We found out in 2011 that our oldest son has Chiari. September of this year he had his decompression at the age of 4.5. Then in October we found out our 8 year old & 2.5 year old daughters have it as well. We’ll today I met with my new neurosurgeon to discuss my mri I had done in October that my neurologist has still yet to let me know results of. After reviewing them & going over symptoms I found out I have it as well. What are the chances of me & 3 out of my 4 children having this? Now we just need to wait for our 6 month old to get a bit older to be screened.
Some people argue that chiari is genetic… however I’m the first one in my family on either side diagnosed with chiari… none of my siblings, cousins, parents, aunts, uncles, grandparents etc have even had symptoms remotely close to chiari symptoms… so I don’t know if it’s genetics or what. I’m sorry that your family is going through this.
I talked to my Dr & he said that the genetic link is very under researched due to b the only way of finding out is if every family member underwent an mri after a single individual received a diagnosis. This is unlikely to ever happen so therefore hard to make that link. We could only track it from this point down not up.
Mom, you must be so stressed out- I’m sorry. Are you dealing with pain along with taking care your little ones? There are some studies going on to make the possible genetic link. I have an aunt and sister with Chiari. I have two sisters, my dad, and at least one cousin with EDS.
I’ve been dealing with tons of pain & symptoms for years. I’ve been told it’s everything from sinus headaches, arthritis, migraines, & that I was attention seeking. They gave me a prescription for a home cervical traction device but I’m having a heck of a time finding a medical supply company who carries them or is even willing to order one. So for now I sit & tough it out till my next appointment in December.