Living Well Missing a Part of Your Brain: Three Women’s Stories

I am fascinated by neuroplasticity: the brain’s remarkable ability to adapt after it suffers from illness or injury. Recently, I came across two stories of women whose ability to function had not been severely affected by the absence of chunks of their brain.

Both stories are documented in the scientific literature. The third involves a woman with whom I am extremely close.

The Case of the Missing Cerebellum

When a 24-year-old woman in the Shandong Province of China was admitted to the hospital complaining of nausea and dizziness, she reported that she’d had difficulty walking steadily for much of her life. Her mother observed that she hadn’t begun walking until she was 7, and she didn’t speak clearly enough to be understood til a year earlier.

It’s a wonder this woman could walk at all. A CT scan revealed that the place in her brain where the cerebellum should have been held no tissue—none. Only the cerebrospinal fluid that protects the brain from disease and shock was evident.

The cerebellum—sometimes referred to as “little brain,” translated from the Latin—is a small area beneath the brain’s left and right hemispheres. It accounts for about ten percent of the brain’s volume. However, it’s a dynamo structure, accordion-pleated in a way that if the tissue were ironed out, it would be more than three feet long and four inches wide.

Within the cerebellum’s dense folds nestle fifty percent of the brain’s neurons. That woman was missing a hell of a lot of neurons.

According to New Scientist, which carried this story, “the woman joins an elite club of just nine people who are known to have lived without their entire cerebellum.”

We depend upon the cerebellum for balance and control of our voluntary movements, such as reaching out to grab a banana, as well as for speech. In view of her problems walking and enunciating, you may question my saying this young woman lived well.

But other people with cerebellum problems have been found to be severely mentally impaired or epileptic, and some have died due to fatal buildups of fluid in the brain. This woman had “only mild to moderate motor deficiency, and mild speech problems such as slightly slurred pronunciation.”

In conjecturing how her brain adapted to missing its entire little brain, her doctors suggested that the cerebral cortex may have jumped in and taken on extra work.

Scientists are continually studying the cerebellum, which apparently has existed among vertebrates for so long that Tom Stafford, writing for the BBC, observed: “the sharks that swam when dinosaurs walked the Earth had cerebellums.”

“I Have an Interesting Brain”

That’s how a woman identified only as EG described herself in 2016 to two MIT scientists she contacted after reading that they were studying the way the brain reacts to music.

Her brain, she wrote, is missing its left temporal lobe. As that area is believed to be essential for language processing, you can already see that this reading/comprehending/writing woman is defying some mammoth odds.

Though the scientists she emailed realized she was study-worthy, that wasn’t their area of interest. They referred her to a cognitive neuroscientist at MIT, Evelina Fedorenko, who studies languages.

According to an article published in Wired last year, “It was the beginning of a fruitful relationship.”

Fedorenko and her team published their first scientific paper about EG’s brain in Neuropsychologia, and they expect to publish additional studies.

EG, from the state of Connecticut, is now in her mid-fifties. How hindered has she been by the absence of her temporal lobe? Not enough to prevent her from obtaining a graduate degree, learning to speak Russian so fluently that she’s had dreams in this second language, and doing well in her chosen career.

She learned how interesting her brain is when she had a scan for some unspecified reason in George Washington University Hospital in 1987. The physicians theorized that she’d had a stroke when she was a baby. Like the woman missing her cerebellum, the scan showed only cerebrospinal fluid where the temporal lobe should have been.

The knowledge, she said, “creeped me out,” and for more than ten years, she told only her parents and two very close friends.

Her experiences with physicians during this period had been somewhat “interesting” as well. They told her that her brain “made no sense.” One doctor, she recalled, said she should be having seizures (she wasn’t). He also said she should not have a large vocabulary—and “he was annoyed that I did.” When the MIT team tested her vocabulary, she scored in the 98th percentile.

