Search This Blog

Sunday, June 5, 2011

How did I find out about this?

How did I suddenly end up needing surgery on my head?!

Well it all started with a headache that wouldn't quit in March. This headache started at the base of my skull and wrapped around like a scarf. Nothing I took or did would get rid of it or even help. The first day was the worst kind of headache. You know: the kind you just sleep off. I was convinced I was coming down with the flu.

The second day, the headache was worse and accompanied by nausea. I wasn't alarmed yet, though, because day one was spent nursing a sick child with a stomach virus. She'd had a headache and vomiting. I just figured it was my turn. At the end of this day, I felt even worse. The headache was so bad, I couldn't tolerate light, sound or movement. I also couldn't sleep. Finally, I tried to induce vomiting to get that virus out once and for all. That just made everything worse. Eventually, I slept about 2 hours.

Day three: I stayed in the bed while David got the girls off to school. As I lay there listening to the regular morning routine, tears streamed down my face without the sound that would have surely split my head in two. I wanted to tell him how bad it was, but I  wanted more the silence promised by his and the chatty childrens' departure. By about 9:30 am, I called David at work to ask him to take me to urgent care.

Once the urgent care doctor determined that I did not have a history of migraines (which he'd called my headache), he ordered a CT scan. The results concerned him. He sent me back to my primary care doctor and said I should have her order an MRI. Meanwhile, not feeling comfortable with the M.D. volley, I called a friend who works at Johns Hopkins Neurology. She told me that it sounded like a Chiari Malformation, but that the MRI would confirm the diagnosis. She also made sure I got a same week Appointment with a Neurologist.

It was raining the morning I was scheduled to get my MRI Flow Study. On the way to drop the kids off at school, I crashed my car. Then, with additional neck and back pain, I went about my appointed rounds which now included insurance phone calls, renting a car and getting an MRI.

The next day, I took my MRI results to the Neurologist. He made the diagnosis of a Chiari Malformation, with a 15mm herniation, then referred me to a Neurosurgeon. I met with Dr. Jon Weingart about two weeks later. He explained that, while my condition was not life threatening, my symptoms were likely to worsen over time. He said I would have to decide what quality of life I wanted and plan surgery for a time that fit my schedule.

Well, to me, that meant I should go investigate every alternative I could to avoid or postpone the surgery. I had some pain management success that was all too temporary. I did a few things that I now know will exacerbate my symptoms. Meanwhile, my symptoms consistently worsened by the week. Eventually, my pain overtook my fear, and I scheduled the surgery for June 13, 2011.


  1. Mommy, I am extremely proud of you for taking this big step! I admit i was a little scared when you first told me about your surgery, but i think you made a good decision. It really hurts me to think of you in that kind of pain every day and i want it to stop too because i love you and i don't want you to EVER have to be in ANY kind of pain. Inshallah, your surgery will be successful, and will stop all your pain and the malformation itself.

  2. Glad you started the blog. Inshallah, the surgery and recovery will go quickly and painlessly.

  3. My dear friend, sister, confidant, advisor…..
    Your bravery and wisdom are awe inspiring. Thank you for letting us share this deeply personal experience with you. Your words will undoubtedly help all who gaze over them. God loves you. Your family loves you. I love you. For that you are blessed and I am anxious to see you get back to YOU.