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PFO Closure - Open Heart or Transcatheter 2

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Posted 4/25/2008 10:49 PM (GMT 0)

CatMom,

You will be in my prayers.  I wish I would have known about this forum before my procedure.  I would have been a lot less scared as things started happening. 

Remember that you are not alone.  We will be with you in spirit during your journey.  We will send positive thoughts your way!  When you get started on Monday think about positive things, things that make you happy.  Remember that we have been there and are now on the other side of it.  It only gets better.

To a better tomorrow!!!

Posted 5/1/2008 1:12 PM (GMT 0)
Hi everyone, I thought I would update you. I'm 3 days post closure procedure and everything went fairly well. I've had a few chest pains and abnormal beats but nothing too bad and they seem to go away pretty quickly. There are large periods of time where I feel great and totally normal heart related. I did have two problems, though that I wasn't expecting. It seems that I am one of the lucky one's that have vasovagal responses to groin pressure. I had a mild episode during the procedure itself and a bad one when they were pulling the tubes afterward. My blood pressure dropped to 50 something over 36. LOL, I was pumped so full of fluids that it's going to take a week to lose the water weight gain! The worst though, is that I have small veins and they had a real hard time getting the camera catheter up the right side. I am now pretty swollen and black and blue up to my belly button on the right side. Makes for an interesting time sitting and walking. Over all though, I am doing pretty well and am happy to be "on the other side!"
Posted 5/2/2008 2:05 AM (GMT 0)
Congratulations Catmom :)
I hope you continue to do well, and feel better every day. Please keep us posted on how you are doing.
Posted 5/9/2008 1:25 PM (GMT 0)
Hi this is my first entry, I have been reading all your entries with great interest and have some questions of my own if anyone is able to help. I am 1 and have recently been diagnosed with a large PFO. I have been lucky not to have suffered and strokes or TIA's (not too sure what a TIA is though) I have been getting palpatations for over a year and fainted at work last week after my heart raced. My doctor sent me for an echocardiogram which picked up the PFO, I have yet to get the results from the holter monitor I had to wear. I see the cariologist on Wednsday but my doctor seems to think that he will want to close the hole. From what I have read they only close if I have suffered 1 or 2 strokes (I am in Australia so I don't know if that would make a difference in process) I am due to travel to London and Europe on dream holiday with my two children and am scared that the cardio may say I can't fly. Does anyone know if there are any risks associated with long flights and a PFO? If I have had this condition all my life why is it only affecting me now, could it be that the hole has increased in size with age? Thanks for taking the time to read my entry and I look forward to hearing back from someon : )
Posted 5/9/2008 8:16 PM (GMT 0)
I am not a doctor, but from experience I don't think a PFO contributes to your palpitations. The only concern I would have for what you say in your post is that your heart raced, which could be another type of dis-rhythmia. When you say a large PFO, how big is it? I think most doctors are hopefully cautious about repairing these defects w/o any associated TIAs (a mini-stroke short in duration) or stroke. There are risks associated with the procedure, and risks associated with the devices which will mean you go on blood thinners for a minimum months. I did not have device closure. My cardiologist and surgeon were discussing the devices tho, and said that the manufacturers are making a fortune, and the repair of "incidental" PFOs have gone up 50% in the past few years.
So, nobody wants to have a stroke, but you haven't and have lived with it your whole life w/o complication. I'd say that is a good thing :).
This is all just my opinion based upon my own experiences and conversations with doctors. The risks of flying w/ a PFO would probably be similar to w/o. I would just get up and walk around and stand up whenever possible, in order to lessen the risk of deep vein thrombosis. Atrial Septal Defects have been known to increase in size with age, but a PFO really isn't a true hole in the heart and I have not heard of "size" increases.
Have a great time on your trip!!!

CATMON, WAY TO GO. Glad you are doing well.
Posted 5/10/2008 5:38 AM (GMT 0)
Thanks for responding cabikerun. I feel a bit more reassured. It makes sense what you say about not closing the PFO if you haven't had a stroke but does it not pose as greater risk if it is left open? I'm not sure of the exact size as it does not say on my report - it is just refered to as a "Large" PFO, but I intend to find out the exact size from my cariologist on Wednesday as I would myself like to know.
Posted 5/10/2008 4:22 PM (GMT 0)

Thanks cabikerun!! I'm still having some chicken boning and pains plus still dealing with the large hematoma on my right side but overall I feel pretty good.

