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!
Thank you so incredibly much for your post! I have been trying to hold-off surgery for two years. I have a surgeon at Johns Hopkins, whom I feel comfortable with, but I’m just scared — especially now with CoVid-19 (I live in NY).
I would love to chat with you more. Thank you again for sharing your experience.
At age 16, my daughter began having fainting spells. The MRI scan showed Chiari, but the symptoms did not match up. She was examined by ear, nose & throat specialists, cardiologists, opthomologists, and neurologists. Over a few weeks time, her symptoms rapidly progressed to include severe headaches, blurred vision, nausea, vertigo, impaired motor skills, and the syncope worsened. At times she would pass in and out if conciousness a half dozen times in twenty minutes. The fainting came randomly and she could not attend school. She was evaluated by the top neurologists at UC Davis and at Lucile Packard Children’s Hospital Stanford. The doctor at UC Davis wanted to do 30 botox injections all over her skull as a treatment for migraines. Migraines don’t cause fainting! The doctor at Stanford said to continue psychotherapy and come back in a year. When pressed for a diagnosis, he said her symptoms were purely psychological due to stress. Yes she was stressed, but he didn’t know my daughter! Two weeks before her symptoms appeared the family had split up because her father had physically threatened her, then we all had the flu, and her 15 year old brother dove deep into depression. She was trying a home study program due to her illness, and her motor skills and vertigo were so bad she began using a walker, or crawling when she was at home. Sure, she had a lot of stress, but also amazing courage, humor, resilience, and tenacity. I could not accept this diagnosis. By chance, her therapist had a former client with Chiari. We got clearance for another opinion, and went to see Dr. Samuel Cirricillo with Sutter Health in Sacramento. He ignored the previous doctor’s reports and conducted a thorough, 45 minute examination and interview. He explained why her symptoms were rare and changeable, and proposed two options for decompression surgery. We had to wait six months to change insurance, but my daughter had a path forward and hope for treatment. Surgery was scheduled one year from the day she first fainted. Her first words in the recovery room were, “Mom, my headache is gone.” Later that day she was walking, slow and steady, but unassisted. I took a month off of work to help while she recovered. The first weeks were painful, but her appetite was returning and her vertigo and nausea were gone. At the post-op visit with Dr. C she went dancing into his office. That was over five years ago. She has had no Chiari symptoms since, and has been able to graduate high school, complete cosmetology training, and begin a successful career as a hair stylist. Chiari had hijacked my daughter’s life down a path toward paralysis. I will be forever grateful to Dr. C, and for my daughter’s warrior spirit to keep on fighting for a cure.
This is awesome! I’ve been also afraid of the surgery. Suffered my whole life, but when I did finally discover it, my dr refered me to Neurosurgeon right away and he recommended surgery. I’m 9.5 mm I can’t imagine 3 cm So happy for you!!!
I turned down surgery in Feb as I was so worried and then came Covid so I’m sure will be awhile before get called again.
Thank you again for your story. You gave me Dr. Krumermann"s name a while back. I have yet to see him because I feel okay, despite having weird symptoms and other issues that may or not be related to the chiari. I feel manageable at 9.5mm but am obviously worried about things progressing. I am hoping to do a consult with him when we upgrade our insurance, but then they require new imaging within 6 months of consult. It is all very stressful, and I am trying to just have a good attitude and not worry about things out of my control.
I am so glad you are doing well, and I may contact you at some point for more specific information.
God Bless you!
I’m so glad my message helped you. Don’t give up the fight. Drill the doctors for everything they know. Question their assumptions.Too many steer the diagnosis to their own specialty and disregard the symptoms that don’t apply. Learn all you can. Follow your gut.
You decide if the doctors are qualified.
So happy for you!!!
