Guest guest Posted August 18, 2001 Report Share Posted August 18, 2001 Dear Amazing Folks, We are about to embark on zipperhead #3, and then hopefully the big bad monster (pain) will leave my family alone! tee he he First my daughter was dx'ed at 9 years. Decompressed at 9 1/2. The decompression was her 4th, but not last surgery. She has many other problems. Then I was dx'ed (after much run around - as we are learning is quite common with this entity.) in my thirties. Apparently looking back I was having symptoms that no one saw as valid since I was adolescent (well, to be quite honest - the symptoms are quite vague, and non-discript - then if that were not enough - they play hide & seek!). No wonder my parents thought I was 'out there'. We could probably understand a little better if we were not subjected to so many incredibly arrogant/ignorant opinions - why we look a little 'off'...:0) Now onto zipperhead #3, with the lovely controversial 'minimal herniation'. Finally, someone agreed that missing 30 days of school a year, living in pain, and vomiting up your insides isn't acceptable or normal (for lack of a better word!)...particularly when your brain is sliding past your skull. My son (Glenn) will be decompressed coming up on 8/22/01 (date has been changed several times.) Please keep the little bugger (well, he is almost a dreaded teenager! ha) in your thoughts and prayers...:0) Thanks for being a wonderful group of people, and being here, N--->ACM 1 (successfully decompressed), mom to 10 years Budd-Chiari (successfully decompressed & Noonan Syndrome = heart, gastro/growth, eye, & bleeding dx'es, and Glenn 12 years ACM 1 (fighting against the idea that he is even sick... Ah youth!), wife to Bob - the computer geek...in NJ. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.