The reason I ask is that my sister and I both have chiari. just wondering if anyone else does and how different are your symptoms. We are seeing different dr's and being treated differently. Her's is more sever than mine and she cant take the meds that I can. Just curious of how your families handle it and is one of you treated differently?
hi..
my sister had an mri a few yrs ago...she suffers awful migraines....no chiari was seen. have heard of siblings both having it though.
hi lori
I had my mri after my sister did, because i have had sever headaches since i was 16 and im now 39. It seems to be really rare so we are told. Had my son who is 16 checked because of his headaches and his was clear. Thank god.
i had my daughter checked too..she is 13 and gets h/a's...like your son..hers was clear too..thank god.
how are you doing these days/
Mandy, no my parents had none of these things. My sister has had the flow study and she is really bad and will be having surgery in the next few months after she gets over the back surgery she had wednesday for disk problems. We have never thought of doing the studies because im a single mom and she has a big family with several young children in it. Time is something we dont have alot of. I wish there were studies here where we live but her dr seems really interested in keeping up with both of us as I see a different NS then she does. Ty for the info. We have wondered now maybe our father could have had chiari because of this headaches, but he died of cancer several yrs ago before we knew of the chiari. Hope everyone is having a good day.
Mandy said:
Hi Monica,
My sister hasn't been diagnosed, still trying to find where her old MRIs are so we can take a look to see if there is anything there, she has similar symptoms to myself. Have you seen the Duke Genetics study for Chiari Malformation in families? Here's a link, pretty interesting reading.
http://www.chg.duke.edu/diseases/pdfs/Chiari_Newsletter_2012.pdf
If you and your sister were interested, they are currently looking for people with 2 or more affected family members for their study, here is the link for that:
http://www.chg.duke.edu/diseases/chiari.html
Personally, my mother was diagnosed with MS about a year after I was born, and knowing that all MS patients are deficient in B vitamins, and that she was not taking prenatals, it's not surprising I have a neural tube defect. Was/is your mother healthy? Did she have more than two children close together? Are you familiar with the other diseases that can be associated with CM? Abby started a great discussion "Medical Zebras" detailing symptoms of the associated diseases/disorders.
Have you and your sister both had the CINE done? If so, does she have more of a blockage than you do (which would correlate in some cases with more severe symptoms)?
Was your father a Vietnam vet? Children of soldiers exposed to Agent Orange have a higher probability of congenital Chiari Malformation. TracyZ has more information on that, her father was exposed.
I hope you and your sister get relief, this is a great website, with a ton of educated and empathetic people :)
Take care,
Mandy