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Having a PFO closure device surgically removed

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Posted 10/3/2011 5:20 AM (GMT 0)
I had a PFO closed a year ago with an amplatzar device and have to have open heart surgery to remove it. I'm trying to find anyone who has had to have surgery following a PFO closure. ANYONE? ANYONE?
Posted 10/3/2011 2:16 PM (GMT 0)
T2C2,

Hello and welcome to HealingWell.  I am sorry to hear of your difficulties.  I do not have any personal experience with this procedure but I do know the device can become dislodged and you may need surgery for removal of the device. I am wondering if this is the case for you ?

I do hope one of our members has some experience thay will be able to share with you.

Again a warm welcome to HealingWell.

Kindly,

Kitt

Posted 10/3/2011 3:03 PM (GMT 0)
Thank you. No It did not come dislodged. I had many other complications. Basically I went from being a very healthy, athletic,and active person to being constantly sick with one thing after another. I had the surgery after a TIA to prevent a future stroke. Unfortunately, I am still at risk and I am suffering greatly with other health problems related to the implant. It has been a terrible experience, one that has robbed me of the quality of life I once had. All this, after being told that I would be "able to resume my normal activities within a few days after the procedure".
I am devastated that I wasn't given more information about the possible outcomes, that simple steps were not taken to ensure that all outcomes would be positive, and that everyone concerned hadn't been more interested in my wellbeing rather than in their own research. Maybe if they had, I would have been able to make a more informed decision about my own medical care, and about my life.
Posted 10/3/2011 6:36 PM (GMT 0)
T2C2

Reading your words makes me feel so bad for you and I can only imagine how much suffering you are going through. You have a right to be devestated as you put your fate in the hands of medical professionals and believed all would go well.

If simple steps were not taken to ensure that all outcomes would be positive I hope you have contacted the Hospital Administrator or someone to look into your surgical record for you.

Feel free to vent away here in the forum.  Sometimes it helps just sharing your feelings.

Kindly,

Kitt

Posted 10/4/2011 1:13 AM (GMT 0)
There have been reports of people having devices removed, in fact I thought that I had read of someone having a device removed here on the forum in the past.

I looked in my files and the only reference I could find was this: http://icvts.ctsnetjournals.org/cgi/content/full/7/1/130#FIG2

Note the following line from the article at the link above: "AmplatzerTM device dislocations and surgical reinterventions are currently reported in the 1.0–1.9% range [2, 3]."

That would indicate that there have been a number of people who have had the devices removed. I hope your surgery goes well T2C2, best wishes for a great outcome and speedy recovery!
Posted 3/24/2012 3:40 PM (GMT 0)
Apatchie,

I noticed in another thread that you had your procedure done in Dallas, TX. I am also from the area....recently diagnosed with asd. Cath procedure failed after the cardiologist couldn't block hole with all three sizes of the Helex device. I was referred to a surgeon, with whom we'll be meeting next week. I wanted to know who and where your doctor is for a possible second opinion as OH surgery scares me. Please let me know. thanks.
Posted 6/8/2012 9:28 PM (GMT 0)
You guys are making me nervous. I've had mine for six months now and until recently, all was well, though I'm experiencing a "stabbing" pain in my chest over the last week. Nothing very painful and oddly enough, when I'm working hard at the gym, it goes away. I've thought lately about what it would take to get that thing out as I too had a stroke, prompting the closure. I kept thinking it'd be a LOT more difficult and involved removing it than putting it in, just the opposite of sex (hey, this board needs some humor too!).

I work out very hard almost daily and am back up to seven miles a day on the Stairmaster and my subsequent swim of 500 M. I'll be curious to see how this turns out and I wish you luck, on behalf of all of us!

Oh, I had mine done in Florida, St. Vincent's. No gripes thus far.
Posted 7/1/2012 1:27 PM (GMT 0)
Hi,

I had PFO closures 6 and 4 years ago (6 large holes and multiple small holes)and have now developed arrythmia (AF & VF!!) and have been hospitalised a few times recently. Last year they tried Ablation therapy to try to cure electrical short circuits in my heart causing the conditions and after failing twice (& I died on the table apparently!!) they've come to the conclusion that one of the previously inserted devices is causing a short circuit very close to my sinus node.

Next month I go back to hospital for them to try Ablation again and if all else fails I may be facing a pacemaker or open heart surgery to remove the offending devices and the holes then need to be grafted.

Anyone had any experience of this?

Please? smhair

Posted 7/1/2012 3:36 PM (GMT 0)
No experience with that here Buzz and I say (cautiously) that my stabbing sensation seems to have subsided a bit though I'm still a bit low on Oxygen intake it seems, no matter how hard I work. My TEE is coming up in August.
Posted 7/2/2012 3:36 PM (GMT 0)
Thanks MJRydsFast

Good luck in August!!!
:)
Posted 7/2/2012 6:28 PM (GMT 0)
Hey there BuzzBee6,


Welcome to HW.  I am sorry your having so many problems and I am sure you are feeling frightened.  This forum has a lot of members but generally not to busy so you may not run into anyone who has experience with what your going through. 

