Chiari Online Support Group

An answer after years of pain


#1

For as long as I can remember I have had a headache of some kind and neck and back pain. I had been to neurologists that did EEG and EKG's and found nothing and went to a chiropractor 3 times a week for many years. The chiropractor told me my back and neck pain was from the size of my breast. So I gave up on seeking medical care and suffered.

I met my husband again 10 years ago when he came home from the Navy and immediately we where inseparable. We got married two years into our relationship. We have two beautiful curly haired little girls. I was always in pain and could always enjoy motherhood. My wide array of symptoms stumped everyone around me. I progressive got worse until my husband and I made the decision that it was time to go back to the doctor to see why I was always sick and in so much pain and weak all the time. First we went to my GP, did every blood test he could with no answers, so he sent me to a neurologist to be tested for MS. The first neurologist appointment was horrible, he told me my symptoms where to all over the map and that I was crazy and to seek mental health professional. I told him that something was wrong and to please order a MRI. Well after fighting with the insurance company and his nurse not know what clinical notes where. I finally got a MRI. After 2 1/2 hours in the machine its done and I make an appointment to get report. This time when I walk into the neurologist office his story changed and he said I needed to see a neurosurgeon ASAP. It took almost two weeks to get into see a surgeon but as soon as he walked in the room he was talking about surgery for the Chiari Malformation and the syrnix in my spinal cord. He was amazed that I was walking as well as I was. My spinal cord is almost completely blocked by the Chiari and then the syrinx is blocking 3/4 of my spinal cord as well.

My surgery is less than 3 weeks away, and I am scared to death about it. I worry about my husband and his stress level with having to take on caring for me while I can't. My girls are scared that Mommy will never be better. And well the simple fact I am having brain surgery.


#2

As scary as this diagnosis is, it is still better than living with those symptoms, getting worse and not knowing the cause.

I wish you best of luck in the surgery! Hope you get much, much better and your daughters see their mom getting better soon! :)