It’s surprising that after all EG’s frustrating experiences with physicians, which she said “pissed me off,” she sought out the MIT researchers. It’s not surprising, though, that Fedorenko and her team approached EG differently because what evolved was clearly a collaboration between researchers and subject.

EG was pleased that Fedorenko “didn’t have any preconceived notions of what I should or shouldn’t be able to do.” Fedorenko was delighted to have a willing subject to further her team’s studies of the various brain regions’ involvement in learning and understanding language.

A great deal is unknown about the functioning of various parts of the brain and how they work together—how the “system” develops. In terms of language development, Fedorenko pointed out that gaining greater understanding would require scanning the brains of children ages 1 to 3, when such development begins and progresses. But such technology wasn’t available.

EG was, therefore, a dream come true. She offered a “cool window” to learn how the brain tissue that she did have divvied up the tasks, enabling her cognitive functioning to be so high. That window showed her language facilities had simply shifted to her brain’s right hemisphere.

This finding validated the success of a surgical approach to help some children with severe epilepsy. Fedorenko observed that those who undergo a “hemispherectomy”—removal of the half of the brain where the seizures arose—have normal cognition.

“…That suggests there’s a lot of bits in our typical brains that are redundant…which is—engineering-wise—a pretty good way to build the system.”

Tom Stafford provided more details about that engineering, describing the work of Gerald Edelman, a Nobel Prize-winning neuroscientist. Edelman found that particular physical aspects are undergirded by multiple genes. “He called the ability of various different structures to support a single function ‘degeneracy.’”

I’m not sure why he chose that term.

Stafford wrote:

“And so it is with the brain. The important functions are not farmed out to single distinct brain regions, but instead supported by multiple regions, often in similar but slightly different ways. If one structure breaks down, the others can pick up the slack.”

“…Not Worth Mentioning…

The third woman, ATB, with whom I’m close, said that as far as she knows, the first time her cerebellar anomaly was noticed on a brain scan about ten years ago, doctors apparently thought it was so “unremarkable, in medical terms,” that they failed to mention it to her. In fact, they didn’t seem to link it to the symptoms that had led her to call for emergency assistance.

As she’d left work early one evening, she said her legs became extremely wobbly and the world was spinning. By the time she reached her car, she thought she was about to faint. She called for help.

The ambulance took her to a major hospital, where she had a brain scan, blood work, and multiple other tests. After an overnight stay, she was released, told they could find nothing wrong, and advised to visit her primary care doctor.

That physician attributed the incident to a “perfect storm caused by a virus and a migraine headache.” ATB had been experiencing migraines since she was a young woman. Her doctor’s assessment seemed reasonable.

Fast forward to 2016. She was exercising in her gym on a seated elliptical machine, and she recalls engaging in a conversation with a woman who was equally “exercised” about the forthcoming Presidential election.

After pedaling longer and faster than usual, ATB left the gym feeling dizzy, with severe pain at the base of her skull. When the pain persisted for a week, she visited a neurologist, who ordered a brain MRI.

That MRI read, in part:

“The superior lobe of the right cerebellar hemisphere is hypoplastic/absent. This may be the sequela of a previous injury or a congenital/developmental variant…No acute intracranial process.”

The neurologist conjectured the pain was due to a persistent migraine brought on by the exercise. She felt physical therapy of ATB’s neck might be helpful, but referred ATB to a neurosurgeon to make sure such therapy would be safe.

ATB, learning for the first time that she was missing a piece of her brain, was eager to hear what the neurosurgeon would say.

She recalled that this patient and kindly man assured ATB that if the brain part was lacking due to an injury, she would have been stumbling around. He felt certain it was congenital, and the brain’s amazing adaptability had enabled her to lead a life so normal and active that learning about her brain anomaly had been a shock.

As Tom Stafford observed, though the cerebellum is best known to control movements, “other areas of the brain such as the basal ganglia and the motor cortex are also intimately involved in moving our bodies.”

ATB, knowing that people are living well with far worse brain conditions, has no compunctions about sharing her story.

