17/06/2021
You have to live how Facebook listens to us 😳😅
I travelled down to the golf coast today to have a bubble test to check if I have a hole in my heart. This is a prerequisite prior to any leg surgeries.
Unfortunately for me the news wasn’t what I wanted to hear. I am one of the 25% that has PFO. No sooner had I thought that I had my head wrapped around lipoedema and my plan of action, then I get this news.
It feels like this is the disease that just keeps giving, and I don’t want any more ‘gifts’ 😅
Next step is off to the cardiologist for further testing. Just remember that even if you don’t have symptoms sometimes it’s good to be on the safe side and double check!
PATENT FORAMEN OVALE (HOLE IN THE HEART) AND LIPOEDEMA PATIENTS
Warning: This article has been posted to educate, not alarm. Please read this post carefully the whole way through.
* What is the Foramen Ovale?
The foramen ovale (foh-RAY-mun oh-VAY-lee) is a small hole located in the septum, which is the wall between the two upper chambers of the heart (atria).
Before a baby is born, it does not use its lungs to get blood rich in oxygen. Instead, this blood comes from the mother’s placenta and is delivered through the umbilical cord. The foramen ovale makes it possible for the blood to go from the veins to the right side of the fetus’ heart, and then directly to the left side of the heart.
The foramen ovale normally closes as blood pressure rises in the left side of the heart after birth. Once it is closed, the blood flows to the lungs to get oxygen before it enters the left side of the heart and gets pumped to the rest of the body.
* What is a Patent Foramen Ovale?
A patent foramen ovale (PFO), also known as a “Hole in the Heart”, means the foramen ovale did not close properly at birth, so there is still an opening in the septum. In most cases, the PFO does not stay open at all times. Instead, it’s more like a flap that opens when there is higher pressure than normal in the chambers on the right side of the heart. Situations that can cause greater pressure include straining during bowel movements, coughing, sneezing, climbing stairs and exercising. When the pressure gets high enough, blood may move from the right atrium to the left atrium.
The condition affects about 25% of the population, but many do not know they have the condition.
* What are the Risks and Symptoms of Patent Foramen Ovale?
Many patients with a PFO do not have any recognised symptoms. However, the condition may play a role in migraine headaches (particularly with aura), tiredness, breathlessness, vertigo and brain fog; and it increases the risk of stroke, transient ischemic attack and heart attack.
> Migraine headaches
Patients with a PFO may have migraine headaches with aura. Although the migraines stop for many patients who have the PFO closed, the paucity of studies on the issue mean there still remain numerous theories about the efficacy of closure.
> Stroke, transient ischemic attack and heart attack
PFO increases the risk of transient ischemic attack (TIA), stroke and heart attack. This is because when pressure increases in the chambers on the right side of the heart, it is possible for a blood clot or solid particles in the blood to move from the right side of the heart to the left through the open PFO, and travel to the brain (which causes a TIA or stroke) or a coronary artery (which causes a heart attack). A TIA is caused by a temporary lack of blood flow to the brain. The symptoms are the same as a stroke, but last less than 24 hours.
Many times, a TIA or stroke is the first sign of a PFO. Patients younger than age 55 who have a stroke without a known cause (cryptogenic stroke) are more likely to have a PFO. These patients are also more likely to have a deep vein thrombosis (DVT).
Patients with a PFO may also have an atrial septal aneurysm. This condition means the top portion of the septum is bulging into one or both of the atria (top chambers of the heart).
> Other PFO symptoms
PFOs do not cause chest pain, heart palpitations, or heart failure. PFOs typically do not disrupt heart function and people are usually able to exercise and carry out all activities normally. However, some people with PFOs can suffer symptoms such as unexplained seizures (which may be mistaken for epilepsy); blue lips; cold hands and feet; persistent tiredness/fatigue; brain fog; sensitivity to noise; unexplained back pain; swelling in legs and feet; overly red face after exercising; low grade constant headache; breathlessness; vertigo; or difficulty running, climbing stairs or exercising due to a significant drop in oxygen levels.
Symptoms of a Stroke and Transient Ischemic Attack (TIA)
• Sudden weakness or numbness in the face, arm or leg on one side of the body
• Sudden blurred vision or trouble seeing out of one or both eyes
• Can’t speak or trouble talking or understanding what others are saying
• Dizziness, loss of balance, unstable walking
• Passing out for a short time
• Suddenly can’t move part of the body (paralysis)
* How is patent foramen ovale diagnosed?
Specialised testing is needed to detect a PFO, as it may be missed in routine cardiac testing if it is not specifically tested for. Testing includes:
• Echocardiogram (echo) – An ultrasound of the heart to check blood flow across the heart valves and chambers. If performed as part of routine cardiac testing the echo may miss the PFO, which is why a TEE is recommended. An “all clear” echo doesn’t mean that a patient is clear of a PFO.
