This is fascinating! I was diagnosed with dextrocardia w/ situs inversus at 19.
I didn't make it to 99 years old to find out I had it, but several physicians and doctors in my childhood missed the diagnosis too. Story time!
This is written on mobile so I apologise for grammar and spelling errors.
I had awful asthma as a child and would frequently visit hospital till my teenage years because of asthma attacks and similar. I couldn't estimate how many X-rays and Ultrasounds I had growing up. No one picked up the Dextro Cardia till I got my medical exam for Permanent Residency in Australia. You can imagine how surprised I was when I found out all my major internal organs are a mirror of where they should be. The consensus so far is that because my organs are all mirrored, most doctors look straight past the condition and consider it to be an X-ray Technician error.
Similar to Rose I experience chronic heart burn and I'm at heightened risk of heart disease, but little more than that. Unlike the majority mentioned in the article, but like Rose, I'm quite healthy and I'm now at the age of 30 with no signs of stopping.
One funny story within a story. I have to wear a medical alert to describe my condition in case of an accident.
When I was in my mid twenties I was in a car accident and my (car hits bicycle, I was on the bicycle) and didn't wear my medical alert. The one time in my life I definitely needed it. In vehicular accidents it's common for your organs to be moved around your chest cavity and abdomen as a consequence of the trauma and inertia of your body travelling and the inevitable sudden stop at the end. I got taken straight to triage in ER at the hospital and was whisked away to get stabilised, x-rays taken and my visible wounds cleaned.
I wasn't quite with it at the time but vividly recall the doctors looking distressed at my X-rays, the doctors came over to mention there's some 'anomalies' in my chest and require an ultrasound.
I have a brief moment of lucidity and mention to the doctor, 'Oh, I usually have a medical alert for this. I have Dextro Cardia w/ Situs Inversus. Thought you should know.'
The doctors lost their minds with laughter and took particular attention to finding the apex of my heart beat (it's not where it should be), prodding and poking my body to find out how it ticks.
To think if I wasn't with it at that time, I may have ended up with corrective surgery which is quite common when DC w/ SI is found to minimise risks associated with the condition.
I was quite fortunate, I had no broken bones, but I did have a concussion and so much road rash and other open wounds as a consequence of the accident.
Still to this day I now wear my medical alert daily, and when ever meeting a doctor they show visible delight in getting to play around with me and my rare genetic disorder. It's all quite fascinating. Including my girlfriend who's a doctor, as are most of her friends. :)
I also have Situs Inversus Totalis. Thankfully I haven't had any major health incidents to date, and my experiences with doctors and nurses has been similar. EKGs in particular can be quite interesting. :)
I'm also diagnosed with Primary Ciliary Dyskinesia, and your mention of asthma issues as a child had me wondering if it's something you're aware of? About 50% of people with PCD also have Situs Inversus Totalis. The primary symptoms are a chronic cough and congestion.
> doctors look straight past the condition and consider it to be an X-ray Technician error.
This can go the other way too. As a student I “corrected” an initial film as it came out the film processor. The patient hadn’t been imaged before and they had dextrocardia. Basically I turned the film over and sent it for reporting with the left and right reversed.
The reporting radiologist noticed as the name tab, which used to be printed onto films, was on the opposite side to normal.
What happens now days with digital processing? Who knows, but a backstop has been removed.
I remember my grandmother said a guy she was married to in the early sixties found out when they went to take out his gall bladder. When the surgeon opened him up, things not as expected.
You might enjoy reading "A Door in the Sand" by Roger Zelazny. (A minor spoiler) there is a scene in which the main character causes similar confusion in doctors, but in his case the reversal was caused by a mishap with a piece of alien high technology.
This is awesome! For some reason I got really nervous reading about your accident. I was sure they opened you up and did some damage!
I hope you keep going strong with the condition. I wonder how many people have lived full lives and never had it be detected.
is the majority of people with Dextro Cardio w/ Situs Inversus Totalis on average left handed (handedness innate) ? or right handed (handedness cultural)?
