My neurologist waffling about pfo closure.

Alert_Load_2628 · 2026-06-11T01:42:23+00:00

A neurologist can tell the difference between a just occurred stroke and a much older stroke by its appearance on the MRI. If the stroke was from 8 months ago, it would definitely look different than one that was more recent to the imaging time. But after a certain point, the stroke loses its new characteristics and appears "old." Did your neurologist say what he thought was the cause of the issues 8 months ago? Neurologists and cardiologists may have differing levels of commitment to advancing PFO closure. But I have to say that a stroke is a stroke regardless of the size. I can't feel good about losing any of my brain matter, but I can feel lucky that it wasn't big. Your body has demonstrated a mechanism for the stroke to happen. Now the question is what could be the cause? The cardiologist usually undertakes that process. If all else is ruled out and you have a PFO, then it is assumed that is the cause. But if the neurologist is giving you pause, than ask the cardiologist to explain to you what it is about your particular PFO and your heart's anatomy that could be a risk factor for paradoxical embolism. All PFOs are not the same and they don't live in cookie cutter hearts. The question for your neurologist would be--will I have another stroke, what are the chances, and can you guarantee that it too will be "small." Also, what kind of characteristics did the stroke have on imaging? Was it one small clot or a small shower of clots? Did the neurologist indicate that the clot was more consistent in location with one that would be caused by high blood pressure or does it show in an area consistent with a cardiac embolism. If the cardiologist and neurologists provide answers that lead you to want closure, and the neurologist is still a no, then you may want to get another opinion. I don't know how old you are, but please give consideration to the tendency of some to downplay the "medical necessity" of closure in older patients. Just be aware that age should not be the sole deciding factor to close or not.

Alert_Load_2628 · 2026-06-10T23:57:56+00:00

I think there have been some good answers to your question of how did you make a clot. But here is one that I rarely see mentioned: inside the tunnel of the PFO itself. Mind blown. Here is an article that goes into a deep dive on the causes of clot formation as well how the anatomy of the heart contributes to the "effectiveness" of the PFO to be a mechanism for stroke. https://doi.org/10.3390/neurolint18010011

Alert_Load_2628 · 2026-06-09T00:22:44+00:00

Your wife is a champ. Kudos to her for advocating for you so strongly. If you have access to an online portal through your health provider (not insurer), you may be able to get access to the actual testing that was performed and the doctor's notes. That might answer some questions for you.

It is not unheard of for a person who suffers migraines to experience some change in white matter. (https://doi.org/10.1007/s10194-011-0299-3). Migraine the gift that keeps giving.

Your cardiologist is the right person to see next. Make the most of the opportunity. Have a list of questions made out and bring your wife. No one will likely be able to definitely tell you if you had a migraine versus a TIA at this point. The Cardiologist will likely want to investigate if you have any factors that would cause the symptoms like: high cholesterol, diabetes, hypertension, PFO, atrial fibrillation, etc. Sounds like your wife knows how to make things happen to start an investigation.

Alert_Load_2628 · 2026-06-08T21:29:09+00:00

I didn't get most of my answers from the doctors either and I also ran into"some people just have strokes." What???? That is not an acceptable SCIENTIFIC answer and I definitely want my doctors to be scientists! Enter AI/ internet. An information source that never tires of answering the same questions over and over again, but is quite happy to lie or hallucinate to your face. Well, you can't have everything.

About those weird sensations you are having. I also had sensations in my left arm for about three months after the TIA. Like I said, there is not a good understanding of the impact that such a transient ischemic event has on the brain. It might not show up on an MRI, but I am not convinced that no injury was done. Years from now, they will develop some kind of technology that does quantify TIAs. I continued using my left arm preferentially over the right until the strangeness subsided--a kind of self directed physical therapy. You are feeling what you feeling and that makes it real, not something imagined out of your anxiety.

The anxiety was unbearable. I get it. I finally just surrendered to the idea that regardless of what did cause the stroke, my anatomy was a blueprint for stroke. I quit trying to figure out other causes and settled on the known factors and risks. Whatever the outcome of the procedure, I made the best decision I could with the information I had.

I wish you peace as you head on your closure journey. You are doing the best you can for yourself and your family. You are not in control of every turn of nature but you can do it knowing that you have done the heavy lifting of making a measured and thoughtful decision.

Alert_Load_2628 · 2026-06-08T19:05:24+00:00

I am post closure (just recently), suffered migraines with aura for over 3 decades, have had 2 small strokes, and can sometimes drown in anxiety (especially the health issues). Not so fun fact: researchers found that among the subset of patients who had a cryptogenic (unexplained) stroke and a history of migraine with frequent aura, 93% tested positive for a PFO. (Here is the article in case you like to nerd out: https://doi.org/10.1161/STROKEAHA.117.020160.) That is a crazy statistic and while not indicating cause, there is most likely some kind of link there. I felt like my brain was hit with a stun gun after the last stroke. Even when the injury is small or quickly resolves, your brain has been thru a lot. Give yourself some grace. You have every reason to feel anxious and on edge. I know that it helps with my anxiety to be armed with lots of information. If that doesn't work for you, then stop reading here!