• Transesophageal echo (TEE) – A probe with a tiny camera is placed in the esophagus (swallowing/ food tube) . This type of echo shows a clearer picture of the defect than a standard echo does.
• Bubble study – This is done during an echo or TEE. An IV filled with agitated saline is placed in the arm. The saline makes bubbles that the doctor watches to see if they move from one side of the heart to the other.
Other tests my be needed to check heart rhythm, the nervous system, and conditions that increase the risk of blood clots (hypercoagulable state).
* Why is it important for Lipoedema patients to rule out a PFO if they have symptoms?
There is not a currently established link between PFOs and Lipoedema, because no studies have been done yet. We know of many Australian members of Lipoedema Warriors who have had a significant PFO confirmed, after referral to a Cardiologist by Australian Phlebologist and Lipoedema specialist Dr Chris Lekich. Of those women, the majority have been found to have very large holes. All have required surgery to patch the holes, including several who required major surgery due to the size, location and complexity of her hole.
It may be that those women are purely just representative of the wider 25% of the population who have a PFO; or it may be that there is possibly a connection between Lipoedema and PFO, given that there is also a connection between Lipoedema and connective tissue disorders such as hypermobile Ehler’s Danlos Syndrome (hEDS). We don’t know yet, as there have been no published studies on this issue undertaken anywhere in the world (Dr Lekich and his consultant Cardiologist are looking at changing this). So at the moment everything is just speculation, but speculation worth noting if you have PFO symptoms, because anecdotal evidence shows that a PFO can have significant impacts on Lipoedema patients.
THERE IS NO NEED TO BE TESTED FOR A PFO JUST BECAUSE YOU HAVE LIPOEDEMA. There is cause for further investigation if you have any of the PFO or associated heart defect symptoms discussed above, especially migraines with aura or a history of strokes. It is especially important to discuss the possibility of a PFO with your doctor if you have obvious PFO symptoms AND you are planning to have surgery, including liposuction for Lipoedema.
* Why Treat a PFO?
The PFO’s flap-like valve enables shunting — the abnormal mixture of blood between the right and left sides of the heart. If the PFO allows right to-left shunting, oxygen-deprived blood can carry harmful substances to the brain. These substances include small blood clots, chemicals that may trigger migraine, or nitrogen bubbles that form when coming up from deep-sea dives.
Blood clots that cross a PFO and travel directly to the brain can lodge in an artery and limit blood flow to a part of the brain, causing a stroke or transient ischemic attack (TIA). Risk of this can be increased during surgery.
Also, ALL the Lipoedema Warriors who have had their PFO patched have seen a SIGNIFICANT improvement in their overall health and quality of life. All are very grateful that it was found and repaired. Please keep this in mind if your doctor advises that a PFO doesn’t need to be repaired.
* What do you do now?
If you have no PFO symptoms, you don’t need to do anything. Just continue educating yourself and managing your Lipoedema sensibly.
If you do suspect that you might have PFO symptoms, don’t panic. You should firstly discuss your concerns with your doctor, and reference this post if necessary. If your doctor is unsure, seek a referral to a good cardiologist, or a switched-on phlebologist or vascular surgeon like Dr Lekich, for a second opinion. The many Warriors who were diagnosed with a PFO were all told repeatedly by their previous doctors (including a cardiologist) that it was “just a migraine”, or their echo was clear, so please be aware that this may be the response you get from your doctor initially. To reiterate - an echo may miss a PFO, as it requires a special type of echo to find a PFO, and that type of test is only done if a PFO is suspected. Also the doctor needs to actually test for a PFO, it is unlikely to be found in routine cardiology testing, especially if it is not specifically looked for.
If you have any questions, please ask them here and our PFO-aware group members will be happy to discuss them with you, within the limits of their patient knowledge and experience. However please note that all information provided by Lipoedema Warriors is not a substitute for professional medical opinion. Our group members can talk about their own knowledge and experience, not provide you with professional medical advice.
P.S. If you clearly have the identified symptoms and your doctor refuses to test for a PFO, find another doctor. This is the same advice we recommend if you have a doctor who dismisses Lipoedema. Your life is not worth risking for the sake of keeping the peace with condescending doctors who don’t necessarily know everything. Remember there are Warriors with huge PFOs who were told by numerous doctors, including Cardiologists, (who didn’t think of looking for a PFO) that there was nothing wrong with their heart. Likewise, if you do have a PFO and debilitating symptoms, and your doctor recommends not repairing it, remember the 100% of Warriors with PFOs who are glad they got it fixed and saw immediate improvements in their health. Also be aware that 2 of the Warriors with PFOs are sisters - if this is just a random thing that affects 25% of people, what are the odds of 2 sisters having both Lipoedema and a PFO?
The majority of doctors do not know Lipoedema bodies better than we do. There is so much anecdotal evidence connecting many of our problems to connective tissue disorders, but so little research into how it all fits together. Be your biggest advocate when it comes to your health. Always.
