Hello everyone! I am 39 and just found out 4 days ago that I have CM1. I have had headaches/ migraines since I was very young that have gotten worse over the years. Over 3 years ago I had to quit a job that I really enjoyed because of a constant migraine. I went to a neurologist who treated me like I was lower than dirt. So I stop going. Not long after that we lost our health insurance and had no choice but to just deal with it the best I could for the next few years. Then about a year ago my husband thought I was having a stroke and called 911. By the time I arrived a the hospital I was almost back to normal. The ER doctor said I may have what is called Hemiplegic migraines. It took awhile to find a neurologist that understood those kind of migraines. So when I got in to see him he tried everything the medication either did not work or I had nasty side effects. He then referred me to a headache specialist who sent me for a MRI with and without contrast. That's when they found the Chiari Malformation 1. It is only 4 mm and in the e-mail that told me of my diagnosis that they normally do not do surgery unless it is 5 mm or bigger. I don't want to have surgery but I would like to have relief and try to get back some of my life. I guess I will have to wait and see what he says after I have a second MRI C- spine and see my doctor in a few weeks.
Welcome, Donnya. As you are new to Chiari, if you haven’t yet check out the Chiari Info for Members’ tab above. You’ll find alot of useful information there. I hope all goes well with your next consult. Something to keep in mind also is thst many here have not found the surgery to be a cure-all for their symptoms. This is not to discourage you, but rather something for you to carefully consider in weighing options.
Hugs,
Laurie