CHIARI IS GENETIC, WHAT SHOULD FAMILY DO

[Eddie03]

I just found out that I and my mother have CHiari.  I have two children 6 months and 3 yrs old.  Should I have them tested?  What about the rest of the family?

[jyojlynn]

I believe that my father had Chiari also.  He suffered from horrible headaches and i am sure many other symptoms that as a kid I just didn't notice.  I know that he was in pain a lot, and unfortunatley this caused him to become quite violent. Now my oldest daughter has many of the same symptoms that i suffered from in my early days - headaches, cold hand & feet etc. I would like her to be checked but she isn't speaking to me right now.  Maybe after Monday - if I have a diagnosis of course - I can speak to her about it.  Then she won't think "it's all in my head" - but then it is - isn't it!!  

Joy

[selmaS]

there was a  dr that presented info on genetics at the ASAP conference this past July...I believe there is a link to the info on their site.
the drs name is Joan E. Bailey PhD.
this was a question that came up many times at the conference....there is research going on, but I don't believe there was a conclusion.

[Shane99]

I've had some concerns about this myself. My wife and I want kids (I have a teenage stepson, but we're talking genetics here :) ), but we're concerned about the possibility of Chiari.

I've read that the statistics are around a 14% chance (I don't remember where I read that, so I won't swear to it, but it stuck). 14% isn't a huge percentage, but it's awfully large to take that sort of risk - at least it seems to be to me.

I've told my siblings that they should be tested, as all three of them have symptoms that COULD be related, but then again, they may not be.

As far as advice goes; inform you Pediatrician and your PCP - and you may need to take in some Chiari literature for them to read. A lot(!!) of PCP's and pediatricians are simply not even aware that Chiari exists. Listen to what they say and it wouldn't hurt to get a second opinion just to be on the safe side.

What is the state of you and your mother's conditions? Are either of you going to require surgery?

You should inform as many people on your mother's side of the family as you can. It might be scary to them, but I think it's good to know as early as you can and any of them could have it.

[redkim]

I asked my NS this and he said it's not genetic as in there is no gene assocaited with it, but it is/can be hereditary.  I have a twin so I wondered about him.  The doc said if he doesn't have any problems then he doesn't need to worry about it...like selma, I know what to look for and I told my mom to watch for issues.

[selmaS]

I am in the same boat....I have it, so should I have my daughter checked?.....I am aware of chiari symptoms, so if and when she should show signs of having ne, then I will have her checked.
My cousin was born with spina bifida, so I concluded that was my family link.

I realize u and ur mom having it , is impressive, but it doesn't mean ur children will also have it as well.Inform ur childrens pediatrician as to ur condition and take info from the net...or our health pages here on this forum..(pages to the right of screen, scroll down)
ask some of the others here and do what u feel comfortable with.....I am not a medical pro...I am just like u...searching  for answers.

Godspeed
"selma"