Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 My twins do not have TC but both have Chiari Malformation. One of them had almost no problems and we found out only because Frim insisted they both be tested since the boys are identical. had problems for years with headaches and what the family calls " seeing stars " . Bob had no problems but the school nurse called today telling us he said he saw " snow " , began a headache, then nearly fainted on the treadmill -- although he was really working out hard. The nurse amazing figured out what it was and called to say she was putting it in both of their records to make sure the local EMT's did not yank their heads back too far if they ever needed to put in an airway. Both kids are runners. I assume any and all sports scholarships have just become impossible? They are not going to be happy since they have done both Cross Country and Track since Junior High. Sorry to bring this up here but I know many of us have both TC and Chiari and that list is overfull. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Hey .... Â Did you ever get the post card I sent you from " DENIAL " ?? Well, I just wanted to point out an interesting fact to you... Â That doctor of yours, knows a thing or two about Chiari you may just wanna touch base with him about some of your worries.. Ironically, he too is a avid runner!! Maybe the doc can share some ideas!! Talk to you soon, Tommi www.caringbridge.org/visit/amandapeters Subject: Denial of Chiari To: tetheredspinalcord Date: Friday, February 5, 2010, 3:17 PM Â My twins do not have TC but both have Chiari Malformation. One of them had almost no problems and we found out only because Frim insisted they both be tested since the boys are identical. had problems for years with headaches and what the family calls " seeing stars " . Bob had no problems but the school nurse called today telling us he said he saw " snow " , began a headache, then nearly fainted on the treadmill -- although he was really working out hard. The nurse amazing figured out what it was and called to say she was putting it in both of their records to make sure the local EMT's did not yank their heads back too far if they ever needed to put in an airway. Both kids are runners. I assume any and all sports scholarships have just become impossible? They are not going to be happy since they have done both Cross Country and Track since Junior High. Sorry to bring this up here but I know many of us have both TC and Chiari and that list is overfull. M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2010 Report Share Posted February 8, 2010 LOL, he's their doctor. I imagine it was just getting a bit crowded in that room by that point ;-) What a delightful genetic legacy. And, even though I made them both sit through the recent CSI (where the young boy dies from aggravating CM) they still go to Six Flags. It doesn't even matter that one of them was so sick after a trip to Universal he thought he was going to die. Just a bit of DENIAL. Sorry, I missed the postcard, but thrilled you guys are kind of home. They more than likely hooked up the bladder stim on the wrong side so Medtronics is giving me one more set of programs before we give up and re-set the blasted stim. Aghhh..... M. > My twins do not have TC but both have Chiari Malformation. One of them had > almost no problems and we found out only because Frim insisted they both be > tested since the boys are identical. had problems for years with > headaches and what the family calls " seeing stars " . > > Bob had no problems but the school nurse called today telling us he said > he > saw " snow " , began a headache, then nearly fainted on the treadmill -- > although he was really working out hard. The nurse amazing figured out > what > it was and called to say she was putting it in both of their records to > make > sure the local EMT's did not yank their heads back too far if they ever > needed to put in an airway. > > Both kids are runners. I assume any and all sports scholarships have just > become impossible? They are not going to be happy since they have done > both > Cross Country and Track since Junior High. > > Sorry to bring this up here but I know many of us have both TC and Chiari > and that list is overfull. > > M > > > Quote Link to comment Share on other sites More sharing options...
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