The commitment of family as well as the advancements of neurological medicine and the pursuit of the proper diagnonsis brought about the success of his treatment. Well done!
14
Think of all the people who are mistakenly diagnosed with early onset dementia due to lack of really good doctors.
21
This patient may have Ehlers-Danlos. Screening him and his family for hyper mobility and doing selected EDS genes may be helpful for monitoring him and his family.
6
Had this condition of a leak in the dural sac many years ago.
Head encased in a bicycle helmet but thrust over the handlebars head first cracked cranium several places, one connecting to the sinuses. First time could sit up in hospital bed spinal fluid poured out nose – that and other brain damage led to the amazing long time it takes to recover from head injuries.
The good news is the body fights back and recovery occurs – in my case years later; some memory process never restored, can not order past events well.
I too had a loving partner who patiently suffered through that recovery and its economic and social impact.
14
the patients primary care doctor should have ordered an MRI immediately. a man of 49 does not have dementia until after an MRI is done proving no tumor or other strange finding
8
Very interesting article, I wish the best for the patient and his family. The comments section had more than a few comments about access to health care of this kind and I think it offers an insight about healing this country. He was lucky to have a sister who followed up. It sounds like he was a union worker and would have access to decent insurance. The ACA plans may have been adequate for hospitalization and surgery, but probably not. And then there are the many other insurance plans out there that would only partially cover the costs.
This country needs to make Medicare available to everyone. Having access to decent health care by having good health insurance will be a solid step in reducing inequality in this country.
34
The sister is a real hero. I admire her love and dedication.
52
Fortunate to have family advocates and enough insurance / resources to take on the travel, etc.
And maybe Cedars Sinai gave him a break, as this is a rare disorder, and the surgeon dealing with it would welcome (if that is the word) more cases to study, and cure.
What a miracle of modern medicine, tho. Wow.
Like another reader, wondering what would cause a leak / tear in the usually very tough protective layer?
38
Well done doc's, try, try again - and voila! Surgical success!
4
How fortunate he has a loving family.
18
The sister rushing her brother to the ER for a bout of forgetfulness was an abuse of emergency services. If he was not showing signs of a stroke, it’s obvious the matter could wait for an office visit to his primary care physician.
3
I am very glad I am not related to you. Lucky for the man he was related to a sensitive, caring sister.
62
I hope you aren't serious.
31
Are you serious? This man was barely functioning...absolutely the ER was the right place to take him.
35
WOW. I wonder if we could rule out a brain parasite? Did that create the hole and leak? I am so glad he is ok now. Such an interesting story.
6
One of the best medical mystery stories you've published, NYT, and with a happy ending. As others have noted, the other mystery is how the poor fellow paid for it.
30
So many people commented on how amazing it was that this rare condition was able to be diagnosed and then treated while others bemoaned the high cost of US healthcare and its inaccessibility to many people. Sadly, the two are not unrelated.
One of the major ways that healthcare is kept affordable in other countries is by have a single payer (the government) that is able to use its size to negotiate lower costs (or simply legislate them down). As a consequence, it's possible to provide healthcare to everyone, but the super high-end, innovative, medicine we have in the US doesn't exist because there is to financial incentive for it to do so. I will warrant Dr. Schievink pulls down several million dollars a year in compensation. No doctor in Europe would ever be paid that.
9
Actually, privately paid care is available in England, Spain, Switzerland, Germany, France, Denmark and other countries in which "single payer" (our euphemism, so we don't have to say the forbidden word "socialized") medicine is the norm. If you have the money, or if you have bought private insurance, you can avail yourself of privately paid specialists. The article does not say who paid, or how much, for the diagnosis and treatment. But expert medicine is certainly available in Western Europe and othe parts of the world.
32
Martin,
Just an FYI Germany and Switzerland don’t have single payer. In Germany most insurance is provided by numerous non-profit sickness funds. In Switzerland there is no public option. Everyone pays 8% of income for mandatory private insurance, if 8% isn’t enough the government pays the rest.
5
What motivates doctors to expand the horizons of medical science is not so much financial compensation as it is the curiosity & requisite intellectual ability to explain what causes a disease & what can be done about it. Such innovations as described in this article are not the unique provenance of our current for profit medical system. In fact countries that have socialized system have done very well to pursue answers to the various maladies which afflict the human condition— much better than in the US. The US medical system does often take these discoveries & do a very good job in turning such discoveries into a highly remunerative branch of medical care. Cardiac catheterization & angioplasty, corneal surgery for myopia, treatment of atrial fibrillation & any number of new pharmaceuticals we’re not originated in the US. They did, however, profit many physicians here.
