I am 32 and I was living my life the past two years, miserable. I have lived most of my young adult/adult life with migraines and headaches. I just figured it was genetic, my grandma always had migraines. Then the last two years I noticed my vision was doubled and my balance became horrible. I was walking around and I felt like I was always drunk!! I stumbled, had to hold onto walls, and even fell twice! My eye specialist told me it was just my eye muscles and I asked a few times if it could be my brain. Seeing it just drastically started happening. I went to an eye therapist to help me with my eyes, after multiple glasses and lenses and appointments, no amount of prism was helping my double vision or my horrible balance and dizziness. I got an MRI that day 11/14/19 and was told I have Chiari type 1. I found a few neurologist and made two different appointments. One I wanted, and one that I could get into sooner. The neurologist I went to see first, had me take my shoes off and wiggled my toes. He told me my bad balance had nothing to do with “Arnold Chiari” as he called it. I could tell he was old school and didn’t have much experience in Chiari. He told me he’d like me to get on a daily migraine medicine and call it a day. I couldn’t take that for an answer, I couldn’t live like that. So I waited a few weeks and went to the neurologist I knew had some experience in Chiari. Within a few minutes of meeting the neurologist, Dr. BB in Ft Worth/Arlington, she told me I needed surgery. That my spine was being smashed and that was part of the reason my balance was so horrible and getting worse. She told me if I sneezed, feel, or got into an accident, I could become paralyzed with the way my spine was being smushed by my brainstem and brain being smashed. After a lot of research, I found a surgeon in Dallas who specializes in Chiari. Dr. John Krumerman, from Dallas Methodist. My Chiari was a “whopper” as he called it! Most Chiari’s are up to 3mm. Mine was hemorrhaging 3 CM, yes 3 CM! He said he’s done so many of these surgeries and the surgeon he trained under has done a ton of Chiari surgeries and they have never seen one this big! Go big or go home…but on 1/13/20, I had decompression surgery. After surgery, it was a long recovery, but my husband and mom helped me. Some days were harder than others. I needed a walker to get my balance back the first week or so. l was in ICU for 3 days and then the regular room for one day. (5/27/20) But I am so happy to say, my balance is almost back to normal(I couldn’t walk a straight line before to save my life, now I’m a pro!), my eye paralysis (nystagmus) is almost back to normal, my double vision is almost completely gone, I have no headaches, and I can swallow normal again! I had a large syrinx (fluid filled sac) on my spinal cord that has almost diminished!! My life has changed so much in the last few months after my surgery. I still can’t believe how bad my health had gotten and how scary it was. But my life has changed for the better after the surgery. If you are having symptoms that are causing you issues in your everyday life, I would 10000% recommend having the decompression surgery. My surgery was a bit more extreme than most because of the size, and I’d still choose to have the surgery again. I can’t imagine my life If I didn’t have the surgery. If anyone is weighing the options, having the surgery was the best thing I’ve ever done. It saved my life. Please message me if you have any questions or if your in the DFW area, I’d love to give you my surgeons information. It isn’t an easy journey and nothing is guaranteed when it comes to surgery, but for me, it was so worth it!
Dr. John Krumerman- Methodist Hospital For Surgery