Let's hope a member comes along that can share more with you. God bless.

MJRydsFast,

Glad to hear you are doing so well and keep it up.  Also thank you for sharing.

Kindly,

Kitt

 

Posted 7/9/2012 2:34 AM (GMT 0)
Hi,

I am a 36 year old who had a cardioseal closure device put in after it was discovered that I had a hole in my heart.  It has been 10 years and just recently discovered that the device has a bent arm and there is still a small hole.  I have had many vision episodes over the past 10 years that I assume could be TIA's.  I am currently on coumadin and a baby aspirin.  My cardiologist wants to remove the device.  I was wondering what experiences people have had with this.  I am scheduled to have open heart surgery at the end of July.

Posted 7/9/2012 5:54 PM (GMT 0)
Good luck Steub. The whole "fix it" routine for any of these, including my own, sounds like a real ordeal to say the least. Wishing you the best of luck!
Posted 8/1/2012 10:19 PM (GMT 0)

Somebody said...
Thanks MJRydsFast

Good luck in August!!!
:)

Well, I was really excited to get this final follow up done and then Medicaid cut me off on June 30. mad I am no longer monitoring my Coumadin levels nor can I afford to get my final T.E.E. and Holter monitoring done until I go before a judge to re-open my case. Is that not the most retarded thing anyone has ever heard of?! shocked That'a comparable to running a marathon, leading, and then having the organizer route you the wrong way a mile from the end, or presenting someone a birthday cake with only 50% of the candles and icing on it. What's the point? In the mean time, I am finally back at my old cardio levels consistently and the weights/strength is coming good. Does the U.S. government health system ever NOT do anything half-assed? I've spent the last several months looking for gainful employment, the last two "without" restrictions, though when I was looking prior, I didn't bring up my health. I just stated I was capable. Still, no bites, other than the economy. I'll let everyone know when I finally do get my TEE how it turns out. I was supposed to be off Coumadin in a month and was really looking forward to that. I hate that drug. It does have side effects, big time, at least when you're body is a top performer you notice them- stamina, sex drive, alertness (is that a word?)- all diminished.
Posted 10/23/2012 11:52 PM (GMT 0)
Hi All,

Some of us have been "fixed" and we have seen the light at the end of the tunnel.

I had my PFO closed 4 years ago tomorrow.  It was a difficult decision, but it was the right one. 

I am enjoying the same quality of life I had before.  I would say I am enjoying it even more this time, since I am much more grateful for everyday I have on this Earth to live, see my family, enjoy life!

It is such a difficult time for so many of you, I know, but I am just writing to let you know that there is hope.  There are many success stories out there and I am one of them.

I will always be grateful for the people on this site because they listened and they cared. And they truly understood, something which our friends and family may find difficult because it is such a rare condition.

I am a happy survivor of this condition and I just wanted to share that with the rest of you.

I wish you much luck and wisdom in making your decision.  It's difficult, but you will get through it.

Greenhope (Sara)

Posted 10/24/2012 2:36 PM (GMT 0)
Congratulations Sara. I had my final T.E.E. done recently, I think it's my final, and so far, so good. Looking forward to dropping off this Coumadin for sure! Makes me happy to know you're four years out with yours.
Posted 10/27/2012 4:13 AM (GMT 0)

My mother had a PFO closure device implanted in November of 2009 to fix a hole in her heart believed to be causing her shortness of breath and fatigue. She was 48. She had no other symptoms from the hole in her heart and had not experienced a stroke like so many of you.  It was just discovered and the cardiologist decided to close it. A year after the device was implanted, she had a minor stroke and it was discovered that a clot had actually formed ON the device! Mind you, she had no prior strokes or known clotting issues. She was put on coumadin and daily aspirin in the hopes of making the clot smaller and protecting her from having another stroke.

In July 2012, my mother had another very minor stroke and was told to continue doing what she was doing. The clot on the device was getting smaller put had not completely dissolved. Almost six weeks after her second stroke, my mother suffered a massive stroke in September 2012. 60% of the left side of her brain has been damaged leaving her with paralysis of her right arm and right leg and an inability to speak. A visit to our cardiologist found that indeed the rest of the clot from the device had dislodged and cause this massive stroke. Our only option now is to have the device removed through open heart surgery which will have to occur once she recovers from the stroke.

I would like to know if anyone has had this occur with your PFO device. Has anyone had it removed and how did to go?? Any insight would be so greatly appreciated.

Posted 11/10/2012 3:52 PM (GMT 0)
I had an 18 mm aplatzer pfo closure device put into me around may 2010.

