another day another doctor, part 2

Yesterday I went with Karl to see his neuropsychologist. She wrote off all the research I've done about TBI causing neurodegeneration. She is of the complete opposite opinion that mild TBIs don't often cause long term damage.

I asked for studies to prove her side. I asked where she would look for studies to support her.

"Well," she said, "I would start with PubMed."

"Have you ever heard of The National Center for Biotechnology Information?" I asked, referencing the website where I pulled all of the TBI and concussion studies in my pamphlet.

"No," she said, "I haven't."

Late last night I was having trouble sleeping. I started second guessing myself and the research I've done. She seemed so sure that mild TBIs don't cause long term damage. She explained that pain can cause decreases in memory and attention . She explained that PTSD can cause decreases in memory and attention. She explained that PTSD and chronic pain combined can certainly cause deficits and that it is impossible to know exactly why Karl has memory and attention problems.

At times she seemed to hear me and understand my frustrations, although she seemed completely flabbergasted that I have no hope Karl will get better. She wanted me to have hope. She wanted us both to believe Karl could get better. So we explained, patiently, that when we expect his brain to work, we are disappointed in devastating ways. I cried, frustrated that she wants me to believe he will heal when I have watched him steadily decline for seven years. She brought up the speech therapy he's doing now. In her defense, she honestly believes that the memory training they're doing twice a week for an hour will make a difference. It is not making any noticeable difference, but I suppose it might..... I doubt it, but it might. My best hope is to stop the decline or slow it. The neuropsychologist wants us to fix it. (Even the civilian doctors tell us it is unfixable.)

We talked about the accommodations Karl already makes. We talked about how Karl seems so normal because he is very intelligent. We agreed on several points. She seemed very reasonable, which is why at midnight I went and looked up PubMed, where she said she would start looking for studies... especially since she had never heard of The National Center for Biotechnology Information.

I discovered something that both amused and saddened me.

This is the web address for PubMed: http://www.ncbi.nlm.nih.gov/pubmed

It is hosted on The National Center for Biotechnology Information (http://www.ncbi.nlm.nih.gov), which the neuropsychologist has never heard of. I hope she discovers that when she goes to pull up studies for me to look at to support her position. I hope she is chagrined. I hope she feels foolish. I hope she is willing to give the information I gave her a more thorough look, putting aside her preconceived notions. I hope she is willing to second guess herself after our conversation as I second guessed myself.