Aa
Aa
A
A
A
Close
Avatar universal

Chiari Studies

Hello Chiari world!

I was diagnosed with Chiari in May. Now two of my cousins, my mom and brother have all be diagnosed with it as well. We are joining a genetics study and are curious if any of you others out there have joined any studies. We would like to know what the Pro's and Con's were/are. We feel that since so many of us have been diagnosed in the last three months that our family may be able to help future families and our future generations by joining the study. We also would like to hear how many of you out there have whole families, like us, who are affected by this Malformation.

Thanks for any information!

- B
7 Responses
Sort by: Helpful Oldest Newest
12573102 tn?1431701617
What an awesome thing that you & your family are doing for research!!!  I haven't had anyone in my family get tested since they aren't really symptomatic of Chiari.  However, my husband & myself have it which is obviously rare & I know that has nothing what so ever to do with genetics.....lol!!!  We could not have children for some reason, but obviously God knew what he was doing in that department because I didn't find out about my Chiari until I was 41.   Would love to know how the study goes for y'all.......good luck!!!
Helpful - 0
Avatar universal
I am 51, found out a year ago. My PCP didn't know what it was, but I did because my sister has it. She had surgery 15 years ago n her 20,s. So it's hard to compare the two. They caught hers right away and at that time I'd surgery ASAP. She has not really had any issues so we do not share stories. I've yet to decide if I am going to have surgery. Have csf leak and that has been my struggle with drainage lately from eyes, nose and ears along with the multiple symptoms we all have with chiari. The dr told my sister it was due to the fact that when my mom was pregnant she had a magnesium deficiency. My brother has MS, but I often wonder if he has chiari.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Yes, we have had members that have been part of clinical studies....they have not come back to tell us how things went.....I am sure if you use the "search this community" feature you can locate the older threads on this topic.

I also am very happy to hear that your family will be doing this, as it will help to get to the how we all tend to get it and hopefully help figure out a way to avoid it....

@ Lynnrae64 I never heard of the low magnesium issue and Chiari.....so that is interesting.
Helpful - 0
Avatar universal
Actually I was mistaken, it was folic acid deficiency.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Ok...that makes more sense as I have heard that can cause Spina bifida which is related.....thanks for the correction.
Helpful - 0
Avatar universal
Brain fog....one of my many symptoms. I get things mixed up or forget words.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Unfortunately we all have that...lol...no worries...this is why if I do not remember I ask.....cuz I  do the same things....
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease