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.
Yes, it's common, and I have regular mucus build up because, well, my cilia don't clear it well for me. :)
As rscho mentioned, you should definitely bring it up and see if you can get a referral to a specialist. I see a pulmonologist regularly to keep an eye on it. The term Kartagener syndrome (SI + PCD) may ring a bell to them more than PCD will.
I was misdiagnosed as a kid as having asthma (or something like that, I don't remember this well), and doctors prescribed an inhaler but it had no effect. My parents had me seen by a pulmonologist which then led to a diagnosis.
The parent is correct. This is a common association in situs inversus, and you should seek specialized care. Your GP will probably not know about that (it's extremely rare), so if you have to insist, do so.
Absolutely related! The ciliary malfunction causes the situs inversus in embryonic development by swishing your chemical development signals the wrong direction
> 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.
Did the X-ray have the metal L/R "tags" in the image? Did you assume the radiographer had placed these incorrectly? My understanding is they are how you understand orientation.
I can’t remember, but in a chest x-ray room it is usually taped to the Bucky reversed, in which case I had assumed the letter was around the wrong way.
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.
Yes there is something very disturbing about the thought of doctors potentially opening up your body and shuffling your perfectly functional organs around because they think they’re supposed to be somewhere else.
is the majority of people with Dextro Cardio w/ Situs Inversus Totalis on average left handed (handedness innate) ? or right handed (handedness cultural)?
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!