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Rose Marie Bentley lived for 99 years with organs in all the wrong places

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Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#51

Post by DoreenMichele »

crimsonalucard wrote: post #50
DoreenMichele wrote: post #48

Earlier quoted context omitted.

In many cases, it doesn't cause problems. 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

I understand this. My question is what is the mechanism that causes the 5-10% prevalence? Was something not mirrored? I only ask because it wasn't explained on wikipedia.

The rest of that paragraph: most commonly transposition of the great vessels.

From my read, yes, sometimes not everything is mirrored. But, also, a problem with the cilia can be a cause of the organ reversal. This will cause additional health problems.

Just trying to be helpful. Hope that answers your question.

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#52

Post by qwerty456127 »

Gibbon1 wrote: post #26
qwerty456127 wrote: post #18

Why is this so rare?

Probably as developmental defects go it has to happen really early and be just right or everything goes sideways.

Why is this even a defect? Why do the body parts have to be located the way they usually are and not mirrored? Why dos the body development orientation take the right-handed or the left-handed direction randomly?

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#53

Post by shages »

LilBytes wrote: post #38
shages wrote: post #19

Earlier quoted context omitted.

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. Th…

Holy shit! Yeah perhaps, I'm due for a medical examination, I'll bring this up. Do you often get chest infections too? Apparently that's very common as it is with me and those who have DC or Situs Inversus.

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.

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#54

Post by spockz »

foobarbecue wrote: post #43
kosievdmerwe wrote: post #33

Earlier quoted context omitted.

Not OP, but I always thought it’s amazing how it becomes second nature. You think you want to turn left and slow down, not I have to use my left foot to slowly press the brake and slowly move my hands in a circle while grasping.

Please tell me you meant to say "right foot".

Or he is in a go-kart. :D

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#55

Post by stevekemp2 »

qwerty456127 wrote: post #18

Why is this so rare?

Given the number of people who commented here with their own stories I wonder if it actually is rare.

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.

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#56

Post by lostlogin »

LilBytes wrote: post #7

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 simi…

> 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.

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#57

Post by lostlogin »

furyofantares wrote: post #16
haditab wrote: post #9

Earlier quoted context omitted.

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.

Maybe a tattoo of the organ locations would be helpful?

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#58

Post by LilBytes »

lostlogin wrote: post #57
furyofantares wrote: post #16

Earlier quoted context omitted.

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.

Maybe a tattoo of the organ locations would be helpful?

Unlike most, mine is an exact mirror. I missed it earlier but this is what the Totalis refers to in Dextro Cardia, w/ Situs Inversus Totalis.

Adding a tattoo of my organ placement would be comical. I'd be a human Operations Boardgame by the end of it.

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#59

Post by lostlogin »

krilly wrote: post #31

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.

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).

Re: Rose Marie Bentley lived for 99 years with organs in all the wrong places

#60

Post by agumonkey »

lostlogin wrote: post #56
LilBytes wrote: post #7

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 simi…

> 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…

in a world of ultra high bandwidth, backstops are as needed as removed.. odd
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