It happens to be my story. C’est moi! ATB is Annie The Blogger.

I’m comfortable knowing that my “little brain” is littler-than-normal. I’m also eager to learn more about folks like me who are living well despite missing parts of their brains in order to further the understanding of brain functioning.

Just recently, neuroscientists learned that the cerebellum is central to remembering emotional experiences—both positive and negative—and that there’s greater communication between the cerebellum and the cerebrum than was previously known.

Studies to understand how the brain works are at a major threshold. The National Institutes of Health is providing grants for a BRAIN Initiative (Brain Research Through Advancing Innovative Neurotechnologies), backed by $500 million over five years, to explore the entire human brain—how it’s affected by diseases, “the breadth of human development and aging,” cell function to aid in developing treatments, and much more.

I’m grateful that I’m fairly well-coordinated, speak comprehensibly most of the time, and have no trouble touching my finger to my nose or my heel to my knee—common neurological tests for cerebellar disorders.

Nevertheless, the parts of my brain that aren’t missing would like to know what I may be missing because of my missing superior cerebellum lobe. I’d welcome the opportunity to participate in one of the BRAIN Initiative studies. However, I’m quite sure researchers would not be interested in a brain that clinicians who have documented its missing piece have deemed “unremarkable.”

Annie

44 thoughts on “Living Well Missing a Part of Your Brain: Three Women’s Stories

  1. Fascinating cases. Certainly the brain does have an ability to assign other parts of itself to take over functions when the area that normally does those functions is damaged or absent, and this “plasticity” is more effective the younger the person is. So in cases where something is missing right from the start, the newborn brain is in the best position to compensate for it.

    EG’s case is striking because the language function of the left temporal lobe is one of the few brain functions which isn’t bilaterally symmetrical — that is, the corresponding area in the right temporal lobe doesn’t similarly handle language. As far as we know (from what I remember from my own reading, which may be out of date now), that area of the right temporal lobe doesn’t do anything at all, although experiments involving artificially stimulating it have produced some intriguing results. I suppose it’s possible that EG’s brain reassigned the language function to the right side from the left, since the right side was “available”.

    Thank you for including your own story. I’m glad that the brain issue evidently did not lead to any limitation of blogging ability.

    You might want to get in touch with the BRAIN Initiative people. “Unremarkable” is in the eye, or cerebellum, of the beholder.

    Liked by 3 people

    1. Thank you, Infidel. Based on my admittedly limited knowledge, I think it’s unlikely that the corresponding area of the right temporal lobe doesn’t do anything: neuroscientists may simply not have learned what it does–yet.

      It’s interesting that the literature refers to the right temporal lobe as non-dominant *in most people,* suggesting that in some, it’s actually dominant. And the lobes mirror one another (the right temporal lobe apparently helps our memory of non-verbal information, such as music). It does seem that EG’s brain took advantage of the fact that her right temporal lobe was “available.”

      It’s just fascinating that all these brain redundancies are built in, allowing people like EG and me to function seemingly without impairment. Though who knows? Maybe I could have been a rock climber!

      I just may check to see if there’s any interest in my missing cerebellum lobe…

      Liked by 1 person

    2. FYI, Infidel: I contacted clinical trials.gov, but the only relevant study of “cerebellum hypoplasia” was completed—on newborns…in France.

      I’ll check back occasionally as the BRAIN Initiative grants are being awarded.

      Liked by 1 person

    1. Thank you, Neil. I’ve never had any reason to consider it a handicap–but what do I know? Maybe your editor on your imminent best seller will feel there’s a post-blog audience eager to hear my story. What do you think?

      Liked by 1 person

  2. I’ve suspected this sort of thing for years. My guess the lack of males maybe associated with finding one with a whole one to start with. In my own case I thought I had burned through the two kidney allotment but the scientists had found a tertiary backup in my belly. We might all have a backup brain.
    If you get in a study tell them that my grandfather suggested looking in the butt. He always told me that sitting on it was my problem.

