Monday, March 26, 2012

Visiting the Neurologist

After the initial shock of being diagnosed with Chiari wore off, I made an appointment with my neurologist. After all, it deals with the brain so the NL seemed like the place to start and since I already had one...

Well, that didn't get me anywhere.

Let me start by saying that I wasn't real confident that it was going to be a successful visit to begin with. Over the past few years I've been getting more and more frustrated with my NL but kept giving him the benefit of the doubt. My migraine meds stopped working years ago but his reaction was to simply increase my anti-convulsants. Eventually, I stopped taking those because I was no longer even convinced that I had epilepsy. I noticed no change in my seizure like activity and when I tried to ask him questions about the type of seizures I had (my OBGYN wanted to know) he seemed to get angry and couldn't answer me.

Anyway, he immediately went into defense mode when I showed him the MRI report. He told me I "might" have had a malformation but that it wasn't causing me problems. That, more than likely, I just had a vitamin B12 deficiency and restless leg syndrome. Yes, restless leg syndrome CAN be a part of Chiari but RLS does not explain the other symptoms. You know, the ones above my legs.

I told him that I'd had a full panel run and that my levels were normal. His reply was that they said that anything less than 300 were normal but really the normal range was 350. When I told him that my levels were 392 he corrected himself and said that anything under 400 was normal. So I can only assume that if I had told him my B12 was 500 he would have told me that it needed to be 550.

I left feeling frustrated.

Obviously the NL does not do the surgery but I will still need one for post-op and continued Chiari management. Unfortunately, it's not going to be this NL. The time has come for us to part ways.

This is the same NL who shrugged and told me that I'd be fine and that my headaches weren't anything to worry about when I was pregnant. Three days later, I had a complete placental abruption, delivered 4 weeks early, and was found to have preeclampsia. So it's not the first time he's dropped the ball. 

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