Kelley Remole: A Brain Floating in a Sink

Neuroscientist Kelley Remole begins suffering from mysterious and paralyzing headaches.

Kelley Remole, PhD, is the senior director of scientific programs at Columbia University's Zuckerman Mind Brain Behavior Institute. She worked previously at the American Museum of Natural History and has consulted on a number of projects, including Neurodome, a planetarium show about the brain. She has been nationally recognized for her science outreach work and has been featured on local and national television. 

This story originally aired on December 7, 2018 in an episode titled “Science Gets Personal.”

Story Transcript

It was a brisk Saturday in October a few years ago.  I was shopping for winter coats for my children.  They're ages one and three at the time.  It was a nice way to spend a weekend after a long week at work. 

I’m a neuroscientist by training.  I’m an educator by vocation.  And I've always been fascinated by the brain.  Ever since childhood, the way this piece of biology in our head determines everything about who we are, our movements, our feelings, our dreams. 

And as I was in the store balancing a diaper bag and my children toddling about and had some hangers of little jackets dangling from my wrist, I coughed three times.  One, two, three.  And I was struck with a headache so painful I almost fell to my knees.  It felt like razorblades were being dragged across the back of my head from the inside. 

With the rising sense of panic, I realized I had to get out of the store.  I dropped the jackets in a puddle on the floor and I got my kids safely outside to my car.  I strap them in so I knew they’d be safe and I got myself into the front seat of the car.  I reclined back, not sure what to do next and, quickly, the headache kind of went away leaving me shaken but safe enough to drive home. 

That weekend passed in kind of a haze of headaches.  I wasn’t quite sure what was going on.  At one point, my little son, a year old, was crying on the floor and, out of habit, I reached down and scooped him up and brought him in my arms to comfort him and I was struck by another one of these headaches so painful it brought tears to my eyes.  I passed him to my husband Lucas for him to comfort him and I went to lay down to get rid of this headache.  

My husband and I talked about this.  We’re confused but not quite sure.  He's an anesthesiologist physician but he doesn’t know much about headaches. 

So Monday came around.  I went to work, because I always go to work on Mondays, and I saw a neurologist in the afternoon.  I explained to her these weird headaches.  I explained to her what was going on.  

She said, “Okay, let’s do a neuro exam.” 

It’s the kind of exam where they test your hearing, your vision.  She had me stand on my tiptoes, walk in a straight line.  Heel-toe, heel-toe.  Stand straight up and down with my feet together and my eyes closed.  Everything was normal.  She ordered MRI, just in case, and sent me home. 

A few days later she called me.  There had been a finding.  I was kind of taken aback and she explained that the back of my brain, this region called the cerebellum was lower than it should be. 

Picture this.  Think of a brain floating in a sink.  The skull is the sink and the pipe leading down is the spine and the brain floats in this sink.  The liquid is called cerebrospinal fluid and it runs back and forth between the spine and the brain, around the spine and the brain, up and down.  And just in the back of my brain, the cerebellum was almost plugging that drain a little bit.  

She said, “Some people are born with this.  It’s called chiari and they may never know it.  It doesn’t even give them problems, but you should probably follow-up with a neurosurgeon just in case.” 

So I called my husband and he started Googleing, because even physicians use Google.  He learned what he could about chiari, basically what the doctor had told me.  But there were pieces of my headaches, my symptoms, my family history that wasn’t quite adding up. 

He started searching medical databases.  He found that there was this kind of rare condition where people can develop a leak out of the lining of the pipe out of their spine and the cerebrospinal fluid can leak out of this little tear.  It kind of matched what was going on but it didn’t actually cause chiari, so that didn’t quite make sense. 

But then he kept reading and he looked in the medical literature, he saw some case studies.  There were some cases where people had a leak and then they had chiari.  It mattered whether they had chiari before or chiari after, because if you do a surgery for chiari then you're opening up the drain but that actually makes the brain sink more, so obviously you don’t want to do that. 

This was all confusing and I was still feeling worse but I was still going to work.  I was reducing my hours, still going in for important meetings.  I remember one day I went in and I was sitting around the conference table with my boss and other senior leaders and I was getting uncomfortable in this meeting.  Every time I shifted in my chair, I was kind of getting a headache but it was tolerable so I kept going.  I didn’t say anything. 

Then I coughed once and my head just exploded in pain.  I just remember pushing back and stumbling out of the room, embarrassed but doubled over in pain at the same time.  My boss helped me find an empty office.  I lay down on the floor in the carpet, my legs under the desk, and just lay there recovering. 

So I stopped going into work after that but I kept working from home.  I would take phone calls lying flat on my bed, not even with a pillow because the more horizontal I was the better.  I would type with my laptop on my hips trying to kind of see the screen but I would crane my neck and it’s kind of a mess.  But I kept doing this and waiting for this appointment with the neurosurgeon that the neurologist had recommended. 

