What an awesome thing that you & your family are doing for research!!! I haven't had anyone in my family get tested since they aren't really symptomatic of Chiari. However, my husband & myself have it which is obviously rare & I know that has nothing what so ever to do with genetics.....lol!!! We could not have children for some reason, but obviously God knew what he was doing in that department because I didn't find out about my Chiari until I was 41. Would love to know how the study goes for y'all.......good luck!!!
I am 51, found out a year ago. My PCP didn't know what it was, but I did because my sister has it. She had surgery 15 years ago n her 20,s. So it's hard to compare the two. They caught hers right away and at that time I'd surgery ASAP. She has not really had any issues so we do not share stories. I've yet to decide if I am going to have surgery. Have csf leak and that has been my struggle with drainage lately from eyes, nose and ears along with the multiple symptoms we all have with chiari. The dr told my sister it was due to the fact that when my mom was pregnant she had a magnesium deficiency. My brother has MS, but I often wonder if he has chiari.
Hi and welcome to the Chiari forum.
Yes, we have had members that have been part of clinical studies....they have not come back to tell us how things went.....I am sure if you use the "search this community" feature you can locate the older threads on this topic.
I also am very happy to hear that your family will be doing this, as it will help to get to the how we all tend to get it and hopefully help figure out a way to avoid it....
@ Lynnrae64 I never heard of the low magnesium issue and Chiari.....so that is interesting.
Actually I was mistaken, it was folic acid deficiency.
Ok...that makes more sense as I have heard that can cause Spina bifida which is related.....thanks for the correction.
Brain fog....one of my many symptoms. I get things mixed up or forget words.
Unfortunately we all have that...lol...no worries...this is why if I do not remember I ask.....cuz I do the same things....