Familial Chiaris

[Redheadsmommy]

I have not been on here for many years- it has taken me about 5 yrs to finally get the doctors to listen to my symptoms and cervical MRI but am going for surgery in June. My question is - has anyone else on this forum had a family member also diagnosed with Chiari 1. As soon as I received positive confirmation of the Chiari I had been saying I have for 5 yrs- I immediately called my younger sister who has been suffering from symptoms for 20 yrs and told her to see her doctor and get an MRI done. Well, lo and behold she has almost the same exact herniation as me. trying to get into the NIH study now. Anyone else have similar experiences!

[selmaS]

  Hi and welcome back !

Yes, we do have several families w/ multiple members with Chiari and related conditions...

I feel I have several family members with similar symptoms, but some were given a DX of fibro and they do not feel the need to look further....it is hard to explain that dx could be wrong....so until a new symptom crops up that does not fit under the fibro umbrella I have to wait and let them think they have a proper dx...and they may well have...but it is too coincidental.

[Redheadsmommy]

I feel like I want my other family members to have the opportunity to know especially my children. I think it is better to know than have to struggle for so many years like most of us have in order to get a proper diagnosis. I will consider it  a huge blessing if the never have a symptom but I still think that knowledge is power. I also have ADHD and two ladies wrote a book about being diagnosed with ADD/ADHD as adults with the title "You Mean I am Not Lazy, Stupid or Crazy". Thats how I felt about finally getting my Chiari diagnosed- I would get so frustrated when I would be made to feel like a hypochondriac when I would go to the doctor about my symptoms. I knew I wasnt one- I take care of my children everyday and I go to work everyday. Just feel like  I want my other family members the relief I felt- that is why I pushed my sister to get checked because her problems have kept her from working like she needs to lus she is a single mom.

[irislita]

It is possible chiari runs in familys.i read about a family where the mother and all of her 3children had chiari and other cases.i am so sorry u and ur sister do have it.i am so glad my twin sister doesnt have it...it would freak me out knowing that anyone of my family has to go thru this.