Sunday, February 1, 2015

Second Opinion

Eli argued strongly that I should seek a second opinion on the seizure/stroke/cognitive impairment issue surrounding my cardiac event. When he runs into a programming problem, he does better to pay an expert than to try suss it out by himself.

That very afternoon I got a letter from my insurance offering a 'case manager' service. Immediately, I called. The lady said that my Primary should be acting as a quarterback in coordinating meds and services. But he defers to the neurologists and cardiologists. I am entitled to a second opinion (does this imply that the insurance will pay?) Eli had found a name of a doc in the Boston area through a friend of the son of a colleague....  How should I approach this guy? Is he even the expert I want? I Googled him and was unable to assess his expertise. The sites involved with seizure seemed to presume epilepsy and would offer advice on how to deal with it. There is no evidence that I had a seizure except my behavior.

The Internet approach seems haphazard and amateurish. Why not involve the experts?

The insurance case manager offered that the neurologists should be interested in a second opinion, too, since they concur that they don't understand what is going on. So I asked my neurologist to recommend a practice for another opinion. At first he seemed a bit defensive, but he dealt with that well, and he started checking around.

We have been communicating by phone, but for the first week he did not return my call. His name did not drop down on the hospital's MyHealthOnline electronic messaging system. Only some results are posted there in any case. Some records have to be transcribed by hand before I can see them. I got a copy of my MRI scan as a video on a CD. My iMac  can't read it, so I have to get the video converted. Another interesting task.

I have not seen the results of the EEG or of the 24-hour urine sample yet. Linda said that getting detail from an EEG was like trying to tell what was going on at a football match by listing to the roar from outside the stadium. The results were normal enough that I can back off on the dose of Keppra, for which I am thankful. I think that med was having serious side effects.

Right now I am dealing with a wound on the bottom of my left foot. Since I have a neuropathy, I was not able to feel when things started to go wrong. Did I mention the neuropathy? It was frustrating to have the head of Neurology focus on that and on my Bells Palsy from the 1970s rather than address the seizure/stroke/head issues I was most concerned about.

If we find an appropriate person to give a second opinion, the test results and EEG will be made available. Electronic records should make it easy to share information at a distance. Will they want to see me in person?

1 comment:

Ron Manganiello said...

Wow - you have your hands full trying to sort out the options. I have no wisdom to share but I think you are on the right path with obtaining a second opinion. Since the 1st set of docs are unclear, maybe you are still seeking a first opinion!
All the best,
Ron