I have suffered from a-fib ever since.

Never have had the problem before.

I was assured before the proceedure that a fib only happens in very rare ocassions and only lasts a little while.

I have gone through scores of medication that do not or only work on a limited basis.

I want to have this thing removed and my septal area patched.

Does anyone know of a good surgeon who has done this.

I am at the end of my rope.

This has ruined my life.

Posted 6/29/2015 11:50 AM (GMT 0)
Wow! I'm so surprised to hear these stories. It's looking like PFO closure complications are more common than patients are led to believe. I was also told that I would be send home with a band-aid and "back to normal life" within days!

I am young, healthy and with no previous medical history. I had a stoke in February and a PFO was found on TEE. I have a PhD and ran a psychophysiology research lab for three years, so before making my decision, I began looking at the literature on PFO and stroke, and PFO closure vs medication management. While the science can best be described as inconclusive, there did seem to be a slight advantage in favor of PFO closure. I consulted a cardiologist, a neurologist, and thee cardiac interventionists. All recommended PFO closure so that I would not have to spend my life on blood thinners. No one discussed the following possibilities (which I'm now finding a few small studies that seem to indicate these are real possibilities): 1) That a cryptogenic stroke can actually be caused by prior and undetected Afib, and not related to the PFO (my advice: ask for a 48-hour holter monitor evaluation BEFORE doing a PFO closure), and 2) PFO closure in some cases can bring on a new onset of AFIB that becomes permanent, requiring the patient to be on a heavy blood thinner (like coumadin) and a beta blocker for life (my advice: ask for a realistic assessment of your risk of secondary TIA or stroke risk on blood thinners versus PFO closure, and since the literature has still not conclusively demonstrated a clear advantage of PFO closure, if I had to do it again, I would stay on blood thinners for a few years to buy more time for more research and solutions to emerge. You can always have a PFO closure later, but you can't really undo it once done!).
Posted 4/20/2016 3:19 PM (GMT 0)
Hello Greenhope. I have read your post about PFO closures. My wife had 2 strokes in October of 2015. She is a relatively healthy 40 year old mother of 5 children. Through all of the tests including a TEE our insurance is not willing to close the PFO with the cathedar procedure. They want to do open heart, which we are completely against. I would really like to talk with you more about this. I would really appreciate a reply, my wife's anxiety is going through the roof and I am trying every way possible to help her in this time of need. My personal email is [email protected] or my phone number is 480-329-2837.

Thanks in advance,
Todd

greenhope said...
Hi All,
Some of us have been "fixed" and we have seen the light at the end of the tunnel.

I had my PFO closed 4 years ago tomorrow. It was a difficult decision, but it was the right one.

I am enjoying the same quality of life I had before. I would say I am enjoying it even more this time, since I am much more grateful for everyday I have on this Earth to live, see my family, enjoy life!

It is such a difficult time for so many of you, I know, but I am just writing to let you know that there is hope. There are many success stories out there and I am one of them.

I will always be grateful for the people on this site because they listened and they cared. And they truly understood, something which our friends and family may find difficult because it is such a rare condition.

I am a happy survivor of this condition and I just wanted to share that with the rest of you.

I wish you much luck and wisdom in making your decision. It's difficult, but you will get through it.

Greenhope (Sara)

Posted 9/7/2016 4:40 PM (GMT 0)
TTerry: After having a cryptogenic stroke in 2010, I really wanted my newly discovered PFO closed up with the Amplatzer device, and was subsequently enrolled in a multi-country study assessing closure vs. medication. I was in the medication arm of the study. The results are now in and show a very small, not very significant, advantage to closure. But closure comes with a big risk: increased risk of afib and, if you need to have it taken out via open-heart surgery, you don't need a doctor to tell you the consequences will be serious, as the device essentially needs to be cut out of your heart.

I certainly understand your wife's anxiety. Given the relative equivalence of the two options, however, taking a blood thinner like Plavix is a realistic course. There are no guarantees with either, but a blood thinner will significantly reduce the risk of future strokes and reduce the severity of one if she does have a stroke. In fact, if she does not also have an atrial septal aneurysm (as I do), her risk will be reduced to about double that of the population at large, or about two percent per year. Long-term use of this blood thinner MAY also reduce her risk of developing Alzheimer's in old age, according to some studies.

open-heart surgery may be a real option because, while the procedure of course carries some risk, the PFO will be sewn shut, with no device left in place to pose a problem in the future.
Posted 12/7/2017 10:03 PM (GMT 0)
I had a PFO implant in 2008 and I have to have it removed, scheduled for January 2. What can I expect
Posted 12/9/2017 3:53 AM (GMT 0)
extremely old friend, better starting a new one.
have not seen above members around.
hope you get replies....i have no experience with this procedure.
keep strong.
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