I just wanted to finally come on and introduce myself. I joined the website earlier this week after trying to decide which Chiari community I thought would be best to join. I was diagnosed just recently - October 3rd. I'm fairly young, only 25, so while it is a relief to find out that my chronic fatigue and other health issues that I shouldn't have at such a young age have most likely been caused by the chiari, it is a lot to take in as I'm sure I don't have to tell any of you :)
It was difficult for me to bring myself to discuss my feelings and symptoms, but I started a blog on google's blogger, kind of as more of a journal, but only in the 2nd post I wrote I already learned something about myself and realized I am ready to move forward and conquer my chiari and not let it take over my life.
I've only ever been a member of one other forum-type website, so apologize if I'm breaking any rules, but if you're interested you can find my blog at http://itsjustbrainsurgery.blogspot.com/
It's not finished, I have to format it and make it look nice :) Right now it's just plain and simple.
Here is the end of my 2nd blog post that finally made me feel ready to talk and move forward, maybe someone else too will find it enlightening, to me, I didn't realize that the chiari had taken over my life to the point that I was choosing to do or not do things because of it, until I typed it...
That was the first day chiari took a part of my life from me. Making me do or not do something because of it. Because it controls me. Someday I will conquer it, and not because the neurosurgeon told me brain surgery is inevitable - because after I just read what I typed I realized that I never want to be controlled by anyone or anything. I am strong and have conquered everything that life has thrown at me so far. Chiari, I think I'm finally ready to face you.
WELCOME.....LOVE YOUR DOG...I just rescued another one...people think we are nut cases....5 dogs!!!!!!
So happy you are here and are sharing with us. Thank you!!!! Also..thanks for the link to your blog!!!
Looking forward to getting to know you.....there are so many super people here...they have helped me so much...words cannot express how this site has helped me. Hope you find the same..sure you will!!!
5 dogs?? Wow, you are nuts!! haha, just kidding, I’d have at least 3 if I didn’t live in an apartment that only allowed 2 - actually, my husband and I were kicked out of our last apartment for having 2 dogs, we were only allowed to have one! So all because of a little 7lb pound barking furball we had to move to a more expensive place - but I’d do anything for my “kids”.
I have some more blog posts to type out before I’m caught up to “now”, but I’m glad it didn’t take me as long as I thought it would to open up to people - I’m ready to learn more about chiari and find out information about surgery and all that fun stuff. It’s going to a be a long journey ahead of me, but i’m much happier now that I’ve come to terms with it.
Welcome.....Love your attitude; I believe a positive attitude is the key to making everything better. I think that recognizing that we can't control what happens to us but that we can control our reaction makes it so much easier to deal with what comes our way. I have lived a very productive wonderful life, am a wife and have raised two beautiful children and now have grandchildren all without knowing that the problems I experienced along the way were most probably caused by chiari, none of which caused me not to have a good life. When I was diagnosed in 2007 a lot of the pieces finally came together. I don't think I would have had to have surgery except that a car wreck in 2008 worsened my symptoms. When they continued to get worse, I had to have the surgery in Jul 2010 and I'm glad I did. It took away most of the symptoms and I've done what I can to conquer it and make it better. For me, having the surgery took away a lot of the fear and worry about what "might happen" and I'm glad I had it. Good luck to you as you begin this journey; it's definitely a personal one and we all react and respond differently to it; I'm happy for your resolve not to let it rule your life.....from experience I know that will serve you well....and......you've found a wonderful site where there are a lot of positive, encouraging people that will help you along the way.
Welcome, way to stay positive! You came to the right board for support! Everyone here is wonderful and very helpful! Chiari does change you, but it doesn’t have to run you! I am having surgery next week. Looking forward to a positive change in my life! I have been suffering 8yrs, but just diagnosed in August. Thrilled that I now have a diagnosis to so many mysterious symptoms over the years! Hope you find all you need here, and look forward to talking more! Take care!
Thanks for all the support and encouragement! I’m so glad I found this place! I can’t believe so many of you are having surgery SO soon! I wish you all the BEST of luck and a speedy recovery…I’m very anxious to start reading information about post-op and how people that have symptoms more like mine are recovering. My doctor seemed to be most worried about my pituitary gland, so I have so much research and questions about that and what will happen after surgery. It’s so overwhelming but I glad I found a place where everyone else is just like me
On another note, I noticed a lot of people here are parents. My husband and I aren’t planning on having children, but always discussed that we would openly welcome an unplanned child as birth control isn’t 100% - however, my neurosurgeon told me that there is a high probability I would die during child birth if I didn’t have the decompression surgery beforehand. The doctor seemed to imply that I would be capable of having a c-section if an accidental pregnancy happened, but that having the decompression surgery after becoming pregnant is risky to the baby.
Hi and welcome to the site i also had my son before been diagnosed. i had an epidural and a natural birth i also had a lumbar puncture two things u arent alloweed with chiara thank god they didnt do any more damage. I love ur positive approached to chairi and u have made me realise that im stronge nathing has ever beaten me and i wont let this either so thank you and welcome again :)
The diagnosis of Chiari can be devastating. I know. I will say that once you are ready to conquer it, I believe the first step is working toward awareness so that others will know what "Key-aree" is when we mention it! Especially the medical profession. In order to conquer it, we need to be able to go to physical therapists, doctors, ERs that know what we are talking about!! There are also other things we can do to bring about awareness. Talk to our families, friends, or people that ask where we got that scar:) If we can bring awareness, we are more likely to get federal funding for research and treatments that we need.
we are here for you! We have all been there! Please feel free to ask any questions and share with us whatever you want:)
Hi & welcome. I'm new too. Not new to Chiari, just to here. I was only diagnosed last August, but knew for a few years after my sister was diagnosed that I had it because I had been symptomatic for over 20 years already. (I'm 45)
Just knowing is a huge thing. You seem to be handling it in a very productive way. Stay positive. It is a lot to take in, but now your on the right track.
I didn’t see the discussion thread before I posted. I have 4 children. My oldest was delivered by natural child birth (no epidural) 10/24/86. My last was born in 2000. I wasn’t diagnosed until 10 years later. I delivered all 4 of them. Had no idea of the risk because I had no idea what was wrong with me at the time. I did have epidurals with the later births too. Just not the first one because she was born on a Military base & they didn’t do that back then.
I had all three of my children before I knew I had Chiari. I delivered my first one completely natural and the other two by c-section. But, back then I only suffered from migraines and like I said, didn't even know I have Chiair. Look luck to you and welcome to the site!
