• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

patent foramen ovale PFO/Cheney/heart hole etc

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
Has anybody been tested for this and if so what test, what did you learn and do etc as a result? When I saw P. Cheney in 2008 he was into PFO as one of factors with shortness of breath (SOB) and fatigue etc and he said his echo on me indicated possibly having one, but said a bubble test best way to know but its rather invasive if I recall.

I am having increased SOB and palpitations and headaches lately after trying a couple types of frequency specific microcurrent (FSM)--which has been also helpful for reduce pain and fatigue. Unfortunatey one type I tried a couple times was more like a TENs and my body felt somewhat jolted by the microcurrent and next day and on and since have had more heart/b/p symptoms mentioned above. also tinnitus.

I just recalled about cheney talking about the PFO and wondered if one could have been blown more open again--because in the 27ish years I have had this the SOB quality has had different characteristics and it seemed certain med trials esp stimulants could worsen the SOB in this same way. The FSM increases ATP.

Research on PFO now shows that mainstream med has cast it into realm of another blackhole health prob to figure out even tho 25% of us have one and it is associated with strokes.

Does anyone know if Cheney still big on this theory and for those of you that have explore this route I would appreciate any info here or privately because if my new heart and b/p type symptoms continue ruling out PFO may be something I want to advocate for, there is less invasive way to test for it now according to this article
transeophageal echo
http://www.mayoclinic.org/diseases-...men-ovale/basics/tests-diagnosis/con-20028729
 
Messages
15,786
@xrayspex - I had a bubble test 10 years ago with my right-sided numbness episode, and it wasn't a big deal. I don't remember exactly what was involved but it was pretty fast and painless. I think an IV line was used to inject a small amount of air, and it sounds like an ultrasound is also involved.

Mine was probably looking for a problem with the brain's blood vessels rather than the heart, so involved a tight band around my head.
 

xrayspex

Senior Member
Messages
1,111
Location
u.s.a.
@xrayspex - I had a bubble test 10 years ago with my right-sided numbness episode, and it wasn't a big deal. I don't remember exactly what was involved but it was pretty fast and painless. I think an IV line was used to inject a small amount of air, and it sounds like an ultrasound is also involved.

Mine was probably looking for a problem with the brain's blood vessels rather than the heart, so involved a tight band around my head.
thanks for the info!
that is interesting----I am curious, were the results useful to you and did you feel they could have informed your CFS/ME issue?
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I had an endoscopy test for it. One video clearly showing the abnormality and a doctor that decided it didn't matter and wasn't relevant and refused to discuss it further.

FWIW, (because I've learned a lot about it) -

General Medical concensus: 99% of the people who have it, don't know they have it and don't have a problem with it.

Then ... Of the 1% that do have a problem, if it's bad enough it's usually diagnosed due to baby low oxygen levels and diagnosed and treated right away. If it's not caught in infancy then the baby didn't probably turn blue very often... so it probably didn't cause issues with getting oxygen to all the right places...

BUT upon digging a bit further, if you aren't diagnosed at infancy (the general medical concensus is that you're ok)... but in reality those few remaining undiangosed until adulthood -- that have issues with PFO tend to be because they also have a clotting disorder that causes people to be high risk for blood clots (which is why I dug into it for myself, being high risk). If you have a clotting condition, and you also have a PFO, even if everything else is fine and dandy, you can have nuerologic issues caused by veinous clots being able to 'jump' into the arterial system through the PFO and throw clots to various parts of the body - including the brain - which would result in stroke.

I was digging because all my symptoms tie back to the period in time where I was recovering from a serious blood clotting event. And all my symptoms were being told back to me that they had nothing to do with clotting. I had to dig a lot before they did finally convince me that if it is related, it's not direct cause/effect (though it might have been the physical 'trauma' that triggered my system whatever-it-is that flips the symptoms I do have. If we are still buying into the theory that multiple triggers can cause all of this.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Has anybody been tested for this and if so what test, what did you learn and do etc as a result?
I have one. It was found on an echo by the cardiologist who wrote the main textbook on echocardiogram. His evaluation: forget it, nothing to worry about. 10 or more years ago there was a "fashion" of people getting them surgically repaired. Generally that was a disaster.
General Medical concensus: 99% of the people who have it, don't know they have it and don't have a problem with it.
That is what my cardiologist said.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
I had the bubble test which was positive for a PFO then had a Transoesaphageal Echocardiogram which determined it to be moderate in size. The cardiologist who diagnosed me has a real interest in them as being a contributer to migraine and he recommended I have it repaired. I'm undecided about having it done but leaning towards leaving it alone.