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PFO Closure - Open Heart or Transcatheter 2

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Posted 4/6/2008 12:36 PM (GMT 0)

Oh, forgot to tell you guys, I had three really bad episodes yesterday, with my heart...I guess you would call them palpitations? Or maybe arrythmia? I told my cardio about it, and he said not to worry, they will figure it all out this week, as long as I am not in pain, and as long as they don't last more than a few minutes, it is okay to wait it out until my appointment this week.

Odd thing is, it happens when I am sitting down, at rest, not with activity -- afterwards. I get this slow, thumping in my heart, a squeezing, pumping sensation, it feels like it is out of rhythm, and like my heart is going to come up out of my throat, and they last anywhere from 5 to 30 minutes at a time, it happened 3 times yesterday.

Any idea what that is?

Posted 4/6/2008 1:07 PM (GMT 0)
Thanks, Amy, good to hear about the Plavix! I guess every Doctor and situation is different. They are not doing a TEE with my procedure. Maybe because I've already had one? They will send the catheter up one side of the groin and in the other leg will send up a camera with some ultrasound thingy.

I'm sorry about the strange episodes you are having. It sounds very uncomfortable. I hope for your sake they are able to figure out what is wrong quickly! Do they think these are some reaction to the device? I get some mild palpitations every once in awhile but nothing like you discribe. Usually mine are while at rest as well but I figure that maybe I just don't notice them as much if I'm occupied doing something.
Posted 4/6/2008 1:40 PM (GMT 0)
Thanks, yeah, I am wondering the same thing about my issue, if I am having them when I am busy and I just don't notice them as much, but they are pretty intense when I am sitting still, so I think I would notice it if it were happening while I am walking around too :).  I have heard about the procedure where they don't do a TEE, and they do the camera up your other leg. I am sure it is just a matter of preference for the surgeon, really, and what works best for them for imaging purposes and success in the procedure itself, risk to the patient, etc. The only thing with that is then you have two incisions to worry about, two pressure bandages, etc. (I am not saying that to worry you or anything, it sounds like you have a really good doctor) Mine is really good too, one of the best, he graduated top of his class from Duke University, trained at the Cleveland Clinic, and worked at Texas Childrens Hospital for a while before landing here in Buffalo. The only problem working with these "brilliant" doctors is that sometimes they don't like it when you question their decisions/opinions, and they don't always like it when their patients might be as smart as they are. Mine is pretty good though, and he always seems to appreciate my input.

Posted 4/7/2008 6:51 PM (GMT 0)
That depends, did you have a TEE with the PFO closure? sometimes that can cause chest discomfort, sore throat, etc. You will have discomfort when you lower your head, bend down, especially to look at something or to tie your shoes. It will go away after about a week. I had chest pains for about 4 days, nothing intense, more annoying than anything, if they are sharp,  I would call your doctor. When you get to day 3 or 4 you will start to get the sensation like you swallowed a large pill and it is stuck and you can't swallow it, only it is on your left side, not in your throat, that is your brain telling your nervous sytem there is something foreign in your heart that doesn't belong there, in about two weeks or so, that pain will go away too, your brain will forget to send out that signal. The doctors don't like to tell you these things. If you had an infection you would have a high fever. The fullness is normal, I still have it, I am on week three post-op. I am getting more palpitations, actually possibly a-fib symtoms, going in for major tests all this week, will keep everyone posted, possibly having the device removed & PFO repaired surgically, or possibly will have to have my heart shocked back into a normal rhythm as these episodes are getting worse each day.

Posted 4/8/2008 7:29 PM (GMT 0)
Hey, thanks for the input, I actually had appt with my cardio this morning, I am wearing holter monitor as we speak, for 48 hours, lotsa fun. :) I had ekg and echo today. actually dont think I am having a-fib episodes, after speaking with him today and going over my tests looks more like this is slowing down my heart rate rather than speeding it up, like an a-fib episode would, my bp was elivated today, high 130's over 90's, normal for me is about 110/70, but my heart rate was actually only 59, doctor says they like your resting heart rate to be 60-100, mine is usually around 70, but has been low since post-op, and during these episodes seems to go even lower, I almost seem to want to faint. So, we shall see. Echo came out fine, device is well in place, no defects of any kind, no slippage or anything like that. My blood work should be back tomorrow, so I should be hearing from my neurologist on that as well. I have my transcranial doppler next week, so as for now I am in limbo until all the tests are done and the two doctors put their heads together on this one. :) ~

