Saturday, April 10, 2010

my aborted MRI scan at cal tech

Another update on my adventures at the cal tech emotions lab, co-starring Ralph Adolphs, Dan Kennedy, Katherine Holcomb and perhaps a few others. I was going to have a structural MRI scan which i think the purpose of was to get some baseline measurements of some resting activity of my brain and/or possibly to do connectivity studies using my brain as one of the sample brains. I have written previously in one place about my experiences many years ago being a research subject in a couple of MRI studies with the Eric Courchesne research group in San Diego many years ago. I also wrote about it in a dated blog post from almost two years ago.

Right before I was last a research subject in the Courchesne group, Greg Allen, a graduate student at UCSD at the time, was doing a study involving functional MRI scanning which is different from structural imaging in that you have to do a task while being scanned and it measures the blood flow to various areas of the brain while doing the task. I agreed to be one of the subjects in this study. After a two hour drive to San Diego from L.A. I was not able to fit into the scanner along with the computer equipment that was in the scanner so that the person could do the task. I was not able to participate in that study.

Well, the same thing happened last Wednesday. Apparently the technology of scans has changed and they have to put coil around your head in order to measure the brain. The coil for this machine was quite small and could not fit on my face so I was not able to participate in this study either. Katherine, who is the coordinator of research in the lab, told me that they have another scanner that has a larger coil that would likely fit me but they still did not have the software or other things they needed in that scanner and they would call me, so maybe I will still be able to participate at some point. Of course they do research involving functional MRI as well, so I might not be able to fit with the computer equipment in that one also. But we will see.

I participated in some other studies that were not MRI, such as filling out a questionnaire, evaluating positive and negative emotions on these faces on a computer and taking some stuff that was apparently from an abridged version of the Wechsler IQ test.

Apparently the review board the the CIT emotions lab is under does not allow people to know the results of their scans and is not allowed to show them pictures of their own brains, so I would not have been able to write the same stuff that I wrote in the past about my experiences with the Courchesne group anyhow. However, it was a disappoint that I could not participate as a subject at this time.

I wanted to go to graduate school and become a brain researcher but my disability impaired me from getting there. I have written elsewhere about how rogue neurodiversity researcher Morton Gernsbacher trivialized my dreams. Being able to be a research subject is the next best thing, though not sure how much I will ever know about the brain and autism and ongoing research, let alone transcend the knowledge of Dan Kennedy, Matthew Belmonte, Ralph Adolphs and Eric Courchesne and others as per my pipe dream. So it goes.


Kent Adams said...

"The coil for this machine was quite small and could not fit on my face so I was not able to participate in this study either. "

Just curious, is the coil meant for typical heads? Seems like an oversight if so. Many if not most autistic people have macroencephaly, and typical "head gear" is too small for us.

The only reason I believe that researchers don't allow subjects to review their own scans is out of convenience to the researcher. Do you think there could any other reason than that?

jonathan said...

I don't know about the sizes of the head coils, they might be designed to fit people with smaller noses than myself, i don't know. They apparently do scan some other persons with ASD's and they are grown as this group only does 18 and up.

I was told by Dan Kennedy that he is not allowed to even see his own brain. Matthew Belmonte told me that some review boards don't want people looking at their own brains because if they have some disease and see it, it might upset them.

SM69 said...

And what do you think of not having access to the results of a normal hospital investigation?

This happened to me recently, my son was having an EEG when he suffered severe drug-side effects from an anti-epileptic. At the time, it was not known why he had deteriorated so badly. As he lay with his dad on the bed, being monitored, I stood behind the technician, looking at the traces on the computer screen. I was told I was not allowed to watch. I was shocked, I argued for a few seconds at the non-sense of this, but I thought all the guy was doing was his job and there was no bending on rules. At least he could not bend. And I needed to keep all my energy to myself and to help my son, at the time, we had no clue where we were heading. So I did shut up.

ian MacGregor said...

I thought non-normal head size was more a characteristic of autistic children than adults. A researcher may not a subject to see results as that may influence the subject's behavior in any follow-up.

One would think the records of your minor children would be open to the parent. However there are exceptions such as abortion. Perhaps HIPAA regulations prevented the doctor from letting a parent see the scan. Perthaps he was worried that your reaction could influence the scan. Both of these opinions are purely conjecture.