Biochemical Individuality by Roger Williams [1] is an amazing read. It discusses a wide variety of "unusual" human physiological characteristics, including bones that only occur sometimes.
One hears the refrain "everyone is unique". The thing is, technically you can say "every factory made part is unique" at some level. But humans are much more unique on many more different levels, than any human-made-machine (things like bone density or blood saltiness vary widely. Indeed, very few measures are uniform for everyone).
The remarkable thing is how the different parts of a living thing can still function well with that capacity to vary.
My favorite was a statistician in the late 40's early 50's who was tasked by the air force to find the 'average pilot'. The reason was new fangled jet fighters were crashing due to pilot error. At higher rates than could be anything but problems with the man machine interface.
He and his helpers took 10's of thousands of measurements of thousands of air force pilots and determined that, there is no such thing as the 'average pilot'.
Well there was. About two dozen of them. Turns out that all the measurements were uncorrelated in the already highly selected group that is air force pilots.
Aerospace manufacturers were forced to redesign cockpits with adjustable seats and controls. And the rate of accidents declined.
> The remarkable thing is how the different parts of a living thing can still function well with that capacity to vary
What's really whack when you consider it is the same neuromuscular system that allows us to walk can also be repurposed to drive a car, fly a plane and operate other machinery.
Very interesting. I have "Intestinal Malrotation" and have had surgery for it (cutting ladds bands). Still experiencing several of the issues that I had before the surgery. I am 28 and was diagnosed when I was about 25-26. It is a very rare condition.
One thing I've learned since I was diagnosed is how little we seem to know about the gut and the surrounding area. I hope more research will shed light for future generations.
One of my cats was born with a diaphragmatic hernia and we didn't know until she was like five years old. Organs were all over the place but things were fine. Stomach was in the upper chest, and the lungs had grown into the lower abdomen.
She ended up showing symptoms of not being able to keep food down (although eating slower seemed okay) and so we got it fixed for a pretty penny. It really seems like depending on where the organs end up, there might not be any issue. I was really impressed with how mechanical the problem is and how reliably successful surgery is. Presumably there could be complications if there's a real tangle.
How does the body figure out which side is left and which side is right? I can think of an easy way to break symmetry but it seems harder to consistently know which side is which.
Short answer: at the single cell stage there's a cilium that, spins in a single direction and establishes chirality. People with immotile cilia thus have a 50/50 chance of getting SI, because the developing body chooses randomly.
The article states that situs inversus sufferers "invariably" have severe heart defects, and generally gives a pretty bleak outlook for the condition. And yet this woman made it to 99, without diagnosis, despite several surgeries.
I wonder if anyone has done a statistical analysis to find the true number of undiagnosed cases, because it would seem to be very high.
> But Bentley was an anomaly, one of the few born with the condition that didn't have heart defects, Walker said.
"That is almost certainly the factor that contributed most to her long life," he said.
I agree based on anecdata. Once every year or two (most recently in February) I encounter it. It isn’t always known about and in the recent case the patient had had ultrasounds of the abdomen previously.
I do MRI scans, but have worked in a cardiac centre which might distort things (though NZ’s population is only 4-5 million).
There’s multiple variants of heterotaxy syndromes (left and right variants) as well as many on a wide spectrum. We see a couple a cases a year pass through the radiology department.
The working understanding is that these are ultimately ciliary dysfunctions in utero which cause aberrant gradients for body patterning.
This condition is called situs inversus. There’s another similar one called dextrocardia where only the heart is on the wrong side (literal meaning is “right sided heart”).
I've already planned to do willed body when I pass on. There's nothing like it in anatomy class. Ours had a pneumonectomy, which was interesting to discover (why was the tissue different on both sides?).
My very elderly paternal grandfather has a similar condition. He had a minor abdominal surgery (spleen or gallbladder) in the 1960's, and it took an unusually long time to find the correct surgical site.
The molecular mechanism that determines left-right asymmetry in the body is extremely interesting. For mice, it comes down to Nodal flow from ciliary movement that occurs around E8. The cilia rotate clockwise to generate leftward flow to establish a gradient to generate left-right asymmetry.