Posted 4/9/2008 11:28 AM (GMT 0)
HI Amy, That's good news isn't it that the device is well in place? I hope they are able to determine what the problem is soon for your sake! I can imagine how frustrating this is for you. I'm having my own frustrations. My closure procedure has been postponed for 2-3 weeks because.....get this......the doctor wants the device rep on hand and he isn't available until then. Now I know that this Doc has done many, many of these procedures using both types of device [he's THE GUY in our area] so why does he think he needs the device rep in my case? Things that make you go hmmm........
Posted 4/10/2008 12:32 PM (GMT 0)
Hi, catmom5, my guess is that he wants the device rep there because he is using you as a case example?  did you give him permission to do that?  I would ask why he wants the rep there!  It seems fishy to me.  THere would be no reason to have a device "rep" present at a procedure, he is not a surgeon, just some "suit" from the manufacturer.  Yeah, I am frustrated, and tired.  But, the good news is I decided to make an executive decision to not let this rule my life... life is just too darn short!  I have two sons, 14 and 6 years old, and a husband to think about, who works very hard to support us, we haven't taken a family vacation in 3 1/2 years, so yesterday I booked us on a 9 day trip to Disney World for June! We are extremely excited.  I don't care anymore what the doctors say, I am going no matter what happens with these tests! :) Anyhoo, good luck with your stuff, and be sure to let me know what happens. I will do the same here.  I hope it all works out, for both of us. ~

Posted 4/12/2008 2:48 PM (GMT 0)
Amy, the trip sounds fantastic and just like you need right now! My husband and I have already had two trips down to FL since this has all happened. We just got back yesterday from one. I live in northern IL so you can imagine the weather we've been having and the trips to FL have done wonders for me, not only the better weather but in helping get my mind off of everything. I think a family trip is just what you need right now and your kids will love it! I'm hoping for the best on your test results.

My procedure has been rescheduled for the 28th. Hopefully it will take place this time. I'll definitely keep you updated.
Posted 4/12/2008 2:56 PM (GMT 0)
CatMom5, thanks!  Yes, we are very excited, we talk about our trip every day now, we keep looking at the Disney website and talking about what we are going to do each day down there, and  I have begun making lists and things like that, it has been a really nice distraction from all of this, something positive to focus on. I think it is really important for us heart patients to have that! I have been really busy the past few days around the house, rearranging things, spring cleaning and all of that sort of thing, and I think I have over done it... the "thumps" are happening more often, I even got a brief sharp pain this morning in the upper left quadrant, I think you know what I mean. I dropped the holter monitor off yesterday, the doctor said I could go back to the gym, ease back into things and see how it goes, he even said I could start lifting things again, and to follow how my body feels.  It doesn't feel so great this morning, I am afraid to push myself too hard.  I suppose I have to remember that I am only less than 4 weeks post op, and that sometimes when they go poking around in there the heart can react negatively, and take a little longer to bounce back than we would like, so I just need to give myself time to heal. I hope that's all it is!  Well, I wish you all the best of luck, and please keep me posted.  Feel free to chime in as the day comes closer, I am sure your anxiety will be building, and you may have more questions.  I am here! :) ~

Posted 4/14/2008 12:26 AM (GMT 0)
Hey Amy! What a coincidence!! Since moving to the US, I've always wanted to go to Disney World and since this whole PFO issue I've reconsidered things I wanted to do and am going on my Disney Vacation next week. My follow-up is scheduled for the 29th of this month and I planned it in such a way so I could come back and deal with it :) I'm so looking forward to Disney! I'm fm Illinois too!! Where did you get your procedure done? Mine was done at the Edward Hospital.
Posted 4/14/2008 12:52 PM (GMT 0)
Hi VN2000! I'm north of Chicago and my procedure will be done at Evanston Northwestern Hospital on the 28th of this month.
Posted 4/14/2008 1:14 PM (GMT 0)
I am from Buffalo, NY. I had mine done at Women & Children's Hospital of Buffalo. But, I too am going to Disney, in June! :) I wonder if Disney realizes what a wonderful thing they are doing for us, I should write them!

Posted 4/14/2008 3:40 PM (GMT 0)
OK. So, I just found out my insurance company denied my claim. Have any of you had this problem? Did you appeal? What happened? I've had one stroke and apparently the protocol is 2 strokes to get it covered without any issues.
Posted 4/14/2008 3:47 PM (GMT 0)
My doctor has never had any of his denied, I am 4 weeks post op, I am sure I would have heard ny now if it was. But, I had enough complications with medications and TIAs that I don't think they would have denied it. I think your doctor just has to fight for it to be approved, have more testing done to justify it. Each insurance/state is different. Good luck. :) I live in NY though, and they are one of the toughest with these things.

