Jul 11, 2018 · 51 comments
Susan (Washington, DC)
I noticed that this young man and the patient in previous article (the woman who couldn't stop vomiting) are both very blond and pale. Was this an art directorial decision to style and photograph them this way or could their appearance reveal something about their condition?
rc (NJ)
Hi, I figure James might be reading these comments so I first want to say that I hope you feel better, and that with everyone's help here, I hope a solution can be found and treatment started. I have had almost all of James' symptoms at one time or another because I have multiple sclerosis. The difficulty dredging up words, the fatigue, the headaches, the tingling -- it all happened to me when I had a lesion in my brain stem (I've had them elsewhere, too, but this place was the worst in terms of symptoms). That particular lesion also caused double vision, and muscle weakness on the left side of my face. It was in a really bad spot, neurologically speaking! I think James' face isn't symmetrical, despite the neurologist notes. His right eye is a bit off to the right, and his mouth isn't symmetrical when he is slightly smiling. Maybe James could find some older photos and compare them to more recent ones. He should rule out MS, which was linked to head injuries in a Harvard study last year. Do another MRI with and without contrast of the brain and cervical spine. I also think it's possible, as someone else has said, that he might have a small tear somewhere that is causing his brain to sag and squish his brain stem a bit when he stands and jumps. It would cause the same intermittent symptoms. He said his legs start tingling when he stands, and the sloshing is worse when he moves. A standing CAT scan or MRI might show changes in the brain structure. Good luck, James!
FunkyIrishman (member of the resistance)
''This kind of minor traumatic brain injury is something medicine has only recently begun to focus on. '' - and there you have it. Even in advanced brain surgery to repair something, the doctor (with somewhat general idea of what motor functions are where) has to carefully prod (with minute precision) areas that may have damage in the tissue. We simply do not know all of the chemical sequences that occur, with many diagnoses as hit and miss. It seems to me (after reading carefully) that some symptoms are occurring from illnesses after the initial hit, (like repetitive motion or continued concussing of the brain) My best guess. All I can say is I hope he gets better and has the patience to go through massive amounts of tests. He might lead to other discoveries, but he might also have to lead a very restrictive life. Good luck lad.
marty (andover, MA)
A couple of quick thoughts: He was still able to get into Yale...and, for the vast, vast majority of people, the costs involved with all the testing and doctors' visits, etc., would have been prohibitive or else bankrupting. It appears he must have had a good insurance plan through his parents.
Disillusioned (Colorado)
Diffusion MRI would be highly useful here, preferably of the anisotropic variety.
John (KY)
Thanks for raising awareness of diffusion MRI (isotropic and otherwise.) I hadn't heard of it, at least, but I'm not a physician. I want to reiterate that the patient is better served when his caregivers have more information about his condition. If there are promising imaging techniques that have not been employed, decisionmakers may be seeing only a small portion of the whole picture.
Brian (Foster City, CA)
Hello? Anybody here thinking "cord compression d/t cervical spine intersegmental instability?" Distal and bilat limb dysesthesias, brain/fog? Cervical hyperflexion/extension? Neck x-rays (7-view Davis series) to look for possible (anterior spinal ligament) tear instability that would not otherwise show on static films? How do I spell relief? C-H-I-R-O-P-R-A-C-T-O-R. Repeat class: "Chi-ro-prac-tor." Verrry good! Now, don't forget to bring your notes home for your parents to sign so you can go on that field trip! Oh. And Dr. Sanders-come sit in the front of the class and try to take better notes. You're apparently not seeing clearly.
Ted (Rural New York State)
I didn't read all the medical documents here after watching the video and reading the article. And as a complete layman from a medical perspective, I have no specific relevant credentials to discuss medicine. But I just wonder if - and, if so, how many previous times - this young man has taken "blows to the head"? Specifically, as in "heading" other soccer balls over time. And/or - during his swimming activities - diving head first into water. Etc. Just thinking maybe his symptoms might be longer term - and perhaps caused by earlier events - than just "after [this particular] soccer ball to the head". In any case, I hope the "correct solution" is out there somewhere, and that he gets better as soon as possible.
