Hello @mcgh1 and welcome to Mayo Clinic Connect. I see you are looking to connect with others who have experience with Chiari Malformation 1, so you will notice I have moved your post into an existing discussion on the same topic which you can find here:
- Chiari Malformation Type 1 and getting a second opinion: https://connect.mayoclinic.org/discussion/chiari-malformation-type-1-2/

Have you been diagnosed? Are you comfortable sharing a bit about your experience so that members like @nancy82415 and @jenniferhunter may meet you where you are at in your journey?

@mcgh1 I was diagnosed with a Chiari Malformation which is the same as Arnold Chiari Malformation 1. I was diagnosed back in 2015 at the age of 50. My herniation was 17mm with the syrinx at 11mm from my foramen magnum to my T6 vertebrae. Was diagnosed officially on August 24, 2015 and had decompression surgery September 22, 2015.

My symptoms did not appear until 2010. They were numbness and tingling in my right hand. At that time I was diagnosed with severe ulnar neuropathy, carpal tunnel syndrome and trigger finger in two fingers. Surgery was done, then 1 yr later surgery was done again to remove scar tissue. Then 1 yr later I was rear ended at a stop light. Numbness and tingling came back quickly. Elbow surgery was done to decompress the nerve causing the numbness and tingling. So I had three surgeries within 21 months.

Three years after the last surgery I was released from seeing the orthopedic hand surgeon. But one year later I started losing the use of my thumb. So it was back to the orthopedic hand surgeon. He suspected something systemic was going on.

I also noticed that I would lose my balance when squatting, felt unsafe climbing a ladder, after doing outside when bending over felt weakness in my body, when sneezing it felt like my head would explode and extreme fatigue. I just figured this was all from getting older and trying to do everything. Now I know what they were caused by. Makes total sense now.

Started the journey to find the cause. Unfortunately the journey was not easy and was heartbreaking at times. But my journey took me to Mayo Clinic!! I was diagnosed, had surgery and continue to be seen annually for monitoring there. I thank GOD each and everyday for my team of doctors.

After having surgery all my symptoms went away. I felt light headed after surgery in the best possible way. I never realized I was living with so much pressure inside my head. I still fatigue after doing physical labor and I do have permanent nerve damage in my right hand. But I have adapted and pace myself when doing physical work.

I have attached my MRI that shows the herniation and syrinx before surgery. I still can’t believe I was so close to losing use of all my extremities and being confined to a wheelchair.