Dragon23, I'm turning 53 this month and never had a problem or even knew I had a PFO until I had a TIA in February. I have had migraines all my life though and now a days the thinking is that might be a clue to a PFO. I was also diagnosed with an ASA or atrial septal aneurism. That is basically where there is a defect in the septal wall that causes it to bulge out. My regular cardiologist that diagnosed the PFO told me that the PFO does get bigger with age and that is why I hadn't had any problems before. I went to a different specialist for the procedure itself. Because I had a TIA and an ASA he had no problems with my insurance covering the procedure but I know that here at least you are supposed to have had 2 TIAs or strokes or be unable to tolerate the blood thinners. It is definitely good news that you have had no problems, i.e., TIA or stroke. I can't answer to your palpitations. I think that the good news is that you know you have it and can take aspirin or other meds and can consiously avoid things that cause you to strain. I hope you get the answers you seek at your doctors visit!

Posted 5/11/2008 4:08 AM (GMT 0)
Thanks for your reply CatMom5, now I understand why you have to have had a couple of strokes or TIA's before they will do the proceedure. Is it because your insurance will not cover it unless that has happened. I must admit the health system here in Australia is pretty good (Im origanally form South Africa so can compare it to that too) and the proceedure would be covered, with the only catch being that I would be on a short waiting list. But I should know Wednesday and can let you all know what is decided. If they don't do the sergury until I've had more symptoms then I guess it's going to feel like I'm a time bomb waiting for a stroke to happen so the cause can then be fixed - kind of like closing the stable door after the horse has bolted don't you think? : )
Posted 5/11/2008 2:48 PM (GMT 0)
I understand totally, Dragon! I described the time between my TIA and my closure procedure as "stroke-watch 2008". That's exactly what every one was doing, watching and waiting for me to stroke out. I'm not an expert by any means but I did do a lot of research and I do think the problem here if you want the closure procedure done, is medical coverage. It is my understanding that the devices that are being used to close PFOs have really only been approved by the FDA to close Atrial Septal Defects. That is what all the device literature states. When the link between migraines and PFO came to light, closure procedures were being done almost routinely even though people did not have any other symptoms than migraines. This brought it to the attention of the FDA and they implemented the "must have had 2 incidents of TIA or stroke or have a problem using blood thinners" requirements. If you meet these requirements then the insurance companies should cover the procedure. I've heard of some people being denied coverage because they've only had one incident of TIA or stroke. I'm pretty sure the more savy doctors have found ways around these requirements, though. It sounds like with your health coverage you should have no problems if you want the closure done. Good luck!!
Posted 5/13/2008 4:16 AM (GMT 0)
I hope I didn't discourage anyone. I just think as with any surgery/invasive thing, proceed with lots of information and caution. The link between PFO and stroke is not well established as a causative relationship yet, but there are high risk PFO's with more evidence (large amount of shunting, ASA, long tunnel) and if you've had a stroke or TIA and they find this absolutely better safe than sorry in getting it fixed :)))
CatMom, I am curious about the link between Migraine and PFO. My surgeon told me that a very recent large trial/study disproved the link and failed in terms of closure and no more migraines. Is there stuff out there different? You are right about the devices, they were designed for ASD closure. From what I was told, they were originally to be used for those unable to undergo open heart surgery to close the hole. No matter what Dragon, if you go for closure make sure that the doctor doing it has performed LOTS of them. Good luck in your decision.
Posted 5/13/2008 4:17 AM (GMT 0)
catmon, you are right about ways around the restrictions... it's called using "off label". It's why there are not many long-term followups in progress. :-(((
Posted 5/13/2008 7:55 PM (GMT 0)
Hello everyone! Sorry I haven't posted in a while. I have been really busy getting ready for my vacation... 11 days and counting. I can't wait, I really need a vacation - my mother in law is 83 and she has been driving me crazy - long story. :)
So, I read all of your posts from earlier. CatMom5 I am so glad to hear that you made it through! Not glad to hear about the bruising and such, I am surprised they agreed to go any farther with the camera knowing your veins were so narrow. Too bad they couldn't have found an alternative, like doing the TEE instead, maybe that would have been better for you. I am just glad to hear you are on the mend.

