Hello everyone,
First let me say that my son Steven went for his follow up MRI from his surgery last Sept. I am no radiologist but just looking at it...wow..what a difference, it looks great! He has his follow up appt. with his NS on the 18th of this month. I am happy to say he is doing great. he has not had one Chiari headache or symptoms since. Yah, he has had a couple headaches when he got sick with a sinus infection and with the flum but other than that NO headaches.. YAAY!! Steven does still have anxiety and it is being treated but it runs wild on my side of the family so I am not going to blame the Chiari for it, just the luck of hereditary...
That leads me to my question... until my son was diagnosed with CM just over a year ago I had never heard of it. Well we were all forced to learn and now know almost too much...LOL
My niece has had a headache straight for almost 2 months now and my sister has taken her to a NL and they tried many types of meds and they helped but the headache never really went away. Well I pushed my sister for her to get an MRI and Wha La...again I am no Dr. but I looked at the MRI and it is plain as day the tonsil herniation. My sister has friends in the medical field and they also agree it is pretty obvious. She has a follow up appt. with the NL in a couple weeks, where I am sure he will confirm our suspicions. She is about the same age as my son when he was diagnosed.
Sooo, does Chiari run in families...? is it hereditary.? As I mentioned no one in my mother/fathers family has ever had it that I am aware of. So I am amazed that both my son and my sisters daughter have it. Also what are the chances their kids will have it? My sons first words when I told him about his cousin were..."OMG, I don't want to give this to my kids". Of course I played it down and said no I doubt it.. He is turning 19 in a few months and I don't need him to be stressed over this right now.
So how many of you have more than 1 person in your family with Chiari?
thanks!
Charlene
I'm new to all of this. My surgery is Monday morning. I don't know of anyone else in my family who has it, but now that we are all aware of it, we'll know the signs when we see it.
I know they are doing research, but no conclusions have been made official. I tend to think it is, but some people go their whole lives without any symptoms at all, so no one knows they have it, so it's hard to know.
Charlene,
I found this article from respected doctors that was published in a good journal. It is a couple of years old, but there are not many studies of its kind, as far as I know.
A genetic hypothesis for Chiari I malformation with or without syringomyelia.
Abstract
In several reports the authors have suggested occasional familial aggregation of syringomyelia and/or Chiari 1 malformation (CM1). Familial aggregation is one characteristic of traits that have an underlying genetic basis. The authors provide evidence for familial aggregation of CM1 and syringomyelia (CM1/S) in a large series of families, establishing that there may be a genetic component to CM1/S in at least a subset of families. The authors observed no cases of isolated familial syringomyelia in their family studies, suggesting that familial syringomyelia is more accurately classified as familial CM1 with associated syringomyelia. These data, together with the cosegregation of the trait with known genetic syndromes, support the authors' hypothesis of a genetic basis for some CM1/S cases.
Charsay, I’m so glad Steven is doing so well. One of my sisters has confirmed Chiari, her daughter has probable tethered cord, and I have an aunt with confirmed Chiari. All my sisters and several cousins have EDS.
Jenn
Thanks everyone, Great reading.
I am going in for my surgery on th17th of this month. I have a sister and a grandmother who both have been confirmed with Chiari. I suspect my mom has it but she has too much anxiety to have an MRI. Every time they try she makes them stop a few minutes in. The strange part is my grandmother who has it is on my dads side. My mother's mom died when my mother was young but she had many signs now that we know what it is. It makes my sister and I wonder if thats why we both have it because both sides of the family carry the gene.