Amplatzer heart implant used to close PFO’s & ASO’s in heart. Causing erosion of heart Tissue on rare instances

[SoulRebel-APS]

I know somebody, forgive me for not remembering who, said that they had a PFO or ASD closure I just wanted to let it be known the the Amplatzer has been known to cause erosion in the heart creating medical emergency since is can cause heart problems and possible stroke. If u have on look it up on dangerous drugs. Com. It is extremely rare but just wanted it to put it out there so people will know!

[Wittycjt]

Great you’re trying to help, Cindy

[SoulRebel-APS in reply to Wittycjt]

I had the eco cardiogram and, from what I could see, we did NOT see any transfer of blood from one side of heart to the other. That’s a good sign that it hasn’t caused erosion. Still need couple more tests but looks good so far. I know this sounds insane but i would rather my new symptoms just be a different kind of stroke. I can deal with that! But I don’t want heart surgery! 🙂

[MaryF Administrator]

Yes the detail in the fine print is always worth a read, I always read the drug leaflets that come with any medication, rare or otherwise. MaryF

[SoulRebel-APS in reply to MaryF]

I do to. Unfortunately I was not given the information at the time. But as bad as I was I probably would have went ahead with surgery anyway. It’s saved me tons of TIA’ . I brought it up just to make sure someone facing the same issue can look into it an talk with dr & surgeon and make an educated decision to use the implant or not. 🙂

[leakeadea]

Thanks for your post.

I have been looking into whether to have my pfo closed, as I am soon to have my IVC Filter, clot catcher, removed and I'm worried about blood clots reaching my brain and causing me to have TIAs again, by passing through the hole. I had already decided that I wouldn't want to have any foreign objects used to close my hole, as I know from experience with my clot catcher, that any foreign objects in the body can cause more clotting issues around the site of the object, especially if you have sticky blood. Claire

[SoulRebel-APS in reply to leakeadea]

It is a rare occurrence. My implant has saved me hundreds of stroke, from clots jumping sides and building up n my brain. Not to mention the horrific 8 day headaches that come with it. There where no options given to me at the time! The bigger the Amplatzer the bigger the chance of erosion or other difficulties. The majority of patients do well wit the implant. U just want to look it up an inderstand the symptoms of the implant failing. Would be nice if they could got n thru ur leg and just stitch the openings closed. There are only problems in 1 to 3 people out of, I think, 1000 will have any difficulties so u might way the chance of a problem verse the benefit. If I had none the odds st the time I still would have had it done. My consern is due two when I went under they knew I had a PFO but once in there with the TTE camera they found I also had an ASD. They may have used a larger Amplatz to cover both openings. Increasing the possibility of erosion issues. I an experiencing many of the symptoms, however, they are symptoms that can be explained in other ways. So I gunna get mine checked. I will post the findings. Good luck! I still believe, especially since the size of implant matters I still would have gontten it done. I don’t think I would be alive today if I hadn’t.

Give it thought both ways and talk with ur surgeon. So that u can make a educated decision. If u only need a small Amplatz then the odds of having a problem are even lower!

Good luck 🙂

[leakeadea]

SoulRebel-APS.

Apparently my pfo is small and only opens intermittently, so I am getting conflicting advice as to whether or not it should be closed. I also have no clear evidence as to whether the clots on my brain were due to clots passing through my pfo, or whether they were arterial but I'm hoping to get some clarity regarding this soon. It sounds like it was important for you to have yours closed but I wonder whether there is any protocol in place for these devices to be checked regularly? Surely that would mean that the devices would be safer long-term?

Had my IVC Filter been regularly checked I'm quite sure that I wouldn't be in the state I am now, it's been in place for 12 years and had never been checked until last year but the radiologists still failed to highlight its multiple complications in 3 separate CT scans! I think that any new implants of any kind should have protocol in place for regular checking, after all its only with time that many complications may arise. They rarely ever put in permanent IVC Filters any more, especially if the patient has clotting abnormalities however like you, when mine was put in place I wasn't given a choice, I was told it was an emergency situation due to multiple DVTs in my groins.

I wish I'd had time to look into it, as I would have asked for a temporary IVC Filter had I been educated as to the risks and complications, the longer the filter is left in place. Once bitten and all that, I will definitely be asking a lot more questions before allowing any other foreign object to be put in my body😮.

[SoulRebel-APS in reply to leakeadea]

Well I knew mine was do to the number of Tia’s & CVA’s and the extreme chronic headaches that were to small blood clots building up until the were big enough cause a tia. My tia incidents went from several a week to just one or two a week at most!

Good luck. Maybe u just need to wait and watch!

Good luck!

[leakeadea]

Thank you, I just need to be certain as to what actually caused my TIAs, I'm hoping to get that confirmed soon.