I am still have those "thumps" or premature beats coming from the atria. All my tests came back fine though, and I am cleared to workout, run, ride a roller coaster, fly, do what ever I want. At this point, they can put me on a beta blocker to try and stop it, or I can wait it out and see if it just tapers off on it's own. Seeing as how I seem to have little tolerance for medication, and always get all of the negative side effects associated with most medications, I have opted to wait a few months and see what happens for now. Aside from the "Thumps" being a little annoying, I have gotten used to it, and it doesn't slow me down at all. I am back at the gym full throttle, have lost a few more pounds, and I feel really good. :)

Hey- Dragon, as far as your issues are concerned, it's a tricky situation. Flying is not an issue with PFO's. And, I have two friends who have PFO's as well, one who is on no meds at all, and has never had a TIA or anything, he just knows about his because he had an echo done due to a car accident, and another who had one TIA about 10 years ago and has been on Coumadin for a very long time with no incident since, his PFO is only 5mm, and he says he will never get his closed. So, the issue as you can see is very individual, don't feel like you are a ticking time bomb. If you read my previous posts, I definitely was, and I am grateful that I got it closed, but don't let it consume you, there are so many things on this earth that can happen to us! Just follow your gut. And, good luck.
Posted 5/14/2008 3:10 AM (GMT 0)
Hi cabikerun, I'm not aware of the study you are referring to, however my neurologist is participating in a migraine/PFO study and she strongly believes there is a link between the two. Especially between migraine w/aura and PFOs. One theory is that the particles and clots in the unfiltered blood are what precipitate the aura or floaters. All I know is that since I've been on blood thinners and had my PFO closed I have not had one migraine even though I've been under some pretty strong stress. In the past even slight stress would have caused a migraine. 3 months without a migraine is an absolute record for me and I've had migraines with aura since I was a small child.

Hi buffalogirl, I'm so glad to hear you are doing better and I hope you have a wonderful time on your trip! I am still having some extra beats now and again myself but at least the pains have started to subside.
Posted 5/14/2008 2:43 PM (GMT 0)

Yes, I totally agree with you about the evidence of migraine associated with PFO.  I too have had migraines my entire life, and havent had a single one since the closure, and they were much less frequent and less intense since being put on blood thinners.  My doctors too have strong belief in the studies that are being done, and my neurologist and cardiologist are also participating in those studies as well.  They are too on the panel with Duke University and the Mayo Clinic that are trying to get the devices FDA approved for PFO closures, since they are currently only approved for ASD's. I think it is ridiculous that they make you wait until you have had a major episode of stroke/TIA before they let you close it, or you have to come up with $30k on your own to pay for it yourself.  I saw the bill for my surgery, that is what it costs around here from start to finish if the insurance doesnt pick it up, mine was totally covered, thankfully.

Yes, feeling great, I hope you are too Catmom5!  I am counting down the days...10 more before we fly out!  (I am not excited or anything!) the weather has been so lousy up here.  Usually by now every day is 65-70 degrees with plenty of sun, but it has been hit and miss, and a lot of rain. Today is not so bad, it should be about 70, but it is supposed to rain later, I am trying to get as much sun as I can. 

Posted 5/15/2008 10:30 PM (GMT 0)
Hey Patched. How you doing? i am still waiting closure. In England there doesn't seem to be many of us and they will only close when there are more than 2 of us, or so i was told. I am on regular check ups. I have a feeling it won't be much longer.

 

Hello to all of you new people I am like Patched part of the old thread. It has been interesting reading all your new threds. My prayers are with you all.

 

I was told that i still can't ride my horse until after closure, well i got fed up of waiting and started to ride last weekend after a year of not riding and it was soooo good!! I just don't ride out on my own. I feel like my life has been on hold for over a year and i want it back.

 

I hope you all have good recovery and Amy, that you get your life back. As you have all found as i did that this is a remarkable site, there are others like us who are willing to listen and share their experiences and it really helps.

 

Are any of the other oldies still reading the thread? I would love to know how you all are, after all you all helped me make the right choice. If i hadn't had that chest infection in November when i should have had the closure done i would have been back to normal now. 