In the absence of congenital heart defects, individuals with situs inversus are phenotypically normal, and can live normal healthy lives, without any complications related to their medical condition. There is a 5–10% prevalence of congenital heart disease in individuals with situs inversus totalis
> To honor and respect the privacy of those who offer their bodies to science, no further details are given medical students about the person who had once inhabited the body lying on the silvery slab before them.
[+] [-] LilBytes|6 years ago|reply
I didn't make it to 99 years old to find out I had it, but several physicians and doctors in my childhood missed the diagnosis too. Story time!
This is written on mobile so I apologise for grammar and spelling errors.
I had awful asthma as a child and would frequently visit hospital till my teenage years because of asthma attacks and similar. I couldn't estimate how many X-rays and Ultrasounds I had growing up. No one picked up the Dextro Cardia till I got my medical exam for Permanent Residency in Australia. You can imagine how surprised I was when I found out all my major internal organs are a mirror of where they should be. The consensus so far is that because my organs are all mirrored, most doctors look straight past the condition and consider it to be an X-ray Technician error.
Similar to Rose I experience chronic heart burn and I'm at heightened risk of heart disease, but little more than that. Unlike the majority mentioned in the article, but like Rose, I'm quite healthy and I'm now at the age of 30 with no signs of stopping.
One funny story within a story. I have to wear a medical alert to describe my condition in case of an accident.
When I was in my mid twenties I was in a car accident and my (car hits bicycle, I was on the bicycle) and didn't wear my medical alert. The one time in my life I definitely needed it. In vehicular accidents it's common for your organs to be moved around your chest cavity and abdomen as a consequence of the trauma and inertia of your body travelling and the inevitable sudden stop at the end. I got taken straight to triage in ER at the hospital and was whisked away to get stabilised, x-rays taken and my visible wounds cleaned.
I wasn't quite with it at the time but vividly recall the doctors looking distressed at my X-rays, the doctors came over to mention there's some 'anomalies' in my chest and require an ultrasound.
I have a brief moment of lucidity and mention to the doctor, 'Oh, I usually have a medical alert for this. I have Dextro Cardia w/ Situs Inversus. Thought you should know.'
The doctors lost their minds with laughter and took particular attention to finding the apex of my heart beat (it's not where it should be), prodding and poking my body to find out how it ticks.
To think if I wasn't with it at that time, I may have ended up with corrective surgery which is quite common when DC w/ SI is found to minimise risks associated with the condition.
I was quite fortunate, I had no broken bones, but I did have a concussion and so much road rash and other open wounds as a consequence of the accident.
Still to this day I now wear my medical alert daily, and when ever meeting a doctor they show visible delight in getting to play around with me and my rare genetic disorder. It's all quite fascinating. Including my girlfriend who's a doctor, as are most of her friends. :)
Thanks for reading!
[+] [-] shages|6 years ago|reply
I'm also diagnosed with Primary Ciliary Dyskinesia, and your mention of asthma issues as a child had me wondering if it's something you're aware of? About 50% of people with PCD also have Situs Inversus Totalis. The primary symptoms are a chronic cough and congestion.
https://en.wikipedia.org/wiki/Primary_ciliary_dyskinesia
[+] [-] lostlogin|6 years ago|reply
This can go the other way too. As a student I “corrected” an initial film as it came out the film processor. The patient hadn’t been imaged before and they had dextrocardia. Basically I turned the film over and sent it for reporting with the left and right reversed. The reporting radiologist noticed as the name tab, which used to be printed onto films, was on the opposite side to normal.
What happens now days with digital processing? Who knows, but a backstop has been removed.
[+] [-] Gibbon1|6 years ago|reply
[+] [-] phaedrus|6 years ago|reply
[+] [-] haditab|6 years ago|reply
[+] [-] DoctorOetker|6 years ago|reply
[+] [-] BurningFrog|6 years ago|reply
[+] [-] joe_the_user|6 years ago|reply
One hears the refrain "everyone is unique". The thing is, technically you can say "every factory made part is unique" at some level. But humans are much more unique on many more different levels, than any human-made-machine (things like bone density or blood saltiness vary widely. Indeed, very few measures are uniform for everyone).
