Thank you Dr. Diana :)) It actually has a meaning: “H” stands for “healthy” or “happy” depending on what I need at the moment :)), “t” for my name, and 888 is a powerful code from Egyptian numerology. It represents victory, power and eternity (8 turned sideways = eternity). Before this whole EDS/POTS/Chiari fallout happend to me 8 months ago, in my spare time I had studied Egyption Code of Destany and how our name and birthday can tell about our soul purpose and lessons in this lifetime, all mystical stuff. Good, old days… Now I spend all of my time reading everything I can get my hands on about EDS. Today got a paperback of the Driscoll theory in the mail, was so excited to read until I got to page # 16 where it says that “surgery may be inevitable if you have retroflexed odontoid”. This is what I “think” I have; sent my paperwork to TCI and waiting for thier reply. Will see where it takes me… This is the only time when I wish I was wrong!!!
hank you in advance for your feedback.
This is tough, Hon, I don’t have any advice for you about the genetic screening, especially not knowing anything about your case… I usually am a “knowledge is power sort of person, though.” Now, on surgery, TWO neurosurgeons recommended LP’s, neck fusions, Chiari surgery (“Chiari Zero”) and even wanted to consider the zipperhead surgery for both my son and I. I could see the evidence of cervical instability on the MRI and the pannus. But I really felt like something was getting missed because my son and I were both virally induced. I believed it couldn’t be totally anatomical… Understand, though, I had gotten to the point where I couldn’t turn my head without feeling like I was passing out — I had ALL of the symptoms of a retoflexed odontoid and Chiari. Worse, I was ready to have my head decapitated — I just couldn’t hold it up any more. Cervical collars were the norm, but not a panacea. The morning after I lowered my pressure with Diamox? SYMPTOMS GONE. Thank Heavens, my son had the same response. External communicating hydrocephalus is almost never properly diagnosed, but especially with our laxity, it can exacerbate all of the signs and symptoms of Chiari and retroflexed odontoid. Once my brain floated again, that loose odontoid became asymptomatic. So, caution is the word of the day. For those folks whose odontoids are giving them a “brain kabob” even when their brains are floating nicely, and they have Diamox working well, THEN options are more limited. But PLEASE exhaust all of your options first, OK? 🙂 Diana