Chiari Online Support Group

Hello everyone

My name is Geri and I’ve been here for awhile, but just didn’t know what to say. I was diagnosed with Chiari 1 with 7mm herniation this past November. I started having Chiari headaches in 2014, but as you probably already know, I was misdiagnosed. I’m now waiting for an appointment with my 3rd neurologist. My general physician asked me this morning if I had considered filing for disability. For months now I have been so overwhelmed with this. I’m so glad I found this site, as I really have no one to talk to or that really understands. I have two daughters, 24 and 12. I’m a single mom and just actually left my job, as the owner was not understanding at all about my issues. It was a bad situation, as she pressured me until I just quit. She knew what she was doing. I know everyone here knows how stressful all of this is. I have learned so much about Chiari since I joined and can’t wait to learn more about everyone. It will be nice to have folks that understand it all. :smile:

Hello Geri!

Welcome to the chiari forum! I am also new here!

I was recently diagnosed myself with just a small herniation, but a tirade of dibilitating symptoms. What I have learned while on this forum is that it is important to know that everyone is different and although we may be experiencing similar symptoms, everyone will have their own story to tell! I find it helps a lot with my anxiety to post on here and to reply to others when I can, because I know I am not on my own in dealing with this!

I too recently left my work and know how it feels to be pressured into the situation! It’s not fair and unfortunately not enough people are educated in exactly what chiari is! We have to take the front seat on our journey and although it may be odd at first, we have to be the experts!

We are here for you!

Sara from Canada

Thank you for the welcome! It is nice to have found this community where we can can be there for each other.

Hi Geri, I’m relatively new as well and it’s reassuring to know there are others who are walking in similar shoes. As challenging as this journey is (and I wouldn’t wish it on anyone) it helps knowing there are others who just ‘get it’.
I hope this group acts as a great support to you. Even though we may live in different parts of the globe, it makes it easier knowing we’re all in this together and not facing it alone. We can hold onto hope, share our stories and look forward to a cure for Chiari one day.

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Hi Sally, it is very reassuring to know there are others who are walking
in similar shoes. We can share our stories and be a supportive for each
other. Thank you for welcoming me.

Hi Annie and welcome to the group. I have been on this forum less than a year. It has really helped me to share my journey with others. It took about six years to get a diagnosis of Chiari. I had surgery in 2014. As I had a lot of nerve damage, I’m in assisted living. I’m still able to walk. I had to leave my job of almost 10 years in HR and Risk Management for a county government. I was able to receive short term and long term disability. I now receive Social Security. I had to leave my home and move to another state to be near our son. My husband lives in an apartment. Most people have no idea of the ways Chiari affects you. Even the docs can’t always assist you. If I can ever help, please let me know.

Hi! My name is Noelle and I am very new to the Chairi scene. Two MRI’s showed that I have Chairi 1 but the doctor I saw last week in the hospital never told me about what was found in my MRI’s. I have SO many of the symptoms people are experiencing here. I am waiting on 2 neurologist appointments to get more information and help. If my MRI’s show it and state there is chiari malformation with 5 mm herniation, does this mean I have it? It was my primary physician who told me about the results of my MRI’s at a follow up appointment after my recent hospital stay for unexplained numbness and severe weakness in my arms and legs, etc. My doctor was quite alarmed no one had told me about the results. Is Chiari just difficult for physicians to recognize? I’m just so confused…does this mean I have it or not? I know this is not a group of physicians, but can anyone shed any light on why a doc wouldn’t tell me about it? I am so baffled and this is a whole new world to me that I never knew existed…

Thanks for having a place where I can come to ask these questions.

Noelle

Hey, Geri!   (That's 'southern' for "Hi!!!!")       I can feel your pain!   I went 10 years misdiagnosed.     And when I finally became nearly a vegetable and brain-dead, the only diagnosis I was given disability for was "Chronic Fatigue Syndrome!"  One of the many frustrating things about Chiaris is that NO ONE CAN SEE YOU HAVE IT!   That's so true of all Central Nervous System disabilities.  We look so... well... normal!  But, the pain and function failures are very much there!

I know it’s hard to lose your job. Stress can really bring on Chiari pain ten-fold, though. And, lots of jobs are very stressful!! But, having no income can be stressful, too. I hope and pray you find what will work for you. The ideal, of course, would be to have a fun job that is flexible. Since I have been on disability, I’ve found that I can VOLUNTEER at a job I really really love. And, when you are a volunteer, I can show up when I fell functional, and stay home when not functional. For me, disability was the best thing that could have happened.

Thank you for the welcome Beth. I really appreciate it!