First, thank you for providing such a great site! I have been glued to my computer since I found it 4 hours ago.
I have been spending a lot of time doing online research since I first heard about Chiari Malformation in December. I had a lot of the symptoms. In January I had an MRI, and in February was diagnosed. So, in my four months of research, I have developed a couple of theories, and a couple thousand questions.
Here's what I understand, and correct me please if I am wrong....
For many, the Chiari Malformation Type I is due to a small posterior fossa, not enough room in your skull for your brain.
Small Posterior Fossa is described as a neural tube defect.
Neural tube defects have been linked to a shortage of B-vitamins in the mother.
B-vitamin deficiencies can be for a multitude of reasons, but some of them are gluten allergies, pernicious anemia, multiple sclerosis, lack of intrinsic factor in the stomach, and being a vegetarian (many but not all vegetarians have a hard time getting enough vitamin B).
I have read multiple times of Chiarians being B & D-vitamin deficient.
My top 5 questions to all of you would be:
1. Do you have reason to think your biological mother was vitamin B deficient during her pregnancy with you?
2. Is there a family history on either of her (your mother's) parents sides of gluten allergy, pernicious anemia, MS, lack of intrinsic factor, or vitamin B deficiency?
3. Was your mother, or her parents, vegetarian?
4. Do you think your mother ate fresh fruits and vegetables during pregnancy, or if her mother did? My mother & grandmother loved sweets, baked goods, bread, chocolate, mayonnaise....so maybe not the most nutritious diet (but who knew differently then?).
5. Do you, as many others do, have someone in your family who has EDS (Ehlers-Danlos Syndrome) or Hypermobility Syndrome? I have an aunt and several cousins who have no problems putting their palms on the floor while keeping their legs perfectly straight, along with other amazing feats of flexibility.
Quick history on my family: no, we do not belong to the circus ;)
My mother has MS (almost all people with MS are B-12 deficient), diagnosed about 1 year after my birth. She had migraines, fatigue, easily bruised, pale skin, dark circles under eyes as long as she could remember. I am confident she had a B-vitamin deficiency from an early age, although she was never tested. Her mother had peripheral neuropathy. I have a suspicion she might have had Chiari, but I have not been able to access the MRI they performed shortly before she passed away. My maternal grandfather said he had a headache his whole life because of a "bone in his brain", but no one knows how that was diagnosed (my grandmother & grandfather are both deceased). His parents were mainly vegetarian, and his sister (maternal great-aunt) was very similar to my mother, low energy, pale skin. My sister had scoliosis, and B-vitamin deficiency which required a hospital ER visit when she was 10. Both of my siblings, along with myself, have dark circles under our eyes, migraines, and sleep apnea.
So my theory would be: Chiari could be caused by B-vitamin deficiency in the mother during pregnancy. Mother could be B-vitamin deficient due to multiple reasons, and this could be genetic (celiac, lack of intrinsic factor, etc), and passed to her from one or both of her parents. This could explain why Chiari can run in families, as other people in the family would be vitamin B deficient as well, and in the case of genetic vitamin B deficiency, even while supplementing with B-vitamins, the body may not process them very well. I think it would be interesting to see if the EDS gene and the Celiac gene were found in Chiarians.
To finish, these are my thoughts on hours of research conducted online only. I try to take my information only from reputable medical sources (research and educational publications), but this is my opinion only. I feel that many of us have ideas on what causes this, and we are the only ones who know what our family history holds. So I am curious if any of you have a similar family history?