Ashley (Vermont)
im not a doctor - but rather a patient. i had a (serious) minor TBI when i was 16 - 13 years ago. i was a mostly straight A student, although very shy and kept to myself. after the head injury - which was actually two injuries over two days - one falling face first about 8 ft while skateboarding and the next day being landed on snowboarding (i got checked out the day before - everything "normal"). after the second impact it was lights out for about 5 mins or so before i woke up to a crowd and ski patrol surrounding me. had a complete change of personality from that day forward. in the ambulance i threatened to kill the EMT worker when they wanted to put an IV in. ive had anger problems (blackout rages), trouble focusing, emotional problems, migraines, bouts of insomnia since. my grades slumped slightly, but school was too easy for me to begin with so the changes, academically, werent that noticeable. went to college, struggled, but succeeded in getting a degree. tried to work in my field, cant do it at all. cant stay focused for more than a few minutes at a time, cant sit still, cant keep up with simple tasks in life. the best diagnoses i can come up with is executive functioing disorder... but it doesnt matter anymore. im done trying to prove my head injury is the cause of (nearly) all my problems, all my tests came back "normal". the tests are meaningless, IMO. thank god this kid has a caring dr, everyone ive ever dealt with told me im making it all up and dismissed me. sad
simon sez (Maryland)
Ashley Your symptoms are classic for moderate concussion. I know, I had the same thing happen and I have treated patients for over 25 years as an osteopathic physician using osteopathic cranial manipulation for such issues. I suggest that you contact the Osteopathic Cranial Association and use their Find a physician to get help. Even years later the effects, if not treated, can persist and color our experience of life. There are several very experienced physicians in your area who do this work. Good luck. https://cranialacademy.org/find-a-physician/
Sarah (Silicon Valley, CA)
This reminds me of symptoms I had when withdrawing from the SSRI Paxil several years ago. In particular, the "brain sloshing" sensation was unbearable. I don't know if science has figured out the cause of these common symptoms of SSRI withdrawl, but I believe the theory is that it results from altered levels of neurotransmitters in the brain. One article I read suggested that discontinuation of SSRI's causes low levels of the GABA neurotransmitter (which slows down neural activity) and this could result in neurons overfiring. The article speculated that the brain sloshing or "brain zaps" that people report are actually small seizures. Perhaps a brain injury could affect neurotransmitters in a similar fashion. Unfortunately there is no treatment I'm aware of for SSRI withdrawl symptoms.
Aaron Walton (Geelong, Australia)
In my practice as an infectious diseases physician, I am regularly confronted with patients with patients who have a constellation of somewhat vague, but nonetheless quite troubling symptoms and a completely negative diagnostic work-up. It is often the case that they can pinpoint the onset of their symptoms to a specific acute illness or injury - such as the concussion described in this case. Over time, I have reached the conclusion that such unexplained syndromes can result from a derangement and hypersensitivity of the sensory system that monitors physical health and well-being. I describe it as a kind of iNTERNAL pTSD. In this case, the concussion would be said to have triggered hyper vigilance with regards to internal sensations triggered by head movements causing normal stimuli to be perceived as unpleasant. The fear that some serious disease is lurking, eluding diagnosis only exacerbates the tendency to monitor sensations for signs of trouble. My advice to the patient would be to take reassurance from the fact that he has been exhaustively investigates and no abnormality has been found, and I would suggest that the best way to find relief from his symptoms is to ignore them. In particular, I would encourage him to take up running again. There is no conceivable way that running will injure him, and I suspect that if he can train himself to run despite whatever discomfort it causes, the discomfort will gradually abate.
TK Sung (Sacramento)
This sounds too much like "it's all in your head, so ignore it" advice. There are myriads of hyper-sensitivity syndromes with acute onset -- PTSD, CRPS, CFS just to name a few -- and indiscriminate exposure to the stimuli sometimes can make the condition chronically worse. That possibility should be considered even if the young man's symptoms are not as disabling as some other syndromes.
