When Chiari Keeps a Comin

I was diagnosed 5 years ago, we thought I had a brain tumor and I kept most of my issues to my self but it's hard to do that when your sleeping on the couch, in pain 24/7 and you start to have symptoms that your family notices. I was sent to a MRI ASAP finally after so many people, family and doctors saying there was nothing wrong and I was in it for the drama. LOL yep totally want head pain that drops me for "drama sake! The night of my MRI I got the results and like almost all Chiari stories they had never heard of it but I was told on a Friday so I had time to get right on the web and scare my self to death. That was in Feb and my surgery was in Aug, of 09. All the NS's agreed I was born with Arnold Chiari Malformation and should of had surgery when I was a child. I went to Las Vegas Dc,M Sieff and he removed my tonsils, and the normal Chiari surgery. My recovery was very hard and still is. Yes I am still recovering, because my brain stem and Vegas Nerve was so damaged it not only effected my them and the signals to my body but other parts of my body.
This is the time I remind all that we are all different and not one Chiari is the same because not one body is the same nor the brain.

With in 4 months of my surgery I was having A Typical Seizures and although they look like full blown seizures they say they are not Epileptic. I was diagnosed with a Brain aneurism I think 9 months later and with me  I get the things they can't help! LOL

When I was told I cry'd then started laughing because in my mind it made since. The question on why I had ACM loomed over me like a storm that would never stop raining and although I know why I was so scared to come out and say it. I many more illness's and I roll with because two years ago as we were thinking our son had Chiari our daughter went down with "all" the symptom's and she went down fast. She Has Chiari 0 and had the same surgery I had but at UCD with Dc, R Schrott. As she was healing and having seizures the same as me our son stared to go down also, he was diagnosed about 6 moths after our daughters surgery. My daughter and I have A Typical seizures and EDS along with other illness, my son has Chiari 1 with Epilepsy called JME.  As we await his surgery it keeps being pushed off because now his blood is not clotting.   Our daughter is almost 17 yrs old and our son is 10 yrs olds.

With all this going on and much more we wanted a new start so we moved to the mountains in a great small community where we are not the family that got sick, we are just us. We are less stressed and now see how close we are to each other and how we need to be. My family has Chiari because my father was in Vietnam and was exposed to Agent Orange. We are doing DNA testing but our doctors believe this also and my bio-father is suffering from nerve issues.

I got the Why we have it and it does not help, the only thing that helps us is to be strong, take one day at a time and enjoy the days we feel good. There is a misunderstanding that when we get the surgery we are fine. I hope to God you all are but in our case and others we are not. We are still fighting with other illness related to ACM, it may be a brain disease but it effects out nerves. And even more important Brain surgery is a trauma to the brain and it takes time not only for your brain but your body and your sprit, soul and self to find the person that has been stuffed inside for years not able to come out because of the blockage.

I'm not a doctor I'm a Zipperhead a Chiarian a mother to two children with Chiari and we live eat and breath Chiari. Some of this may apply to your self or loved one and some of it may not but in my life it's what we live.  Chiari can keep comin and you don't know when it will stop so enjoy each moment of love, happiness, laughter, smile, kiss, hug or what ever worms your heart because that is what keeps us all fighting is love.

I send all my love and support to you all
Heather Founder of Zipperheads for Chiari

Note: Anything that is posted is from my own person life and there is no medical staff on this site, we are a support group that wants to send love and support to all that is ill and let you all know your never alone.