the Cleveland Clinic? Any info. from your extensive experience would be so helpful. You can email me or otherwise, grundychrispin@gmail.com
I thought the best way to answer your question is out in the open so that others can read. I went to Dr. Heffez for the original diagnoses because he was a leader in recognizing "Chiari 0". He uses a special imaging place that takes amazing pics of the posterior fossa. Not even the Cleveland Clinics look like his. Anyway, then he wanted to cut open my brain and replace the covering with cadaver membrane! Yuck! No thanks! This surgery would also make me a zipperhead which is not appealing to me in the least. Have you seen photos of that scar? So I researched and found a doctor in Philly who performed the surgery via endoscopy. I found a blog about him from his patients and they basically said he was a conceited jerk. I do not do conceited jerk well, so I kept looking. Then I found a blog by a teacher (I believe in Texas?) who had had the procedure done at the Cleveland Clinic by Dr. Di. That is how it got started. I called the Clinic and set up an appointment. So very glad I did! I do not post anymore pics because there is nothing to see. My hair covers it completely. The only thing that is left of my brain surgery is a one inch indentation within the hairline where the skull was removed. I feel better. There are still residual effects but there would have been regardless plus the added effects of slicing your head open from crown to mid neck! My dura was never entered. The first two layers were scored (split open) and the last layer still lays unbroken, protecting my brain. Dr. Di is my hero. I was out of the hospital in 24 hours. The first month wasn't exactly a party but wasn't so horrible I prayed for death, either. You have a little girl who has her whole life ahead of her, please do not burden her with the disfiguring old hatchet job most doctors have performed since the 1950's. At the very least, make an appointment at the CC and have Dr. Luciano or Dr. Di take a look at your daughter. I sincerely hope you and your family find peace. Make sure you check out TCI's videos. I wouldn't go there and get surgery but their videos are very informative.
Lori, has this program passed, or is it still coming up? I would like to mention it to my Dr. if it hasn't taken place yet. And, hey! If it's the last day of March/first few days of April, Steve and the kids can go get an education while I recoup from surgery! :)
((HUGS)) & Blessings!
Lori
Nope, its done. I would have loved to go, but thanks to Chiari my brain cannot process multiple things at once. Cleveland traffic is quite congested at times and my brain gets overloaded with the info. I am not a multi-tasker. Thank you Chiari :)
And hopefully you do not have to stay in Cleveland too long. I was only there overnight.
Much love
Lori
I wanted to share this link, which helped me to get my daughter into a therapy, which has since and to date erased her symptoms of Chiari, Scoliosis etc. I know each case is individual, but with surgery being her only outcome for a long time this came like a magic trick. We are seeing a Cranial Osteopath, Dr. VanBuskirk, Sarasota, FL my research took a turn after many talks personally with neurosurgeons who've been around forever and had brain surgeries of their own and this article by a Cardiologist, http://www.prohealth.com/library/showarticle.cfm?libid=7747
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