Chiz (Christchurch, NZ)
This sounds, at least in part, like an inner ear disorder but mechanical rather than neurological. The symptoms of Superior canal dehiscence include brain fog but also include a number of other symptoms not apparently present so it probably isn't SCD but maybe it is something similar.
Luci (San Diego, CA)
For such a strong impact to the back of the head, you'd expect some damage to the frontal lobe and/or the occipital lobe. But those were probably the first places they looked. Curious about whether scans of the brain were examined for damage to the meninges. Maybe the damage is not in the brain itself, but in areas that surround and support the brain.
John (KY)
I am not a physician. I'm wondering whether the propagations of shock fronts within the patient's skull might have caused localized damage of degree varying with position. Might a PET scan reveal pathologies that didn't show on CT or MRI?
Heather (San Diego, CA)
This sounds a bit like the condition known as "brain sag": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771686/ https://www.eurekalert.org/pub_releases/1998-07/UoCS-BCDI-010798.php Since scans have revealed nothing, perhaps he has a very minor tear or brain stem herniation that is allowing a leak of spinal fluid that is causing his symptoms. A minor tear could be aggravated by movement and could appear to resolve with rest. Is there any position (such as lying with elevated feet) that aggravates his symptoms? If so, a scan could be done when his symptoms are provoked and that might be able to capture the source of his problem.
lkent (boston)
I also suffered "brain slosh", as well as "exploding head" and "brain fog" and the problem of jerking awake when "falling" asleep because I literally feel like I am falling.
Dee (Anchorage, AK)
I thought some of the statements on the medical notes were overstating a definitive diagnosis i.e. must be migraines, must be ADHD, etc. They can't find anything physical due to the limitations of their equipment so they imply the noises in the patient's head are all in his head. Meds are prescribed to try to see if they will treat symptoms without knowing a cause. Beta blockers run the risk of mood disorders and will alter his brain chemistry. Medical imaging has limits in that the patient lies still but this patient is experiencing a distinct phenomenon while moving. What's needed is a scanner that would attach to his head and could record data while he hopped and recreated the sloshing. Hope someone out there can help him.
ChristineMcM (Massachusetts)
I'm fascinated by this new column and eventual partnership with Netflix, because of an amazing true story made into a Netflix film called "Brain on Fire," I watched recently. It was mesmerizing because just as the patient--who was developing increasingly disturbing symptoms mimicking severe mental illness--was about to be committed to a mental institution, a young physician was able to persuade her former medical professor and mentor to assess the patient's brain imaging studies. The upshot? The patient was suffering from a rare autoimmune disorder that was literally frying her brain. It took 8 months to rehabilitate her (she was in a catatonic state before the final physician diagnosed her) but the diagnosing physician was so moved he founded a clinic dedicated to the diagnosis and treatment of the newly identified disorder. The most inspiring part occurred at the end of the film, in learning that thousands of patients had been properly diagnosed, spared tragic lives in long-term mental institutions. I have no clue what James has, but have no doubt that since there was a triggering event, his symptoms are genuine. I also hope a writer I greatly admire from the Boston area, neurologist Lisa de Genova (author of Still Alice, "Left Neglected," "The O'Briens") is able to weigh in here.
Aristotle Gluteus Maximus (Louisiana)
I just watched the video again. It's obvious now. He is a borderline schizophrenic with kidney failure. It explains all of his symptoms. He needs a psychiatric evaluation and the attentions of a kidney specialist.
anonymouse (Seattle)
Lisa -- these are great stories. Have you considered starting a podcast and having guests offer their diagnosis? They'd be as good a story as any other podcast I listen to -- probably better.