6
Thank you for the details presented in the article.
Best wishes to the patient and kudos to the sister who took such initiative.
13
Great story. I was initially thinking Korsakoff's dementia, but this is a good example of why a brain MRI is so helpful in someone with dementia that has an atypical presentation.
7
My first thought was, what if he'd been old. Dementia would have been diagnosed without a second thought, and he would have languished in a Medicaid home for the aged until something else killed him.
95
No. A neurologist would not have diagnosed age-related dementia, like Alzheimer's, without an MRI. (Medicare pays for this.) That's why it's best to be examined by a neurologist rather than just to allow the family (or the family doctor) to assume its one of the dementias for which there is no effective treatment.
21
That's not true. Every doctor that saw my older father (including 2 neurologists) diagnosed age related dementia without an MRI. My Dad passed away at 92. But I am wondering if we missed something by just jumping to a conclusion due to his advanced age.
6
West-of, that is not true. A primary care physician would do some preliminary diagnostic tests, order blood work, and refer to a neurologist. That is the usual protocol for most health care plans, by the way, even if you aren’t tied to a “gatekeeper.” No primary care physician I know would make the diagnosis you mention. It would be out of her domain to do so.
3
How did this happen to him? He's very lucky that a physician finally managed to find that leak and fix it!
20
An amazing diagnosis, and I'm so glad there's a happy ending to this story. Family members ARE critical parts of someone's care team.
As others have noted, it's totally confounding to me that the U.S. has such amazing health-care specialists and facilities, and such embarrassing and woeful health-care coverage for its citizens.
78
Not always so easy to fine the informed doctor.
In my case of dural leak the suggestion was to be careful and not blow nose, the source of spinal fluid leak from dural sac. The related brain damage was diagnosed by a Kaiser neurologist after MRI who comments ‘you may have brain damage,’ but no follow up.
Fortunately, I was eligible for Veteran Administration care and with inability to function happy to sign on there where I became a subject for the medical school’s neurologists to study through the long recovery process and medication for migraines and vertigo. Bless socialized medicine where it exist in the Land of the Free.
6
@Sohio
Not always so easy to fine the informed doctor. In my case of dural sac leak the suggestion was to be careful and not blow nose, the source of spinal fluid leak from dural sac. The related brain damage was diagnosed by a Kaiser neurologist after MRI who comments ‘you may have brain damage,’ but no follow up. Fortunately, I was eligible for Veteran Administration care as a Korean War vet, and with inability to function, happy to sign on there where I became a subject for the U.C.S.F. medical school’s neurologists to study through the long recovery process and medication for migraines and vertigo. Bless socialized medicine where it exist in the Land of the Free.
My son has had two spinal leaks and 5 blood patches. The most common presentation of a leak is an going severe headache that is worse when upright and is not helped by medication. You are more at risk if you have had a lumbar puncture, back injury or have a connective tissue disease.
37
My best wishes and prayers for your son. And thanks for sharing. I have had many lumbar punctures as part of a treatment. Now with what you've shared and the details in the article, I can be on the lookout. Thank you!
7
I too would like to know the cost of this miracle. With no job there is not insurance. Was he on COBRA? Cost of Cobra? What was his deductable? Coverage at in network? Coverage out? Did Dr in LA accept his Insurance? Did the siblings pay for his health care? Travel? Housing?
He is blessed to have such a wonderful family How about an article on the cost of this miracle?
64
Good points. What I have seen in medicine in the US is a patient presenting with an unusual and dramatic condition will be treated, and then the money part gets worked out later. Perhaps the patient fits, conveniently, into an ongoing, funded study (the doctor’s leap at the chance to grab that patient), or maybe he gets enough publicity that fundraising fills the void. The patients who fall through the cracks are those with common conditions, too much income to qualify for aid, and poor or minimal insurance. Those honest, working, responsible, bill-paying people can face financial ruin from a major injury or chronic illness. That is what is wrong with the system.
15
Wow, I'm stunned that the patient did not have a headache - worse when upright, and improved when supine. That's the way these intracranial hypotension folks usually present.
14
This is fascinating. What an amazing family to have recognized something was off about their brother and to seek help..from coast to coast. It makes me think about a patent not feeling well, going to his doctor, the doctor is clueless because this leakage is rare, and. the patient just has to live with it while he slowly loses all his faculties. The fact that this was indeed discovered, fixed, and now he is well is nothing short of miraculous! A wonderful, wonderful story involving wonderful, wonderful people.
