Chiari Online Support Group

Keeping my chin up


As I look back over my life, I can see the affects of Chiari and basilar invagination. However, it wasn’t until 12 years ago I sought help.
I used to walk 4.5 miles every day on dirt farm roads. One day my legs stopped working. I sat there in the road for over an hour. After the second incident, I made an appointment with my doctor. Multiple tests were run, x rays taken, to no avail. I was handed the name of a psychiatrist. I quit seeing doctors.
Three years ago dizziness, inability to focus, constant pressure and headaches, falling down the stairs, etc made it clear something was wrong and I needed help. Blood tests & x rays revealed nothing. I was told that other than having a very low blood pressure, I was fine! Swore off doctors again.
Two years ago I was bedridden for the most part. My husband had started seeing a new GP, and hounded me to see her. Within 6 months she had diagnosed Chiari and basilar invagination. As my health started to take a nosedive, she went above and beyond; calling different NS, setting up appointments. The brain fog was so thick I had a tough time keeping up. She decided I needed surgery, and she contacted the surgeon who did my surgery. Informing him of my poor condition, pleading my case, I had surgery 1 month after meeting him, May 10, 2017.
There have been many difficulties since surgery, but a few things have improved. Currently I’m back in bed, have been for 2 weeks, due to dizziness, lack of gross motor skills, loss of feeling in extremities, and horrid headaches.
I do have a psuedomaningacele as well as low CSF. Next Thursday I see my NS.
I do want to say that without my husband, children, grandson, and chosen family I would just crawl in a hole. I love them with all my heart.
I feel so badly for those of you who do not have a support system outside of this (Thank God for this site!). My heart goes out to you!