simon sez (Maryland)
I have practiced as an osteopathic physician for 27 years and have treated many cases like this. The patients present with varied symptoms which seem not directly related to known history, imaging studies or lab tests. Simply because one's training does not demonstrate the genesis of our patient's symptoms does this mean they have no physical basis? I did a residency at the National Rehabilitation Hospital in the field of Physical Medicine and Rehabilitation. Our patients with closed head injuries (TBI) had no specific treatment. The allopathic approach is to wait it out and hope things get better. In September, 2017 I sustained a major concussion. For over 10 weeks I was very limited in what I could do. However, knowing that the "official" treatment was unhelpful I received neurofeedback and osteopathic cranial manipulation. Within a few weeks I was back working and treating patients with head injuries like this boy. A complete physical exam must include the subtle osteopathic findings of ligamentous, membranous ( dura mater) and articular strains which, when resolved, allow the normalization of physiology and the elimination of many of these unexplained symptoms. If the practitioner is not trained in this then she may wish to refer to someone who is. The online directory of the Osteopathic Cranial Academy,made up of licensed, trained experts ( DO and MD) is a good place to start. http://cranialacademy.org/ Refer to someone who may know more than you if in doubt.
Socrates (Downtown Verona. NJ)
Well done, brother.
AL (southeast)
Simon Sez - I have the same symptoms as this young man from a 4 year old head injury. I have been looking for a skilled osteopathic doctor that could treat me. Your website is great, but it looks like there are almost no such doctors in the southeast. Is there anyone you can recommend in North Carolina? Where do you practice?
John (Phoenix)
Although now a psychiatrist, in med school in the 70s, I was greatly impressed that the PM&R guys knew everything about anything and could discuss any case from all vantages.
Tiateri (Los Angeles)
I appreciate a doctor admitting she doesn't know what it is. My thought -- as a total layman -- but who does problem solving/trouble shooting in another area is this: perhaps instead of concentrating on the brain, look more closely at the other systems involving the neck and spine. Something there? "Eliminate the impossible, and all else -- no matter how improbable -- must be possible." - Sherlock Holmes (Sir Arthur Conan Doyle)
Wind Surfer (Florida)
Our brains cleanse themselves while sleeping using glymphatic system, lymphatic system and venous drainage, according to Dr. Dietrich Klinghardt of Sophia Health. When concussion of brains occur this self-cleansing mechanism of brains stops unfortunately, piling wastes and toxins in the brain. Glymphatic system is newly found and the following research summary may help to understand. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4636982/
Wind Surfer (Florida)
Summary of "The Glymphatic System – A Beginner's Guide" "The glymphatic system is a recently discovered macroscopic waste clearance system that utilizes a unique system of perivascular channels, formed by astroglial cells, to promote efficient elimination of soluble proteins and metabolites from the central nervous system including brain. Metabolic waste and injury-related debris from traumatic brain injury will exit the brain via the glymphatic system. Unfortunately traumatic brain injury sabotages normal work of glymphatic system and will increase the risk of premature dementia and Alzheimer's disease. Strikingly, in a model of repetitive moderate traumatic brain injury, influx of cerebrospinal fluid (CSF) into the brain and CSF-mediated clearance was impaired in the ipsilateral hemisphere already at day 1 post injury. " The key therapy of the brain injury is how to normalize the glymphatic system. Dr. Dietrich Klinghardt of Sophia Health has learned this from the experience of removing mercury from the brain.
AL (southeast)
So how does one try to normalize the lymphatic system then? What is the treatment?
Wind Surfer (Florida)
This is the educational lecture that Dr. Klinghardt did to the therapists (doctors) taking care of patients suffering from brain toxins or traumatic brain injuries, explaining 'grymphatic system' and how to invigorate the system. This may help Dr. Lisa Sanders or other doctors encountering the similar medical problems. I don't think this will help 'AL' much, but , at least, may give him some idea about treatments. But I still suggest reading the research summary that I introduced because this compiled from more than 100 scientific researches currently available. https://chicenter.lpages.co/dr-klinghardt-on-the-mechanics-of-brain-deto... Dr. Klinghardt works in Seattle and Europe.
Deborah Shear (New York, NY)
I don't have an answer (yet) but just wanted to applaud his mother for listening to her son and believing him. After so many 'normal' studies, I am surprised the good ole standby diagnoses hasn't been mentioned... must be stress/see a shrink. I find it hard to believe that all of his symptoms aren't related to the hit he took, even the paresthesia. The only question I have is if he started any new medications pre or post-concussion, other than the brief use of vitamin B2. Hang in there!!