49
What doctor was “clueless” here? I think the standard protocol of doctor visits would have caught this anyway — primary care doctor does preliminary testing in-office, then refers to a neurologist, perhaps with an order for an MRI ahead of that visit — but the patient was too far gone to get himself to the doctor. What saved this guy was a family member noticing he had declined, getting him to a doctor, and then managing his care thereafter.
I lost a family member who, I discovered after the death, had been very ill for a long time and had not been managing her medical care in a logical, realistic way. She had family visiting regularly, but no one took it upon themselves to intervene. The closest relatives said they hadn’t noticed anything amiss and would not violate her privacy anyway. People often see what they want to see, and ignore what would make their lives more difficult. And good people die because of that selfishness..
13
How fortunate this patient didn't immediately get shunted into the psychiatric unit, where they may have missed this diagnosis for some time. He could easily have been assessed with any number of psychiatric disorders and placed on mood disorder drugs, and once on a heavy drug regimen, who knows if this disorder would have been discovered before it was too late. What a relief to hear this man recovered with a sharp diagnosis and successful treatment. Kudos to his doctors and to his loving and supportive sister!
73
reply to Tessa, US
re: "How fortunate this patient didn't immediately get shunted into the psychiatric unit, where they may have missed this diagnosis for some time. "
Psychiatrists are MDs; Nurses who work in psychiatry are also excellent first responding diagnosticians.
The psychiatric unit/hospital is no longer your parents' model of care (if it ever was since the mid 20th century), following the enactment of the Mental Health Act in the late 1950s.
4
Joan Bee in Seattle,
Every hospital has psychiatrists on staff and a locked unit for psychiatric evaluation and holding of patients exhibiting serious symptoms. These are short term facilities where a patient can be evaluated prior to transfer to another facility (if an involuntary 1013 is warranted) or in many instances, given a preliminary diagnoses, medicated and released. I am not alluding to some "One Flew Over the Cuckoo's Nest" scenario. If this man had been seen without a family member to contextualize his condition (say picked up wandering the street alone in a state of dishevelment and confusion), he could easily have been shunted through a different artery of the healthcare diagnostic tree, delaying or impeding his successful diagnosis and recovery. Even when a patient has family to assist in navigating a health emergency, caregivers are often at a loss as to how best advocate for family members they are trying to help.
4
Wonder what all this cost and how it was paid for in the American health care system
52
i bet it was super pricey! but well worth it to save a mans life how tuff for his kids sad situation made worse by stressing about money issues. best wishes
6
Such a harsh ,soulless comment.
11
It doesn't matter what it costs. Most of us pay for insurance and we all contributed a little bit of our money to help him because if something like this happens to us, we would like to be treated the same. It is called civilization.
42
I am so glad this story had a happy ending. What a terrible situation to find oneself in! This man was lucky to have had such caring and persistent siblings, who were able to find just the right doctor to fix the problem, and get their brother in for treatment. May he continue to do well and enjoy many more years of happy life with his family.
103
That's incredible!!
A horrible medical situation diagnosed and corrected!!!!
A human being restored to continue his life!
Thank you nytimes,for a story to inspire gratitude.
87
I'm so glad this person was treated successfully. What an ordeal. What are the most common causes of leaks in the dura?
23
Some of the most common causes of leaks are lumbar punctures, injuries and connective tissue disorders.
9
Thanks very much, Ecat. I appreciate your reply.
1
Truly amazing!
9
It's sad that my first thoughts when reading this story are, but how did he pay for it when he was out of work? Did he have insurance? Otherwise (and perhaps even so) he will have bills to pay for most likely decades on his salary.
What a sad state of affairs for that to be my first thought. Here in Germany it wouldn't cross my mind because everyone has insurance and NO ONE has crazy outstanding medical bills. Going to doctors is just normal and is considered a right, like getting an education and having enough food.
192
Sorry but Germany does not have the specialists to treat this condition. The top 2 doctors that treat CSF leaks are in the US.
6
There are three specialty centers listed in the US, two in California, one at Duke in NC. There are seven centers listed in the U.K., so there are other experts. And the doctor in this article is Dutch, practicing now at Cedars-Sinai. We do not have the only experts.
14
It seems to be an article of faith by many Americans that the U.S. is the only place with first class physicians and specialty centers. Not true at all. But even if it were true, would that outweigh the off the charts cost structure of American medicine for almost everything, but especially the many serious conditions that people are much more likely to have to deal with?
8