I was diagnosed of CM on May 9 of this year. It has takin' me awhile to absorb and accept my diagnosis. I am both relieved and devastated... My symptoms have rapidly increased in severity and have experienced black outs...I don't think I actually pass out completely but I go from an upright position to the floor with no recollection as to the moments in between. I am blessed to have my 15yr old son I can call on for help but it scares him...he told the er dr that when he found me that my head was "bobbing" and my hand and arms were folding up to my chest. I have yet to read anything that would connect this to the Chiari...any advice?
Hi!(: My name is Macie and I know what you're talking about. I'm so sorry you and your son are going through this. I'm 15yrs old and have had those 'black outs' for a couple years now. Although they happen a lot less frequently since my surgeries, they still do happen. I know exactly how you feel. They're extremely frightening, not only for you but for others are involved in witnessing the incident. I commend your son for being so brave. My grown father drops to the floor in hysterics when it happens to me. I can assure you, there is no doubt that it is connected to Chiari. Matter of fact, my NS and Nero both say it is a red flag symptom for Chiari.
Also, I understand how relieved and devastated you must be feeling. The mixed up emotions can be quite overwhelming at times. It took a while for it to settle in for me too. Even though I was diagnosed in 2009, I hadn't found a doctor that explained to me it was the Chiari causing my problems until the end of 2011. It's hard finding out the cause of your symptoms are coming from the most important part of your body, the brain. And the fact that there is no cure. At times, I still find it hard to deal with. I always used to ask the questions 'why me?' or 'what did I do to deserve this?'; even after my surgeries. My mom would always turn it into something positive by responding, 'Because you can do this, you're strong.' She would also put me up on a pedestal and say that I was a hero, to her and my sister. She would tell me, and still does tell me, that I basically saved their lives. I'm not sure if you know this or not but Chiari is genetic. So at this moment, you are a hero as well. Maybe you are laying down the ground work for future family members, or even present family members, just as I did. Not trying to scare you, with the genetic factor, just thought you'd might like to know. Once I embraced it, it made me stronger. I now realize I can take my pain and suffering from Chiari and do good with it by helping others learn more about the condition. The most important thing to remember , is to never lose hope and always follow your gut instinct.
I know I'm young, but I've learned a lot in the past few years battling Chiari. If you ever have any questions about Chiari, I could tell you a lot about it and it's related conditions. I see that your son is my age, and if he ever needs someone to talk to or vent to, you can find my email on www.screwedontight.com; a website I started for awareness. I hope I helped a little, and I hope you find the answers you deserve.
Take care,
Macie.(:
thank you!(:
Emmaline said:
That's awesome Macie!
Macie, Ty so much! You are wise beyond your years. I knew that it is congenital but was told it was not hereditary...Will be getting Gavin tested soon, just need time to absorb and educate myself so I can be better support to him if needed. Again, TYfriend
ScrewedOnTight said:
Hi!(: My name is Macie and I know what you're talking about. I'm so sorry you and your son are going through this. I'm 15yrs old and have had those 'black outs' for a couple years now. Although they happen a lot less frequently since my surgeries, they still do happen. I know exactly how you feel. They're extremely frightening, not only for you but for others are involved in witnessing the incident. I commend your son for being so brave. My grown father drops to the floor in hysterics when it happens to me. I can assure you, there is no doubt that it is connected to Chiari. Matter of fact, my NS and Nero both say it is a red flag symptom for Chiari.
Also, I understand how relieved and devastated you must be feeling. The mixed up emotions can be quite overwhelming at times. It took a while for it to settle in for me too. Even though I was diagnosed in 2009, I hadn't found a doctor that explained to me it was the Chiari causing my problems until the end of 2011. It's hard finding out the cause of your symptoms are coming from the most important part of your body, the brain. And the fact that there is no cure. At times, I still find it hard to deal with. I always used to ask the questions 'why me?' or 'what did I do to deserve this?'; even after my surgeries. My mom would always turn it into something positive by responding, 'Because you can do this, you're strong.' She would also put me up on a pedestal and say that I was a hero, to her and my sister. She would tell me, and still does tell me, that I basically saved their lives. I'm not sure if you know this or not but Chiari is genetic. So at this moment, you are a hero as well. Maybe you are laying down the ground work for future family members, or even present family members, just as I did. Not trying to scare you, with the genetic factor, just thought you'd might like to know. Once I embraced it, it made me stronger. I now realize I can take my pain and suffering from Chiari and do good with it by helping others learn more about the condition. The most important thing to remember , is to never lose hope and always follow your gut instinct.
I know I'm young, but I've learned a lot in the past few years battling Chiari. If you ever have any questions about Chiari, I could tell you a lot about it and it's related conditions. I see that your son is my age, and if he ever needs someone to talk to or vent to, you can find my email on www.screwedontight.com; a website I started for awareness. I hope I helped a little, and I hope you find the answers you deserve.
Take care,
Macie.(:
Macie
You are so smart thanks for your info.
@luvbug: No problem! I'm here anytime if you or your son need anyone to talk to, or have any questions!
@Lynn: Thank you! And you're Welcome! (:
Macie, you are amazing! Keep it going, honey!
Thank you!