Bill P (Raleigh NC)
I hope Dr. Sanders finds out what is causing the young man's symptoms and finds a remedy or remedies even if she can't find the source of his complaints. Medical science sometimes advances with "a shot in the dark." And I hope she shares her findings with NYT readers.
Pete (Houston)
This isn't a diagnosis but it could be the start of Chronic Traumatic Encephalopathy (CTE), the brain affliction that too many professional football players have had. CTE has been reported to be the result of multiple concussions. But there have been a few occurrences where the individual suffering from CTE was young and didn't have a known history of multiple concussions. There does not appear to be a definitive test for CTE for a person who is alive. But I wonder if functional MRI (fMRI) or Proton Emission Tomography (PET) scans would trace the activity in James' brain to help his neurologists better understand his symptoms.
David (Austin, Texas)
At least he has a caring doctor.
Frequent Flier (USA)
Hits to the head in soccer should be banned. This poor guy already probably has CTE.
P Rogers (Sag Harbor)
I have absolutely no medical expertise but by simply looking at this young man's dilated pupils in bright light and reading about the soccer accident it seems pretty evident that the MRI or CT scans have missed something. Forget all the elaborate theories and addeded symtpoms and get back to basics. It might be a hairline fracture - or whatever the equivalent is in the brain stem/spinal column world - but I guarantee you the damage is there. Let's just hope that someone has the fortitude and ability to find it, as tiny and unobservable as it may be. Best of luck.
Aristotle Gluteus Maximus (Louisiana)
A modern digital camera's exposure compensation and white balance can make a dim room look bright.
Juan E. Bahamon (San Antonio, Texas)
Difficult case, it sound as a post concussion syndrome however this is an exclusion diagnosis, we need to rule out first chronic hypotension CSF syndrome with an MRI of the brain with contrast looking for hypertrophic meninges. Also a Vestibular fistula can occasionally give similar symptoms for that he will need a high resolution CT scan of the temporal bones with fine cuts.
W (Minneapolis, MN)
I find the whole premise of these 'Diagnosis' articles in NY Times Magazine to be baffling, or even bizarre. It certainly can't be to ease the pain and suffering of James or any of the other people who have been featured. Previous comments in this series has simply led to a large number of strange maladies. The determination of medical (or any other kind of) cause-and-effect is a detective story requiring an enlightened and reasoned train-of-thought. It is not something that can be found by questionnaire. It is also evident that only a short list of diagnostic information is made available. Perhaps the real purpose of these articles is to point out the shortcomings of a heath care system that is severely limited in terms of its diagnostic resources. James should not be expected to 'throw in the towel' until he's been through a dozen or more specialists, and hundreds of tests.
Aristotle Gluteus Maximus (Louisiana)
Unlike what they show on TV, a "minor" traumatic brain injury, a concussion, can take many years to recover from. What is missing in these two "House" episodes I have read so far is any mention of who pays the cost of these tests and evaluations. The last two are young enough to be covered by the parent's insurance. Maybe that's why the doctor took the cases. So I will offer my diagnosis of the doctor's diagnostic routine. She, and others, pass off the responsibility to other doctors, accepting with full faith and confidence that the other consulted physicians are competent, capable and are paying attention to the patient's condition and symptoms with as much rigor as they deserve. She just puts her money on the consulting doctor's opinion, not daring to question his logic, rationale, method, or evidence. He/she has proclaimed and so shall it be. It goes like this: I don't know what it is. Ask doctor Jones. Doctor Jones doesn't know what it is. Ask Doctor Smith. Doctor Smith doesn't know what it is. Ask doctor Freud. Doctor Freud doesn't see anything either. Ask doctor Jung. Doctor Jung says, " I see nothing!" Doctor Lisa is off the hook. She has failed to make a diagnosis of her patient. I'll ask again. How much money has been made from all of these specialist consultations?