Take care all of you   

Posted 5/15/2008 10:39 PM (GMT 0)
Just reading back through the threads i get real bad palpitations and acid reflux, if i don't take my antacid medication the palpitations are so bad and do not stop at all My consultant told me that where the hole is it causes the acid reflux. The palpitations and acid are tied in together. Even with my medication as soon as i start to do any exercise ie walking fast or lifting any thing heavy my heart goes into irregular rhythm and i get pressure in my head, even when i walk up stairs. I guess that is why i am not supposed to ride.
Irregular heart beats or palpitations can be a nuisance, but i try not to let it bother me. Has any one else had or got the acid reflux and palpitations?
Posted 5/15/2008 11:20 PM (GMT 0)
Hi Dinby, I am Amy/Buffalogirl...I had acid reflux for a little while after the closure, for a few weeks, and I still have the irregular beats, with and without exercise, but mostly at rest.  I feel better when I am really active, ironically.  I seem to get the irregular beats more often on days when I skip the gym, it's like my heart is punishing me for missing the treamill or something.  I have gotten my life back, and then some.  I feel great.  I just with the "thumps" would go away.  My cardio doesn't seem too concerned about it at this point.  He says that it should go away on it's own in several months, or they can put me on meds to help it stop, but with all meds, they have side effects, and I didn't want to take that chance, so I am waiting it out for now.  I don't have any resitrictions, I am told to exercise, and I am leaving for vacation next weekend, I can fly, ride a roller coaster, swim, do what ever I want!  I have to admit, I am a little nervous.  I trust my doctor. I just dont want to be one of those people you hear about on the news who has a heart attack on the roller coaster.  I have always loved thrill rides...but I havent ridden any since having my stroke last fall, or since having the closure done 8 weeks ago, so I am nervous!  He said I could come in for another echo for peace of mind next week before I leave, but I feel silly wanting to call and go in. :)  Well, I wish you the best of luck when you do get yours done, and keep posting.  It's nice to hear back from people in the same boat.

Posted 5/20/2008 4:57 PM (GMT 0)
Hi Everyone! Well it seems I have now joined the palpitation club! I've had them intermitently post closure but yesterday they were so bad and nonstop that I was taken by ambulance from a local treatment facility to the hospital. At first they thought it was A-Fib and the monitors in the ambulance even read A-Fib but luckily it was determined that it was PACs. I'm back home but on Inderal which seems to be helping a lot. I see my cardiologist on Thursday for my first post closure follow up so we'll see what he says. I sure hope that these things stop soon!

Posted 5/20/2008 8:48 PM (GMT 0)

Hi Everyone -

I am a member of the "patched and concerned" club. At 30 (1992) I had a heart attack for no apparent reason 6 months after giving birth to my second child. In 2000 I had a TIA - my right arm and shoulder went numb. Then, 15 years to the DAY of my heart attack, I suffered a stroke this past December. The doctors ordered a TEE almost immediately after reviewing my history, and discovered a PFO, plus a thinning in my atrial septal wall. While in the hospital and on aggrenox, coumadin and lovenox I developed a DVT in my arm, but I still didn't clearly meet the criteria set by the FDA, Institution Review Board and device manufacturer for the PFO closure. Thankfully, my cardiologist did a wonderful job presenting my case and the procedure was approved, THEN I suffered another hefty TIA while on coumadin. My entire left side went numb. My PFO closure was moved up, and a week ago today, I received my "patch." My left vessel was too narrow, so all of the work was done on the right; I am still purple and green from belly button to the inside of my thigh.

My concern: At times I feel like I have a 20 pound weight sitting on my chest, or it will feel like I have strained a muscle deep inside (can you "strain" your heart?). And then I will feel light-headed or "swimmy."  I've been checking my pulse for irregularities, and it seems a little faster at times, but strong and steady. Or am I just being paranoid?  When will I stop feeling so fatigued?  And I'm really hoping that the migraines will go away.  I have been a sufferer now since my early 20's.  Ugh...I'm so ready to feel normal...

- Soccer_Coach

Post Edited (soccer_coach) : 5/20/2008 2:56:53 PM (GMT-6)

Posted 5/21/2008 2:32 AM (GMT 0)
Aww, soccer_coach, I can really sympathize. I have small veins as well. My right side must be smaller because they had a really rough time of it and even though I'm 3 weeks out, I still have bruises from thigh to belly button. It does get better, though. Don't feel paranoid. I'm pretty sure what you are feeling is somewhat normal after this procedure and is just the heart reacting to a foreign body. I'm just now starting to get some of my energy back and had started walking again until my PAC problem. Take it easy and you'll start to feel better day by day. My thoughts are with you!
Posted 5/21/2008 3:45 AM (GMT 0)

Thank you CatMom5.   :-)   I guess I'm running out of patience even though my situation is by no means the worst.  I'm ready to get back to coaching my high school girls, and traveling with my son's soccer team.  cool   So, praying and hanging in there are the answers...  Or as I tell my players, "suck it up."  I guess that is why they call us "patients?" 