The remarkable thing is how the different parts of a living thing can still function well with that capacity to vary.
[1] https://www.amazon.com/Biochemical-Individuality-Roger-Willi...
[+] [-] Gibbon1|6 years ago|reply
He and his helpers took 10's of thousands of measurements of thousands of air force pilots and determined that, there is no such thing as the 'average pilot'.
Well there was. About two dozen of them. Turns out that all the measurements were uncorrelated in the already highly selected group that is air force pilots.
Aerospace manufacturers were forced to redesign cockpits with adjustable seats and controls. And the rate of accidents declined.
> The remarkable thing is how the different parts of a living thing can still function well with that capacity to vary
What's really whack when you consider it is the same neuromuscular system that allows us to walk can also be repurposed to drive a car, fly a plane and operate other machinery.
[+] [-] majkinetor|6 years ago|reply
Freaks of Nature: What Anomalies Tell Us About Development and Evolution
https://www.amazon.com/Freaks-Nature-Anomalies-Development-E...
[+] [-] ecmascript|6 years ago|reply
One thing I've learned since I was diagnosed is how little we seem to know about the gut and the surrounding area. I hope more research will shed light for future generations.
[+] [-] chrstphrhrt|6 years ago|reply
She ended up showing symptoms of not being able to keep food down (although eating slower seemed okay) and so we got it fixed for a pretty penny. It really seems like depending on where the organs end up, there might not be any issue. I was really impressed with how mechanical the problem is and how reliably successful surgery is. Presumably there could be complications if there's a real tangle.
[+] [-] changoplatanero|6 years ago|reply
[+] [-] dnautics|6 years ago|reply
[+] [-] gus_massa|6 years ago|reply
[+] [-] ambrop7|6 years ago|reply
[+] [-] krilly|6 years ago|reply
I wonder if anyone has done a statistical analysis to find the true number of undiagnosed cases, because it would seem to be very high.
[+] [-] heinrichf|6 years ago|reply
> But Bentley was an anomaly, one of the few born with the condition that didn't have heart defects, Walker said. "That is almost certainly the factor that contributed most to her long life," he said.
[+] [-] lostlogin|6 years ago|reply
[+] [-] fallingfrog|6 years ago|reply
[+] [-] riahi|6 years ago|reply
The working understanding is that these are ultimately ciliary dysfunctions in utero which cause aberrant gradients for body patterning.
[+] [-] mikecsh|6 years ago|reply
[+] [-] bluedino|6 years ago|reply
[+] [-] classichasclass|6 years ago|reply
[+] [-] bayareanative|6 years ago|reply
[+] [-] j7ake|6 years ago|reply
[+] [-] crimsonalucard|6 years ago|reply
The only explanation I can think of as to why this would cause an issue is that not everything is mirrored.
[+] [-] DoreenMichele|6 years ago|reply
In the absence of congenital heart defects, individuals with situs inversus are phenotypically normal, and can live normal healthy lives, without any complications related to their medical condition. There is a 5–10% prevalence of congenital heart disease in individuals with situs inversus totalis
https://en.m.wikipedia.org/wiki/Situs_inversus
[+] [-] unknown|6 years ago|reply
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[+] [-] gatherhunterer|6 years ago|reply
https://www.apnews.com/456c51d0a69b4b86bde1a52e9a5e9a60
[+] [-] vagab0nd|6 years ago|reply
Unless you are special I guess?
[+] [-] hello_asdf|6 years ago|reply
[+] [-] qwerty456127|6 years ago|reply
[+] [-] stevekemp2|6 years ago|reply
I imagine you only find out if you're undergoing x-rays, operations and similar.
If there are no obvious side-effects there could be a lot more flipped-people out there.
[+] [-] Gibbon1|6 years ago|reply
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