    Liked by 2 people

      1. I find myself in this surreal space. I’m like dependent on a reliable source of electricity and a specialty washing machine. Yet I’m as healthy as I’ve ever been. I have a nutritionist, a social worker looking after the transplant work and a nurse on 24/7 call for a problem 100% my fault. Coming up on a year ago my 1970 Triumph motorcycle was stolen. It miffed me. Three years ago I would have roamed the neighborhood armed looking for it. I’ve always been lucky but now you can understand my interest in is it good/is it bad.
        NoMB but I think you should enter into studies of your condition. There are only 8 billion people here and it sounds like you are in a very small subset of them.

        Liked by 1 person

      2. Glad to hear you say “I’m as healthy as I’ve ever been” *and* to learn that you’ve sufficiently matured in three years so that you’re not inclined to get into a gunfight over stolen property (!). I don’t believe that would have been good for your health.

        Liked by 1 person

      3. You might like that that this bountiful life was brought to me by legislation signed into law by the evil Dick Nixon. Is it good or is it bad is a very cool labyrinth. Which I entered again when I looked up the spelling for this word, what we don’t know!

        Liked by 1 person

  3. Wow, Annie….I found the whole post fascinating….especially the ending. I wonder how many people are missing parts of their brain and don’t know it as other parts have compensated, brain scans being fairly uncommon tests unless the patient is symptomatic. I remember reading a book on this years ago, by a female brain scientist who had a massive stroke at 37 and recovered. Thank you for sharing your story.

    Liked by 1 person

    1. I’m glad to hear that you found it all fascinating, Joni. I certainly do. And you raise an interesting question. As you know, there are often “incidental findings” from diagnostic tests. Maybe that’s why no one bothered to mention my missing lobe in the first scan. Its absence may truly be “unremarkable.” In that case, the BRAIN researchers won’t be interested at all.

      Liked by 1 person

      1. It is a bit of a puzzle why that was noted as unremarkable initially. Was it a smallish area? If it says hypoplastic/absent, maybe the actual area missing is small but the rest of it is there but just underdeveloped? I don’t know anything about brain scans or radiology though. Re the gentleman above who says he had a third kidney ie the peritoneum. I have seen the odd patient on peritoneal dialysis which can be done at home with special equipment. When I was a student I developed a kidney stone but after the initial episode, I didn’t have any more pain as the stone was stuck in the renal pelvis (the end part of the kidney that funnels down into the ureter and then to the bladder) and blocking it, but I didn’t seem to have any problem with kidney backflow – it was working fine. After a couple of months of drinking excessively, the urologist (a different one than the first) said it to come out before it caused kidney damage, so I was booked for surgery, during mid-terms as I recall. He ordered an IVP scan and it turned out that I had two renal pelvises (funnels) in that kidney – a congenital abnormality, which turned out to be a good thing in my case! Now that they order CAT scans so frequently I wonder how many other things turn up that are not worth noting, although I always thought radiologists were obsessively thorough, as would be expected. .

        Liked by 3 people

      2. I think the hypoplastic/absent designation is to cover bc the radiologist couldn’t see anything where the superior lobe should have been.

        Anyway, thanks for your story, which is sorta remarkable in non-med parlance. I know that lots of things show up that radiologists term “incidental findings”—not clinically significant. But they usually mention them for the record.

        Liked by 1 person

    1. You’re most welcome, Jill. As we gain greater understanding of the brain’s “system,” I think we’ll find even more to marvel about. The concept of disparate parts of the brain being involved in its various functions seems—well—“remarkable.”

      Liked by 1 person

  4. Another interesting blog. Reminded me of some of Oliver Sack’s works.
    However, I must admit I was disappointed in the overall essay.
    “Living Well, Missing part of your brain: 3 women’s stories” I expected an informative essay on the lives of Sarah Palin, Marjorie Taylor Greene and Lauren Boebert. Perhaps, another time?