By the way, in case my PFO closure was denied, my cardiologist had paperwork ready to submit application for my participation in clinical trials, including ones that addressed migraines and PFO.  There are still some clinical trials recruiting.  Here is one of the websites I found:  http://www.clinicaltrials.gov  I searched under PFO and migraine.  I believe that INOVA Fairfax Hospital in Falls Church, VA is running one now, as is a hospital in Paris.  - soccer_coach

Post Edited (soccer_coach) : 5/20/2008 10:02:35 PM (GMT-6)

Posted 5/21/2008 2:53 PM (GMT 0)
My cardiologist told me about the migraine study too and my neurologist is participating. The problem with this study is you don't know if you recieved the patch or not. They put you through the procedure but in a certain amount of cases do not actually do the closure. I can't imagine going through that and not having 100% assurance that your PFO is closed. Plus you're back to having higher stroke risks, etc. I didn't want anything to do with the study as I wanted my PFO closed! I really hope you start to feel better soon.
Posted 5/24/2008 2:48 AM (GMT 0)
AGA has some clinical trials, too. But I'm with you...I wanted my PFO closed, as did my doctors. My kids are teenagers, and I'm not up for unnecessary risks, especially since this procedure is still considered experimental.

Today was a little better; I actually slept well last night...but I found out today that my INR isn't coming up so I'm still on Lovenox. Two weeks...blech...and my memory has been so poor lately. Is this common? I wonder if it is fatigue, procedure, medication, or a combination? Up to my last TIA I had gotten pretty close to being back to myself. Now I feel more like I did right after my CVA. Grasping for words, stuttering, getting appointments confused, misplacing things... I feel like I've aged years in a matter of months. I still crave "normalcy..."

Thank you for the encouragement...
Posted 5/24/2008 2:47 PM (GMT 0)
Soccer_coach, are you still on coumadin? I was on coumadin after my TIA until my procedure then right before the procedure I was switched to Plavix and 325 aspirin. I will be on the Plavix for 6 months and then will continue the aspirin for life. I can tell you that when I was on coumadin I was always tired and it didn't matter how I slept at night. I was ALWAYS dragging. They never could regulate my INR either and at the end I was taking 10 mgs a night. I think coumadin also plays havoc with your mind regarding memory and such. I was never more happy than when I was taken off of the coumadin. Maybe you could ask your doc if you could use Plavix instead? Regardless, I think you need to be patient with yourself. You've been through major happenings with your body and it needs to rest. Your energy will come back and you will be able to do those things again. Just build up slow but sure and you will get there!
Posted 5/25/2008 1:55 AM (GMT 0)

I've been on Coumadin since December 20th, anywhere from 2.5 mg to 10 mg.  I caught both strains of the flu in January and February, then developed an upper respiratory then bronchial infection.  Then I had an ear infection, and let's not even talk about the nose bleeds that resulted in the privilege of receiving a "rhino rocket."  Of course antibiotics totally mess with Coumadin, even though I am on name brand and it is more predictable than generic, so it took several months and lots of Lovenox to get me regulated, and I still had the TIA in April.

I am very "clotty" and am being retested for clotting disorders.  I have tested positive for the MTHFR genetic marker.  But my confusion and fatigue have not been this bad since after my stroke, although I haven't needed to return to napping after showering!   tongue   Now I am on only 7.5 mg, plus 60 ml(?) Lovenox twice daily until my INR is up to 2.5.  I was told that at 6 months I will be moved over to plavix and aspirin for the rest of my life, if the patch has been completely healed over.

My doctors have become extremely conservative - no cowboys in the house, thank goodness!

Today was better; the 20 lb weight was on my chest only twice for just a few minutes.  Improvement!!  But I was completely relaxed watching my son's soccer games.  Perhaps quitting work and stopping the housework is the answer!  yeah

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