I so feel for you and your son. This post hits close to home, as my son is 13 (will be 14 on the 23rd of this month, Dec.) Actually the verdict is still out on whether or not Chiari is heriditary. From what I've read over the past few years, they (specialists) can neither confirm or deny how genetics may or may not play a part. My son actually recently had surgery to correct a nystagmus (which is a common occurance in/sign of CM). He also has frequent headaches (mild) and some balance issues. All of these I grew up with as well as a child, teen and through my 20's.

Let me start of by re-stating that I am only a survivor of ACM, I am in no way, shape or form a doctor, specialist or anything else with credentials. (Although I can cook the best porkloin in West. KY ) However, as a mother and post-op Chiari surgery patient, I'm more than happy to discuss worries, fears, trials and tribulations with ya..... and of course give my opinion on the above stated things, which yer more than free to take or leave as ya see fit.

I would not change having surgery if I could. I consider it a complete success, my NS was absolutely WONDERFUL, my neuro is a darling. However, my recovery time was over 2 months before I began feeling normal again, the amount of pain was over-whelming the first couple of weeks, even with pain meds, muscle relaxers and neuro-blockers et. al.

I would tell anyone with children considering the surgery, especially teenagers, to make as sure as possible that the doctors you speak to are extremely well versed in Chiari and the surgical aspects themselves. Next, speak with your child about how and to what extent these issues are affecting him. I'm not sure about the skin condition you mentioned, not sure what the initials stand for, so sorry . Or how it might be contributing to his symptoms.

My biggest tip/advice though, is dont let anyone make you feel stupid about a possible CM diagnosis.... and dont let em make you feel like a hypochondriac either. Chiarians have a multitude of presentations. The way it was explained to me, is it all depends on how much pressure is being exerted and where exactly the pressure is being placed what symptoms we present with on a daily, even hourly basis. Symptoms can change dramatically with body posistion, or even a simple change in head posistion...... so you can be having leg pain one minute, then headache, then all of a sudden you cough and the world is spining backwards in a spiral.

Anyway, hope all this blathering helped some. Feel free to ask more questions as you have them, or if I didnt explain something, chalk it up to a Chiari moment and ask again LOL.

I will keep you and your son in my thoughts and prayers. Keep us updated on how ya'll are doing!!!!

God Bless Ya!!!

Dawn