About Me: Female, Jersey Shore, NJ, member since Jul 2012
I'm Michelle, single Mom from the Jersey Shore (NJ). My 5 year old son Jacob has Chiari 1.5 Malformation (diagnosed summer 2012). with 27mm tonsillar herniation, brainstem herniation, retroflex odontoid and borderline Platybasia. (No syrinx, tethered cord or scoliosis
[More]). Jacob also has chronic motor delays, sensory Integration issues, and other benign cardiac and respiratory issues that may be related to his Chiari.
We've already met several Pediatric NS's who all recommend surgery. In the process of doing some testing and getting a couple other NS opinions before surgery.
Hello. I'm new to the forums, as well as new to the whole Chiari deal. I don't know how to send you a message personally, so I hope I'm not bothering you. My 7 mos old daughter had just been diagnosed with type 1 CM, as well as hydrocephalus. We are in the process of evaluating NS, and noticed your blog. You have apparently been in contact with a few that we've contacted, or attempted. I was wondering what your thoughts were of Dr Frim (that was one we favored though we haven't been able to contact him yet. Also do you have any experience w/ Dr Feldstein, Lazareff, or doctors at Duke Univ? Not sure if you've went ahead w/ surgery or not. Thanks for giving me a little of your time, an good luck with all of yours. Prayers for you... Chris Lamb
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