I know there is some debate about Chiari being hereditary or not, but I was curious how many others have multiple family members that have it. My 7 year old daughter was diagnosed last month. We had an mri done on our 6 year old daughter last week since she often gets headaches and nausea, and she was diagnosed with Chiari 1.5. We are working on getting an appointment for an mri for our 11 year old daughter since she too has some of the symptoms.
Jcks, so sorry you are getting this news. You are a super mom and taking excellent care of your girls. I have a sister who is diagnosed Chiari and EDS and an aunt. My other sister has not had an MRI but she has EDS too.
Jenn
It hasn't been recognized in my family, but I personally am 100% certain that my maternal grandfather had Chiari. He passed away in the 40's. He was diagnosed with a "brain tumor" from his symptoms. He was a lineman and would complain of climbing to the top of the ladder and having sharp stabbing headaches. He even collapsed several times. His "brain tumor" never progressed. He was sitting under a tree drinking coffee one morning and just died. He was 32. I am without a doubt that he unknowingly had Chiari and diagnosed with a brain tumor instead. Testing wasn't nearly what it is now. Not sure if this is ANY help. I've encouraged my brother and mother to have an MRI. My brother is uninsured and mother disabled now. Not sure if this is any help for you though. But it's great that you are a proactive momma-bear and are getting them tested and everything under control now!!! You definitely should get an award! :D
There are several Genetic studies in progress, one at duke U.
I have said in one of my replies before that my adult son and daughter have a connective tissue disorder,and even that they know I have Chiari as well,they are reluctant to be tested for CM .My two grandchildren to my daughter show many signs of CM but my daughter will not have them tested. I think for the fear of adding more medical problems to their lives.I have told them how important it is to know if they have this problem so it can be managed early,but like many doctors here in Australia my own family is not aware of the damage that Chiari can have on an individual and their families.I am sure there is a link to having a connective tissue problem and that the probability of CM being present,because many people report the incidence of having both disorders.I have just spent a week in hospital for problems with both disorders , but the doctors knew very little about Chiari ,even though they could see what it was doing to my body and the effects on my brain ,that caused many cognitive problems and anxiety issues.When I think of my father`s life and his medical problems,I now think he fits the perfect candidate for connective tissue and Chiari.In that period following World War Two ,his problems definitely had no known treatment,and even if if they were aware of the type of problems he had then they would just put it down to war related illness.He died at the age of 52 from undetermined heart problems.I hope this can help with your research.
I have quit a few family members with chiari aside from my self (and these are all on my fathers mothers side of the family) I have my fathers sister (47) and her youngest daughter(16) and there's my second cousin he's 12. Medical records indicate that my great great grand mother died form chiari like symptoms and her first child was born with a large "lump" at the back of its head and died at 3 weeks old my aunts chiari dr looked over the medical records she found and we think it was chiari 3 or 4. I also am heartbroken to say that knowing the signs and symptoms of chiari it is more likely than not that my 6 year old son will also bare this burden
I’m the only one in my family as far as I can tell. I’ve talked to as many relatives as I can about the symptoms and I’m the only one with the symptoms as far back as anyone can remember… on either side of my parents lineage.
I'm the only one in my family as well. I have a sister that gets migraines, but I think they are really migraines, they are nothing like what I have. Although, I have another sister who has weird symptoms that they can't figure out what it is that I keep telling she needs to tell them to do an MRI and see if maybe she had it. But as of now, no one else anywhere in my family has had it.