Guest guest Posted January 23, 2006 Report Posted January 23, 2006 Dear Kim, I'm trying not to project 's situation onto anyone else, even if they have chiari dx. It is true that for people who have had a progression of symptoms, the majority of them have an alleviation of those symptoms after surgery. Many, many doctors would agree with your decision to not have surgery, as his symptoms are manageable, and do not compromise the quality of his life. As you will be at Shriners prior to the implant procedure, I would ask them to write up precautions for the surgical team, just so they don't unwittingly put him in a compromising physical position, ie; Neck flexion can aggrevate the symptoms. I've also heard it recommended that kids avoid contact sports such as football, hockey, anything that could forcefully compress or extend the neck. And that they avoid tumbling, and such., and also to avoid lumbar puncture, as that alters CSF pressure. Other than that, growth spurts can trigger the onset of more; or more aggravated, symptoms. which is the only answer I've been given as to why kids who have had undiagnosed, uneventful, chiari for years, begin to show symptoms around the age of 20. So, from what I know, and just from a mom's point of view, I agree with Ur decision of no surgery. is presenting differently, and with additional findings, that makes it different for her. I've wanted to have a chance to run those few precautions by U, so I I feel better now. As always, thanks for your attention and concern, and U keep us posted as well! Peace, Quote
Guest guest Posted January 23, 2006 Report Posted January 23, 2006 Thanks for making me feel more at ease...and you are right with what is presented at the time but I will keep in eye out for any changes as he gets older for sure! And we always make sure about the Neck Flexion and my son tells me all the time (because he is a great repeater) he signs me no football and then points to the neck. So he is aware of his limitations which seems to impress the school folks a whole lot because he will stop in an activity say in gym and say I cannot do that. Thank God he is not a rebel (at least not yet!) Thanks again and I wish you the best. Kim/Michigan Re: Kim/Mich. - scoliosis Dear Kim, I'm trying not to project 's situation onto anyone else, even if they have chiari dx. It is true that for people who have had a progression of symptoms, the majority of them have an alleviation of those symptoms after surgery. Many, many doctors would agree with your decision to not have surgery, as his symptoms are manageable, and do not compromise the quality of his life. As you will be at Shriners prior to the implant procedure, I would ask them to write up precautions for the surgical team, just so they don't unwittingly put him in a compromising physical position, ie; Neck flexion can aggrevate the symptoms. I've also heard it recommended that kids avoid contact sports such as football, hockey, anything that could forcefully compress or extend the neck. And that they avoid tumbling, and such., and also to avoid lumbar puncture, as that alters CSF pressure. Other than that, growth spurts can trigger the onset of more; or more aggravated, symptoms. which is the only answer I've been given as to why kids who have had undiagnosed, uneventful, chiari for years, begin to show symptoms around the age of 20. So, from what I know, and just from a mom's point of view, I agree with Ur decision of no surgery. is presenting differently, and with additional findings, that makes it different for her. I've wanted to have a chance to run those few precautions by U, so I I feel better now. As always, thanks for your attention and concern, and U keep us posted as well! Peace, Quote
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