[SoulRebel-APS in reply to leakeadea]

I can tell you one thing for sure, if u have a PFO closet will jump the the other chamber in the heart and go straight to ur brain. Closure should decrease your chance of stroke. No Dr can say a specific thing caused or didn’t cause a tIa. Except it was caused by a blood clot. But u said ur hole is very small and only open sometimes. I might be ok with it the way it is.

Good luck!

[SoulRebel-APS in reply to leakeadea]

If you want to. Let me know what they tell u. I would be interested in ur doctors answer!

[Lure2 in reply to SoulRebel-APS]

Hope you are well anticoagulated.

Kerstin

[leakeadea]

SoulRebel-APS,

I will definitely let you know but it will probably be a while as I have to have the IVC filter removed first.

Kerstin,

In my opinion it's all a bit back to front as I don't feel well anticoagulated on Apixaban and have been repeatedly telling every single doctor I see this. I know for certain that I am either still producing clots, or that there are old clots, debris etc below my IVC filter. I had a reasonably large pulmonary embolism just last week in the night which was very frightening and I feel small ones land in my lungs regularly. All I get from the doctors is that Apixaban is a good anticoagulant, I'm hoping that when they do the venogram at the same time they take the filter out, they will see evidence of clots and will finally believe me.😕

[Lure2 in reply to leakeadea]

Why not ask for an LMWHeparin-trial and see how you are on an anticoagulation that probably is better than Apixaban for you? You do not have to selftest as the drug is based on your weight.

What do you have to loose? Hope they understand so much about our illness as they let you discuss this with them. Otherwise change doctors.

Best to you from

Kerstin

[leakeadea]

Thank you Kerstin, I will ask about trying this when I speak with the thrombosis team.

[Wittycjt in reply to leakeadea]

Leakeadea We’re you switched?

[leakeadea]

Hi Cindy, do you mean switched to heparin from Apixaban tablets? If so then no. I met the very well known UK thrombosis/APS specialist at the beginning of Dec, when an inpatient a St Thomas hospital having my IVC filter removed. She refused to even have a discussion with me when I said that I wanted to try heparin injections, at least until I had recovered from my very traumatic operation anyway.

She told me that I don't have APS and that I don't have micro clots, even after I handed her the results of my head MRI, which said that I'd experienced "micro clots"!

I'm hoping that I can find a local Haematologist in Kent who will be willing to discuss my choice of anticoagulant medications, as I have no intention of returning to thrombosis clinic at St Thomas hospital. I would like to have an input into the type of anticoagulant medication I would like to take, especially given that it will be me suffering from PEs, DVTs, TIAs or even a stroke if I'm not adequately anticoagulated.😵

[Wittycjt in reply to leakeadea]

Yes that’s what I was referring to, but then again if the apixaban is working good for you???

Problem is you don’t know if it was working because of the infamous faulty filter , arghhh

I guess it’s a wait and see issue now.....

[SoulRebel-APS in reply to Wittycjt]

What is apixaban

[Wittycjt in reply to SoulRebel-APS]

It’s a NOAC (new oral anticoagulant ) that does not require bloodwork levels. Unlike an INR ( blood test) that is needed for warfarin/ coumadin

[KellyInTexas Administrator in reply to SoulRebel-APS]

Hey soul Rebel- I think it’s brand eloquis.

Hey I have a quick favor to ask. I’m grabbing your attention here and then will go to Private message so I don’t high jack this post- but I’m near you here in New Mexico right now- just up the mountain from Roswell in Alto/ Ruidoso.

There are no medical facilities here- other than bare bones.

My INR crashed yesterday by one full point- extreme migraine resulted and some all too common very manageable clotting symptoms- nothing too serious. I have my injections of heparin, all I need.

Who is your hematologist in Roswell if I get in trouble?

[SoulRebel-APS in reply to KellyInTexas]

There is a hemp he is at Kymera located inside ENMMC cancer center. PM me and I will give more info.

[KellyInTexas Administrator in reply to SoulRebel-APS]

There you are! Thanks.

[KellyInTexas Administrator]

Oops Soul Rebel- accidentally put my request to you under Cindy’s reply. ( I need morning coffe!)

I’m with you in New Mexico right now- just up from you in the mountains. Alto/ Ruidoso.) New Years skiing. ( slushing... only Capitan is decent.)

My coagucheck is down one full point- but by vein it’s probablt more- and I have a chromogenic Factor x issue going on so My INR probably dropped into the 2.6 range yesterday - for no good reason at all.

Mayhem in my body ensued I am stabilizing but handeling it on my own - brought my own pharmaceutical company with! ( Heparin injections, migraine meds... etc.)

If I can’t remain stable, or clot beyond what I can manage ( I’m handeling well other than the migraine that I had trouble resolving) I may need help.

Who is your hematologist in Roswell?

You can Private message me so I don’t continue to high jack this Post. Just wanted to grab your attention.