Eyeballs, Brain Stems, and Stuff

I'm gonna make one of these:

So as you recently saw with the photo below —honestly one of my favorite from this entire year:

I am currently going down a Neuroscience rabbit hole at Yale Hospital, after I made the decision (mistake?) to disclose that, once or twice a week, I see these flashing, colorful spots in my upper right field of vision for a few minutes before they disappear.  Interestingly, this is the exact area where I was mostly blind after my surgery for a couple weeks.

Remember the nifty chart my mom made after my surgery?  We used it to keep track of how well I could see out of each eye for quite a while during my brain surgery recovery, and my right eye seriously lagged.

So to entertain my puzzling neuro-mess, I recently added 2 new doctors to my mix, one is Mindy Lahiri from The Mindy Project (seriously—confident, smart, curvy female Indian doctor with great hair), and the other knows my surgeon, Dr. Brem, and did his residency at UPenn, so you KNOW that I am big fans of these people.

So Dr. Lahiri is my new Neurologist and she thinks I’m having migraines with aura.  I think it is plausible, although it is like 99% aura and only 1% headache, so that’s odd.  But when you do a Google Images search of “migraine with aura” there are some striking similarities to what I'm experiencing.

Still, to get some more data, Dr. Lahiri sent me to Dr. Brem Jr. who is a Neuro-Ophthalmologist.  This is a field of medicine I did not know existed.  But pretty much add “Neuro” to the front of every medical field, and you’ve just listed all of my doctors.  Neuro-oncologist, Neuro-surgeon, Neurologist, Neuro-Ophthalmologist, Neuro-Dentist (not that one, but maybe??  We’ll find out…) 

Anyway, the Neuro-Ophthalmologist  had me do all of these (honestly, kind of fun) tests and concluded a few things: 
     1) I have 20-15 vision, LIKE A BOSS!  Honestly, I could have read even smaller print, but that was the smallest they had, so there!  And, 
     2) Regardless of my super vision powers, I have a VERY pronounced blind spot in my upper right field of vision.

My field of vision test results looked something like this:

Oh, and here’s some gross photos of my eyes:

Appreciate those.  The flash was so ridiculously bright that I was totally crying.  Plus I took the pics while I was still way dilated and couldn't even see what I was pointing my phone at.  I guess that was the 20-15 super vision powers helping out!

The Neuro-Ophthalmologist’s third conclusion, like my Neuro-Oncologist, was that,
     3) I may be having partial seizures, ie, unusual activity in the brain stem that wreaks (a little) havoc.  He even went so far as to suggest a diagnosis—Charles Bonnet Syndrome (pronounced “Boe-NAY”).    

Here are some definitions of CBS from peer-reviewed journal articles:

...

Charles Bonnet syndrome is a condition that causes individuals with vision loss to see objects, patterns or images that do not exists (visual hallucinations). These individuals are aware that these hallucinations are only illusions, not reality.  This disorder is likely caused by the brain continuing to interpret images even in their absence.  Hallucinations are more likely to occur when the individual is awake, alone, in dim light, physically inactive, or lacking distractions.  The brain usually adjusts after about a year and hallucinations begin to go away.

Source: Genetic and Rare Diseases Information Center (GARD), supported by ORDR-NCATS and NHGRI.

...

Optometry. 2009 Jul;80(7):360-6. doi: 10.1016/j.optm.2008.10.017.

Charles Bonnet syndrome: case presentation and literature review.

Kester EM¹.

Author information

Abstract

BACKGROUND:

Charles Bonnet syndrome (CBS) is an under-recognized and under-reported disorder that involves visual hallucinations in visually impaired individuals. These patients have intact cognition, do not have hallucinations in any other sensory modalities, and retain insight into the unreal nature of their hallucinations.

...

Consult Pharm. 2013 Mar;28(3):184-8. doi: 10.4140/TCP.n.2013.184.

Charles bonnet syndrome: treating nonpsychiatric hallucinations.

Nguyen ND¹, Osterweil D, Hoffman J.

Author information

Abstract

Charles Bonnet syndrome (CBS) is characterized by recurrent or persistent complex visual hallucinations that occur in visually impaired individuals with intact cognition and no evidence of psychiatric illness. Patients usually retain insight into the unreal nature of their hallucinations.

...

So at least my doctors are convinced I’m not actively psychotic—that is some consolation. 

And that’s the current story.  But if I have learned anything, it is that “diagnosis” is a treacherously fluid term, so that’s just what I’m rolling with for now.  And (Mike, Colin, Evan) don’t even think about standing in my blind spot and making faces at me; not cool.