I just saw a mom and both of her kids have chiari. Is this genetic? Should I have both of my children checked? I don't want them to go through all that we are :(
I have seem several Members that has had family members that also have CM. I was terrified that my daughter would have to go through what we have also. She was checked during treatment for another injury & was negative for Chiari. Her PCP & Rheumatologist both advised me not to have her checked unless she started to have symptoms. I know their recommendation was medically sound, but as a Chiarian Mother it was very hard to live with. Some Dr's say it is Genetic. My NS who has literally done 100"s of studies for the NIH & developed most of the current Neurosurgical techniques says it is not genetic. So I guess there are differing theories. I know insurance companies won't pay for diagnostics with a diagnosis of family history. Maybe you could talk to your children's dr and see what they say.
Thanks for great info TracyZ-who is your neurosurgeon?
TracyZ said:
I have seem several Members that has had family members that also have CM. I was terrified that my daughter would have to go through what we have also. She was checked during treatment for another injury & was negative for Chiari. Her PCP & Rheumatologist both advised me not to have her checked unless she started to have symptoms. I know their recommendation was medically sound, but as a Chiarian Mother it was very hard to live with. Some Dr's say it is Genetic. My NS who has literally done 100"s of studies for the NIH & developed most of the current Neurosurgical techniques says it is not genetic. So I guess there are differing theories. I know insurance companies won't pay for diagnostics with a diagnosis of family history. Maybe you could talk to your children's dr and see what they say.
I worry about that too. Both my kids get headaches alot but so far the doctors don't want to check. I also know my kids think about it. My daughter did a power point for biology class on Chiari and she asked me about the possibility of her having it. Some doctors say there is a genetic link others don't. I continue to worry. : )
I saw a NS in Houston yesterday, Dr. Fletcher, he is my son's NS, he has been researching Chiari's for years and I asked him the same question yesterday. He said it is definetly hereditary, they just haven't been able to pin down the gene responsible for it yet. I do know doctors have differing opinions on this, but me and my son both have it, and so many other families tend to have more than one person in the family with it, so I tend to think it is. I have been advised also to not have any tests done on my other children unless they start showing symptoms.
Dr. Peter Jannetta in Pittsburgh.
Vonda Gardner said:
Thanks for great info TracyZ-who is your neurosurgeon?
TracyZ said:I have seem several Members that has had family members that also have CM. I was terrified that my daughter would have to go through what we have also. She was checked during treatment for another injury & was negative for Chiari. Her PCP & Rheumatologist both advised me not to have her checked unless she started to have symptoms. I know their recommendation was medically sound, but as a Chiarian Mother it was very hard to live with. Some Dr's say it is Genetic. My NS who has literally done 100"s of studies for the NIH & developed most of the current Neurosurgical techniques says it is not genetic. So I guess there are differing theories. I know insurance companies won't pay for diagnostics with a diagnosis of family history. Maybe you could talk to your children's dr and see what they say.
I wonder if the differing opinions are due to different interpretations? Like maybe there is not actually a genetic link in our genes, but maybe there is a hereditary factor involved, such as the way our skull is shaped? Like it's passed down from generation to generation, such as broad shoulders or wide hips tend to be???
hhmmm i am adding this to my list for mayo
Please let us know what you find out Big Red.
I myself have cm1 and had decompression in oct 2011. My daughter 28years old has had decompression and has sf shunt and hydrocephalus shunt, and her twin brother has been having problems but he is military and must fight basically like we all have for a proper diagnosis. Wish you luck
Foxrufus i totally understand that one. If he needs an idea concerning how to deal with that problem let me know. I'm prior service and now help Veterans with benefits so know how to deal with that problem
He is active army fort Campbell Kentucky he told me today that they are now giving him refferal scans and MRI is getting ordered thank you
Good to hear. If he has issues feel free to let me know