    Liked by 3 people

    1. Ms Annie often chooses to overlook my attempts at humor i.e. the motorcycle and the butt. My grandfather knew he was off by a few inches. Motorcyclists view the AR-totters as tiny peckerwoods. What size is your bike. The majority of scars and broken bones world-wide was explained wonderfully by Chris Cagel.
      The three lives you mention have a heavy firearms fetish. Can we be sure they could pass that new “prove your a girl” law?

      Liked by 1 person

      1. I have had a lifelong interest in WHY, followed closely by what’s in it for me. Discovering a person with space in their head who sails over every attempt at admittedly low brow humor. While nothing appears to be missing it seems natural to prob. “Life is worth living as long as there’s a laugh in it.”
        ― Lucy Maud Montgomery

        Liked by 1 person

      2. Aw, Richard; you’re finding I’m missing the humor gene. Sad. No, I’m capable of silliness. When I finally add categories to my blog, you’ll see a section on humor. And I did play along with the motorcycle gambit. Just not a big fan of butt stuff.

        Liked by 1 person

      3. Gluteus Maximus is the largest and heaviest muscle in the body. Humor with a sexual bias. It is the boys who laugh loudest at fart jokes I’ve noticed.
        The motorcycle thing I find unnerving. A Triumph owner can always be found at the motorcycle repair shop on any given day, sometimes everyday. On a day I was there an owner and the repair tech were tuning the guys bike and he would take it for a spin around the parking lot with enthusiasm. When a car decided to bypass the signal cutting through the lot. There was a collision and the biker took to the air flying over the car and sliding about 25 feet on his Glut. He immediately jump up and began crying “my bike, my bike”. Many riders prioritize bike over life dreaming of being a 100% er. I have no explanation as to why my loss did not put me down.
        Do you now or have ever felt that you were missing something or thought differently than those around you?

        Like

      4. In writing this post, for the first time I realized that I don’t know what I might be missing bc of my missing superior lobe. I might be more “superior” in some regard—or perhaps I’d have an appreciation for grandpa butt jokes. Or perhaps I wouldn’t get migraine headaches. Who knows? Interesting to ponder.

        Liked by 1 person

      5. Knock on wood, I have never experienced a migraine but a long life and two wives going through menopause has left an appreciation of ignorance. Growing up did you feel different? Did anything resonate when you received your diagnosis? Did knowing cause a change? The post suggests an alleviation when you discovered fellow travelers.
        Did you not have an older brother? How could there be such a giant hole in your humor oeuvre?

        Like

  5. Neuroplasticity is fascinating. I remember learning about different types of brain trauma and studies of different outcomes, from entirely different personalities, to no noticeable change. My inner wannabe Psychologist loves it, but I do feel for those who’ve had brain trauma or damage of some kind because the effects can be tragic and affect every part of their lives.

    I’m pretty sure I’ve never come across someone with no tissue in the cerebellum… how is that even possible? Wow. And the lack of a left temporal lobe should, in theory, have a remarkable impact in terms of reading and writing impairment at the very least. The fact that this woman is clearly highly intelligent and capable of doing all the things that lobe should be doing, but doing it all without it, is truly amazing.

    As for the final woman, ATB, I’m livid at the doctors who didn’t think it important enough to even tell her about it. At what point does an anomaly warrant telling the patient? The very first moment something even slightly different is found, in my opinion, especially when there are symptoms. That’s awful. Her experience shows the power of a human brain to learn and grow because if the damage had been during her adult years rather than congenital, it could be a whole different story.

    Thank you for sharing these fascinating and eye-opening stories, Annie.

    Caz xx

    Liked by 4 people

  6. I found an interesting article, “Thought Process,” in the January 16 issue of The New Yorker. Author Joshua Rothman explains that human brains work differently–some visually, some verbally, and some neither visually nor verbally. My take-away is that brains can work effectively in more than one way.

    Liked by 1 person

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