Scary headaches

I've been having these headaches for about 3 years now. At first it was just a vague, pulsing in my head when I coughed, or other straining movements. When I had a respiratory infection, and I coughed harder, the headache would get much worse. I've seen my primary a couple of times about these headaches, and both times he sent me to an ENT. There were scans of my head and arteries. The ENT said he couldn't find the cause, but it wasn't a stroke, an aneurism, or cancer.

However, the headaches have continued to get worse. They are really scary when I'm sick, but now are also rather bad when I'm healthy. The headaches were unbearable when I had bronchitis over the holidays. For 3 weeks I would cough and hack, then just hold my head steady until the blinding pain subsided. This happened during our Christmas vacation when we were traveling and visiting relatives. I had to have hubby drive because I couldn't risk having a coughing fit/blinding headache when I was driving.

I went back to my primary early January and said we have to do something; I can't live like this anymore. This time he sent me to a neurologist.

The neurologist said that I have a classic case of cough headaches. (He was surprised that no one sent me to a neurologist sooner.) About half of cough headaches have no cause that we can see, and are treated with medication. The other half are caused by a Chiari malformation, which is a structural defect that causes cerebellum to be forced through the opening at the base of the skull into the spinal cord. Researchers estimate that about 1 in 1,000 people have Chiari malformations. Symptoms often do not develop until adulthood. He gave me a script for the medication and sent me off for a MRI.

My MRI of the brain showed a Chiari malformation. The radiologist recommend (& my neurologist agreed) to have me come back for an MRI of the cervical spine to see how big the displacement. We found out: 15mm. The neurologist told me most people with a Chiari malformation start to feel symptoms around 7 mm; mine is doubled that. My brain is being forced into my spinal column by 15 mm! The neurologist said to skip the medication (and its side-effects) and sent me on to a neurosurgeon.

The neurosurgeon said I have a classic case of Chiari malformation. He recommends decompression surgery.  The surgery is routine, he’s does them “all the time.” My surgery is scheduled for March 9. I need to go through Pre-Admission Testing and medical clearance from my primary for the surgery.

Then it was back to the neurologist for my follow up appointment. I asked the neurologist about the risks/benefits of the surgery and his recommendation. He said in addition to the large Chiari malformation, I am developing a Syringomyelia, or syrinx, which is CSF-filled tubular cyst that forms within the spinal cord’s central canal. This is very common with Chiari malformations. The growing syrinx destroys the center of the spinal cord (you can figure out the rest). Not only does my neurologist recommend surgery, he said, “If you were my daughter, I’d recommend doing it soon.” He also said I need an ENT consult because the MRIs showed that I have a parapharyngeal mass which must be cleared before surgery.

I'm sorry I haven't said anything before because it has been overwhelming for me. I've had several doctor visits and imaging tests in the last few weeks. (I also squeezed in a resume and cover letter during those weeks.) Every time I start a post I get pulled away and I lose my train of thought.

So I have decided to have the surgery. Next up, Pre-Admission Testing, ENT consult, and clearance from my primary.