Dskmd (Phila)
That is a very cynical view of what happened. When I read Dr Sanders' column I think she comes across as a caring competent physician. WE all have had challenging cases for which we need to seek the assistance of an expert colleague.
Aristotle Gluteus Maximus (Louisiana)
Well, of course. She's writing an article for the New York Times and a groundbreaking Netflix special. She's, no one, is going to present themselves like a person looking to make a little money for their trouble. It's not all her fault. It's how the system has evolved. There is a subtle difference between seeking assistance on a difficult case and just handing off responsibility for the patient to another doctor.
Aristotle Gluteus Maximus (Louisiana)
OK. Prove how cynical I am by showing exactly how much money has changed hands for all of the consults and tests that show nothing abnormal, including charges paid by insurance. All of his symptoms are that of post concussion syndrome. He should have stopped after the initial injury and gone to a physician immediately. His parents should have seen to that and not dismissed the potential for serious injury, but we don't want to blame the victim. That's bad.
penelope (florida)
Sounds like vertigo to me. I have the same thing and continue to have it. I cannot turn my head or sleep on my left side for fear of falling. The neurologists have told me I will always have it. I have had several falls, some very serious with fractures and bleeds in the brain from landing on a concrete floor. I am now very careful. I do take riboflavin and my lifelong migraines have lessened. The neurologist told me that migraine and vertigo go hand in hand. The last time I fell I ended up in the hospital for 8 weeks.
Matityahu (Southeast)
I can surely understand your thinking, however he isn't reporting vertigo but rather at this chronic phase a cognitive processing symptom versus a sensory deficit (which is what vertigo is). The problem is in Dr. Sanders labeling his condition as "brain sloshing." Indeed, he initially describes a "sloshing" (there are other words) like symptom, yet without suggesting he was primarily dizzy. Not clear if he he's had an angiogram or any cerebral metabolic study. He should, as his problem is neurovascular (I am formerly a clinical prof with the Stanford Stroke Center)
AL (southeast)
Matityahu - What is a cerebral metabolic study? How can you be so sure that the problem is neuromuscular? I have the same symptoms as him from a 4 year old head injury. What other tests should I have gotten? I had a CT and CT angio. of the brain, an MRI of the neck and head with and without contrast, and neck x-rays.
Anne (Portland)
It's always interesting when doctors say, "There's nothing wrong because the tests are normal." Clearly, something is wrong with this young man. And this goes for many other people whose tests are normal who nonetheless experience frustrating ongoing symptoms. Too often we say 'nothing is wrong' when we mean 'our tests aren't refined yet enough' or 'our knowledge is not yet adequate to explain this.' Historically, think about women labeled simply as hysterical or as having psychosomatic symptoms. I had Restless Leg Syndrome before it was known as a 'real' thing and was told it was 'just in my head.' (Although ironically that turned out to be true because it has neurological components to it.) Similarly, fibromyalgia wasn't initially taken seriously as being real. I remember reading about (maybe here?) about a boy who had a brain tumor but no one wanted to operate because he wasn't yet demonstrating any physical symptoms (he was 'only' demonstrating psycho-social symptoms like depression, suicide ideation, and homicidal ideation). I know there are many good, caring, compassionate doctors out there who are doing their best, but the symptoms this young man is experiencing are very real. I'm glad Dr. Sanders is taking this seriously (looking beyond 'normal 'tests) and looking for additional input.
L (Chicago)
I echo your sentiment. I'm glad this younging has this doctor on his side to push and advocate for him. As a female who was sick for a full year with every-day ending migraines and rx'd Xanax (by a female doctor) and continually charted as "presenting as anxious" as if that should somehow discounted the severity of my symptoms, I am grateful for this series. I hope it helps a lot of those who feel helpless. Advocating for yourself when sick can be next to impossible. Good job, NYT.
John Doe (Johnstown)
Maybe nothing is wrong, it’s just how the head naturally reacts to being slammed into by a soccer ball. We always act like nature is the stupid one with regard to whatever we do with ourselves.
Anne (Portland)
John Doe: If nothing was wrong he wouldn't be having significant long-term symptoms.