My grandson has a chairi there is a family history but the docters say no. Any thoughts do we need more research into this condition?
Many diseases and health conditions are genetic. I believe the National Institute of Health along with Duke University is currently conducting studies on whether or not Chiari has a genetic component. Perhaps other members of this forum can chime in if they know of any conclusive evidence that Chiari is genetic. (My daughter had decompression surgery for Chiari when she was 15, and my mother was diagnosed with Chiari when she was 55, so I have a special interest in what the studies will show.)
Joalexa said:
Many diseases and health conditions are genetic. I believe the National Institute of Health along with Duke University is currently conducting studies on whether or not Chiari has a genetic component. Perhaps other members of this forum can chime in if they know of any conclusive evidence that Chiari is genetic. (My daughter had decompression surgery for Chiari when she was 15, and my mother was diagnosed with Chiari when she was 55, so I have a special interest in what the studies will show.)
I know beyond a shadow of doubt not all Chiari is genetic. I know it runs in some families & this research will be very important for them. Mine was caused by a congenital birth defect from 2nd generation Agent Orange (Dioxin) contamination. I know others like me. Over 80% of this forums Members do not have family Members with Chiari. The research is only being done on Chiarians that have family Members with CM. Where does that leave the rest of us? I believe it can run in some families. The bigger picture though doesn't have genetic links. I have talked with many Specialists and they all agreed.
I guess we will find out someday for sure if it is genetic or not. In our family my daughter has Chiari and so do I. I assume (because of the symptoms) my Mother had it too, but she was never tested for it. My daughter and I are enrolled in the Duke University studies, which will hopefully give future generations some good answers. I am going to have surgery in 2 weeks( way to start the new year). Luckely at this point my daughter is relatively symptom free.
http://www.conquerchiari.org/education/chiari-faqs.html
Per ConquerChiari.org
10. Does Chiari run in families?
An ongoing study at Duke University has identified more than 100 families where two or more members are affected by Chiari. This implies that for some cases there is a genetic basis for Chiari. It is not known, however, what percent of cases may have a genetic component. In other words, this does not mean that the family of everyone with Chiari is carrying a Chiari gene.
I suspect my mom has it from the symptoms (started after a major car accident) she describes... same as many of mine only some of her's are WORSE than me, but her MRI's have always been good.
Then again, I remember a video clip I watched from Discovery Health about a girl who's Chiari could not be diagnosed by MRI, but she was so bad off she was confined to a wheelchair.
Every time one of my kids complains about a headache.... I worry they'll end up down the same path as me.
When I was starting to have really bad Chiari symptoms I told my mom that I had this pain up the back of my head. Her response to me was..."Oh, yeah, that is just your pinched nerve. I have that and your grandmother had it too." So I went into my family doctor and told her that I had a pinched nerve in my neck that was giving me pain. She ordered up a MRI and that started my journey into the world of Chiari. That information makes me pretty sure that it could be genetic in my family. More research is needed! Every time my kids tell me they have a headache I get a sick feeling and want to get them a MRI asap!
My mother had it so I am assuming some cases are genetic.
I am a member of quite a few Chiari support groups and pages. I read too many stories of multiple family members who have Chiari. Coincidence? I think there is more to it. Not all family members may have symptoms, so not diagnosed, but have it. More genetic research is needed!