The down, the dirty, the skinny, the scat.

Gadolinium: heavy on my mind

You have no idea what’s going on in my head. Really. And, nor do they–the authorities.

That’s an MRI of my brain, demonstrating gadolinium deposition secondary to injected contrast. It is the rather faint, white, symmetrical ‘stain’ (it is actually referred to as a brain stain). Rorschach like. It’s been there since at least December of 2016, when it first showed up in my radiology report: There is nonspecific intrinsic T1 hyperintensity involving the globus pallidus and dentate nuclei bilaterally likely secondary to gadolinium deposition of uncertain clinical significance.

I had been aware of the possibility of gadolinium retention for at least a year prior to this finding and because of my concerns, had once again become non-compliant—in this case, refusing contrast.

To be clear, I have more latitude here than someone with either active or a history of brain mets. I’ve never had mets to my brain, which is part of the reason I have pushed back on scans that were mandated by protocol but not clinically indicated. Part of the rub when one is a clinical trial participant rather than a patient.

The day I found out about the gadolinium I was pissed. Really, really pissed.

As a requirement of the trial we took a cognitive test at each visit and part of that test was to write a simple sentence. I had a monkey in the cage/rage moment; threw a little scat at the keeper, if you will. My sentence that day read ‘Fuck you (sponsor of the trial), I have heavy metal on my brain.’

The jury is still out as to whether or not there already have been or will be side effects associated with gadolinium retention. Although everyone can certainly agree that it’s probably better not to have gadolinium in one’s brain.

And before anyone panics, know that it is still extraordinarily uncommon (and no, I did not want to be the poster child for this one). I believe I am Dr. Shaw’s only patient to date with this finding. And in discussion with her about this issue, she is adamant that a CT scan of the brain without contrast is basically useless.

My frustration was with the fact that I didn’t need the bloody MRI’s in the first place and I have had–at MGH alone–42 of them. That, my friends, is why I no longer hesitate to be noncompliant.

9 responses to “The down, the dirty, the skinny, the scat.

  1. You have been a Maverick since I met you. Noncompliant suits your demeanor. Barge ahead. Stakes are high.

  2. At least they are letting people know. I received a full page letter stating deposits are a possibility but they don’t know the consequences. Of course to avoid any potential/future lawsuits.
    It blows my mind that you’ve never had a brain met.

    • I’m glad they are letting people know. I have also read that radiologists are underreporting. I have invasive mucinous adenocarcinoma, an uncommon variant of lung cancer that in not indolent, but does typically stay confined to the lungs.

      xo Linnea

  3. Love this.
    Good to see a different view point on all of these scans. Xx

  4. 42 MRI’s? Yikes! I would have thought once or twice a year should’ve sufficed.

    Best hopes,

    Craig in PA

  5. Hang in there, babe! I’m proud of your strength and stubbornness!
    xx barb anspaugh

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s