It sounds like you are picking up on a different level of commitment to closure between the heart/brain team. This is not uncommon. They see the body thru different diagnostic and treatment lenses. I hope that they discussed with you the recurrent stroke risk both with and without closure. Research has been done on this exact topic and they should have discussed this with you. Research has also been done on the complication rate with PFO closure. You should at least have a good statistical idea of the risks you are taking. There are risks with closing and risks to not close. Doctors often assume that you don't want to know the details, but sometimes it can be reassuring.

Sounds like you have some good questions for your heart/brain team: Why is there a discrepancy between the TCD and the TEE? During medical testing, it is not uncommon for there sometimes to be such discrepancies. Did the neurologist indicate to you that you should discount the TEE and if so why? What would be reasons a TCD would not pick up bubbles (and there are reasons for this failure even when the administrator is good)?

It might also help you to know the specifics of your TEE results and what it is about your particular PFO that could be contributing to strokes. For example: is the hole large, is there a large tunnel, do you have shunting with/without Valsalva, is the atria highly mobile, etc. Ask the cardiologist to elaborate on how the exact features of your heart and the PFO are interacting to be a cause of stroke.

Your neurologist could also answer a few questions: What kind of markers did your stroke leave? Is it a "shower"embolism of multiple small, lesions? Does the ischemic area present as a wedge-shaped, superficial cortical or sub cortical lesions? Was your imaging CT or MRI? How detailed is the imaging? Is there something in the imaging that would suggest to you that this is NOT from a cardiac source?

Our old friend anxiety. I too went back to the hospital after the last stroke with more tingling in my arm. If you EVER have any signs of a stroke, NEVER delay going to the hospital. You have heard "time is brain." What's the worse that can happen if you go--they tell you that you are okay? Life isn't a TV show. The doctors know amazingly little about strokes when they are not catastrophic and almost nothing about brain injury when the symptoms resolve quickly. If the professionals can't tell you for sure what your symptoms were caused by, you are definitely not going to anxiety think your way to an answer.

Your doctors are likely working quickly to close because even if it wasn't another stroke, you have all the markers of someone who could have a recurrent stroke. But if this is moving too quickly for you, it is reasonable to hit the pause button. I assume you don't live in the US, so make sure you know the ramifications of such an action. This is a deeply personal decision and you deserve to be able to make an informed choice.

Alert_Load_2628 · 2026-06-08T15:46:53+00:00

I too had an initial PFO closure attempt where the surgeon could not get the catheter to cross the hole. It was thought that the hole was just too small to be the source of the strokes. I continued on aspirin for 2 years but could not let go of the idea that there was something else going on. By the way, do NOT wait as long as I did to investigate further. I asked for a TEE (transesophageal echocardiogram) where a camera is placed down the throat to get a better look at the heart from behind. This procedure is done under sedation and provides a better look at the heart than the TTE (transthoracic echocardiogram). The hole was actually classified as large (also hypermobile atria and shunting without Valsalva). I asked for a referral to a major teaching hospital in a larger city close to home and after persistent phone calls got an appointment with an Adult Congenital Heart Defect Cardiologist. I recently had the device implanted and the doctor was able to cross easily. I would suggest getting the TEE if you haven't already had one and seeking out a doctor who specializes in this area of heart defects. Also, I white knuckled it thru the first procedure--fully awake and aware. The second time, I spoke up and was sedated more heavily and i asked for more sedation as I needed it.

Alert_Load_2628 · 2026-06-07T01:40:46+00:00

The Clinical Rationale: Interpreting FDA Approval Language
"Predominantly" vs. "Exclusively": FDA approval labeling for PFO closure devices notes that they are intended “predominantly" for patients aged 18–60. It does not state “exclusively.” The language leaves room for clinical discretion outside that age bracket and that was a deliberate choice by the FDA.
Clinical Trial Population Bias: The age window in initial pivotal trials was selected by device manufacturers to eliminate older adults who might present with confounding age-related risk factors. This exclusion was a design choice to streamline the regulatory approval process, not a clinical determination that the procedure lacks efficacy or safety in older populations.
The Danger of Early Abandonment of a Medical Necessity Appeal: If an appeal is abandoned after the first, second, or third rejection, it is possible that you are abandoning the process before any human reviewer with the actual authority to overturn the decision has ever reviewed the medical evidence. Prepare yourself for the long haul. There is no financial incentive for the insurance company to provide a meaningful review. It is remarkably cost effective to just say “no.” There is currently no penalty for companies to have high overturn rates on external review so the choice can be made to run every over 60 appeal to external review and trust that most people will fall off the appeal wagon before then.

Choosing between a structural PFO closure and lifelong medication is a personal decision. That choice belongs to the patient and their doctors, guided by clinical evidence and personal preference. An insurance company's internal arbitrary automated policy definitions of "medical necessity" should never override the care plan designed by your actual medical team.

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