The Search for a Doctor Begins

By mid-summer, my vertigo was getting out of control. Something as simple as lying on the couch would feel like a free ticket on the Matterhorn... great that it was free, but I didn't have the option of getting off.

Never being a fan of rollercoasters, I knew it was time to take action. I had been diagnosed with Chiari but wasn't convinced that the dizziness was related. My next stop would be with a local neurologist, followed by a local ENT.

The neurologist believed that Chiari was the cause, but referred me to a local neurosurgeon to be certain. I had several pre-meeting MRIs taken, met with the neurosurgeon, and we had a good discussion.

He explained that my tonsils were significantly descended into the foramen magnum (past C1, nearly to C2) and surgery was currently the only means to relieve the symptoms. The success rate was around 86%, and there were of course no guarantees. He noted that I didn't yet have a syrinx (a cyst that forms in the spinal cord and can in some cases lead to paralysis), and a surgery sooner than later would reduce the chance of getting one. Not being a fan of syrinxes, I set a date for the decompression -- September 26th.

I returned home feeling good about the discussion. During our conversation, I was comforted by the neurosurgeon's knowledge and responses to questions, and I came away with the impression that he was an expert in his field. I found Stacey in the office, and told her the news -- coincidentally on her birthday (7/30 for those who need to update their address books). In hindsight, this isn't the same as bringing home flowers. Lesson learned.

Stacey agreed to go along with my decision, but as the days went by, my tendency to over-research things took hold and I began culling newsgroups and blogs for any information about the neurosurgeon and facility. I discovered that he was a well-respected pediatric neurosurgeon and was liked by patients, however I also learned that a decompression for children and adults is significantly different. I put together a new list of questions to ask, and set up a follow-up appointment for Stacey and I to discuss with him.

In the meantime, I saw an ENT to be absolutely, 100%, Boston-will-never-win-the-world-series certain that there were no ear imbalance issues. The ENT quickly confirmed that my hearing was fine, my inner ear anatomy was fine, my humor wasn't so fine, and "if it looks like a duck and quacks like a duck, it must be Chiari."

A few weeks before my scheduled surgery, Stacey and I took time off work for our follow-up meeting. We spent 45 minutes in the waiting room, another 45 minutes in the patient room, and finally, the doctor came in. Ah, but wait... it wasn't the doctor, but his P.A. It was late in the day, and our best guess was that the doctor was still tied up with a patient so his assistant came in to help answer questions.

We were beyond irritated, so the best approach here would have been for her to walk in, explain her role, explain why the doctor couldn't see us, explain why we were left waiting for nearly two hours, and answer all our questions to our satisfaction. She proceeded to do exactly none of that.

When asked about recovery, she went so far as to suggest I spend my time in Tahoe because "what better place to recover than hanging out in Tahoe". Yes indeed, what better place to recover from brain surgery than watching other people enjoy things from inside a room.

Nearly every question asked was either answered condescendingly, or not at all. At one point when I asked whether there were risks in waiting, she explained that my "tonsils could be lopped off if I was in a car crash." I knew only two things at this point: the drive home would be exceptionally slow, and I had lost confidence in having my surgery done here.

I don't doubt that the neurosurgeon and facility would have ultimately been fine to use, but in these cases you need to go with your gut, and my gut told me that this was no longer going to be a fit. Although it was going to be a logistical pain to have surgery out of my local area, it was time to expand the search.

Coming up Next: The Doctor is In