Finally, I get in to see the neurosurgeon and explain to him what happened.  My husband is there and I’m kind of getting confused with the details at this point because my mental state was just not what it should be. 

He listens and he looks at my MRI and he says, “Well, yeah, that looks like a chiari.  Let’s do a neuro exam.” 

So we did the same thing, like vision, hearing.  He had me stand on my tiptoes but this time my legs wobbled like crazy.  He had me walk heel-toe, heel-toe and this time I couldn’t.  I stumbled.  My hands flew out as I tried to find my balance.  This time when he asked me to close my eyes and stand, I swayed so much that Lucas had to catch me.  It was clear I was getting worse and fast. 

He admitted that that was strange and Lucas outlined this theory that what if it’s a leak and what if it caused a chiari.  The neurosurgeon, this is like a really eminent neurosurgeon.  I watched him on New York Med, that reality show about physicians, and he had taken a tumor the size of a baseball out of this kid’s head and the kid survived.  It was a great story.  Like this guy is at the top of his field. 

He's like, “Okay, that’s a nice theory but you're an anesthesiologist.  Thanks but no thanks.”  And he said, “Really, without a scan of your brain before you got sick, we can’t really jump to conclusions.” 

I sat up from my chair and I was like, “I do have a scan of my brain from four years ago.  I was involved in this education program about the brain at Neurodome and I was the brain model.  So I have this scan from this other institution.  It’s across the state.  It was four years ago.”

And he's like, “Oh.”  Then, really quickly, he starts typing in his computer.  Click-click-click and it’s like CSI, brain scan, and he brings up my image from four years ago.  There, in front of us, side by side it’s so obvious that even someone without a medical degree could see my brain had changed in the past four years. 

He's clicking through this in his head and he turns to me and he's like, “I've never seen a case quite like this before.”  He said, “This is serious but you're unlikely to die.” 

I’m like, “You're the doctor here.  You're the one on TV taking out these tumors and you’re telling me (a) you've never seen this before and (b) you can’t rule out death.” 

So I’m struggling with this and he says, “You can’t keep working.”  So I take his word for it this time.  I didn’t listen to my husband but I listened to this doctor. 

He didn’t have a whole lot to offer me.  We did some scans at Columbia to try to find this leak.  Inconclusive.  Over the next few months, I went to a series of doctors in the local area, different institutions, different departments, different people all looking for answers.  And every time it was like, “Oh, maybe it’s my chiari.” 

My husband would be like, “No, maybe it’s not.”  So it’s back and forth, and let’s look for a leak, we couldn’t find a leak.  We tried to treat for a leak but inconclusive.  A little bit helpful.  Not really. 

So I found myself the headaches were getting worse and worse.  I was getting a hundred a day.  I couldn’t lift my kids.  I knew how to not do that as painful as that was, but I couldn’t avoid the sneezes and just rolling over in bed.  And all of these things would cause this 30-second calamity in my head.  So I had to keep searching for answers. 

All the doctors said, “You really need to see some experts in this.  There aren’t that many but there is a group at the Mayo Clinic in Rochester, Minnesota.  These are the doctors that literally wrote the book on this.” 

So that’s where I went for a series of visits for over a few months and they did some tests and they did their imaging.  They were scratching their heads and admitted they were really working on the edge of medical knowledge here, but I was desperate. 

Finally, we got to the point where they said, “We only have one last test, really.  One last procedure to give you to try to treat a leak.  We don’t really know where this leak is, if it’s a leak, but we can do this test.  There's a lot of radiation because it’s a CT scan.”

And I said, “Do it.  I got to do something.”

So they anesthetized me.  They identified 22 spots along my spine that were weak and could have a tear in them.  They injected them with blood, my own blood, and a little bit of biological glue and they sent me home.  I waited and I waited and, over the next days, over weeks and months I started to get a little better.  I started to add back my home routines.  I started to engage more with my kids, with Lucas.  I started to add back work very slowly, mostly from home.  But really started to feel a little bit more like myself. 

But it wasn’t enough.  I still wasn’t picking up my kids.  I wasn’t engaged.  I wasn’t back at work like I wanted to be, and so I went back to the Mayo Clinic. 

They said, “Well, we can do this but only one more time.  Because of the amount of radiation, because of your age, your body can’t take that much radiation without putting you in a very risky zone.”

I said, “Look, it’s all I've got.  Let’s do it.”

So on a cold October day, about a year after those first headaches, I went in and they did it again.  They found those weak spots and they injected them with blood and glue and they sent me home.  And I waited and I waited. 

Not over days but over weeks and over months I started to feel really truly better.  One day, my little guy, who then was two-and-a-half, was crying over some slight his sister did to him.  I picked him up, I scoop him up into my arms and I didn’t get a headache this time.  I snuggled him into me and I said, “It’s going to be okay.” 

This time, instead of tears of pain, I had tears of joy because I knew that what was so important to me was with me all along.