Posted 4/14/2008 8:12 PM (GMT 0)
VN2000, that's terrible! My doctor didn't think it would be a problem that I only had one TIA as he hasn't had any denials yet. I have a PFO and also an ASA. I don't know if that makes a difference or not. We are in the pre-approval process right now and I have my fingers crossed that the approval comes through. I certainly hope you will be able to win the appeal! What insurance company do you have?
Posted 4/16/2008 4:26 PM (GMT 0)
I don't have any idea why they denied it. I have Cigna and I believe if you have a condition then it's approved but due to the whole FDA non-approval it's in limbo land right now. The doctor has sent a written summary or report of the whole requirement and the insurance company has to review it and give another decision. I hope it goes thru well and we don't have to spend 30k out of our pocket. Can't afford it!!
Posted 4/16/2008 4:33 PM (GMT 0)
I am so sorry to hear that, I wish you the best of luck.  I am not familiar with Cigna, not sure how they operate. I have always dealt with Blue Cross and Blue Shield, and to date havent had any problems - knock on wood. Any chance you can switch insurances, like in an up coming open season or something, would that help?

Posted 4/16/2008 7:20 PM (GMT 0)
Unfortunately, I only get 2 options where I work - Cigna & United Healthcare. I was told Cigna is better but it seems like they're not. When I called them to find out why it was denied to begin with... she started looking at all the attachments and said "Oh, I think we'll have to resubmit the claim as the doctors probably wasn't reviewed." Ugh! They just like to play games it seems...
Posted 4/16/2008 7:26 PM (GMT 0)
That's corporate America for ya! It sounds to me like someone just dropped the ball somewhere and didn't fill out the proper paperwork for you. I hope that's all it is. It seems to me you just have to keep on them, and hopefully it will all work out.
Posted 4/17/2008 7:46 PM (GMT 0)
Insurance companies are somewhat notorious for this practice. I heard from one doc that in the medicine world it's called "stalling", meaning an insurance company will deny the claim hoping that the patient will not question it, and just pay it. They may deny more than once to try to wear someone out and get them frustrated enough to just pay the darn bill.
Posted 4/17/2008 7:57 PM (GMT 0)
Or, hope that the patient will just give up on having the surgery! Which, in the long run could cost the insurance company even more money when the patient suffers complications from putting off the surgery in the first place! It just kills me what this country has come to. Just like for example my situation, my husband just changed jobs, and it was a huge rude awakening for us, we went from paying almost nothing out of pocket for our health insurance, my husband's previous employer paid almost all of it, we only had co-pays for doctor visits and prescriptions, his employer paid 100% of the premiums, which I know is almost unheard of these days, but now we are on the flip side of that, his new employer pays almost nothing, only $200 per month towards it, and the insurance is outrageous, we are paying almost $800 per month out of pocket just for premiums! It is crazy. How do they expect an average family to afford this! No wonder so many people in this country don't have insurance! And, people like us with heart problems can't afford to take that chance, it is just sick, and the insurance companies know that, they prey on it, they feed off of it. So, Gomer or whoever sits up in his fancy desk in his $2000 suit, playing golf every morning, while people like us have to worry wheter or not he is going to decide to let us live and have surgery, it is just crazy!
Posted 4/19/2008 6:25 PM (GMT 0)

Hello to all of you newcomers.  I am from the original thread.  I am a 38 year old mother of 5 from Illinois.  I had mine done at Edwards after having a stroke in September of 2006, then two TIA's while on blood thinners over the next year.  I had a horrible doctor when I had the stroke that kept telling me that my "episodes" after the stroke with horrible migraines and numbness were simply effects of my brain healing from the damage of the stroke.  I finally went for a second opinion after a year of losing my mind.  The new Neuro found two previous TIA's on my MRI from the day I had my stroke.  He did another MRI and it showed the two additional TIA's.  My brain wasn't healing, I was having TIA's.  So, in all I had 4 TIA's and the stroke.  I feel blessed that I am here and my children are finally getting their mom back.  It gets so much better once you are healed.  I can't believe it now that I am on the other side of this thing.

They had to close the whole.  The shunting was grade four and medications weren't keeping me from having those blood clots enter my brain???

I haven't been on this site in a while because I am actually BETTER!  I hope some of this helps.  You should read our previous thread.  It really has some great information.

I have United Healthcare and they were amazing.  I had to have the surgery and fit the protocol so it wasn't an issue.  I will pray that all goes well with your insurance.

As for the palpitations, mine were only when I was at rest.  They would even wake me up in the middle of the night.  My heart just wasn't very happy about the implant.  They put me on Toprol and it was like Heaven!  I recommend it to any of you having them.  I had a really bad time getting through everything and this website was a blessing.  The pain in the chest was really bad for me.  My doctor informed me that it was the TEE causing it.  No, it was the implant.  Others that didn't have TEE had the same "chicken bone stuck in the chest feeling".  I had the follow-up TEE and didn't have the same feeling.  It was the implant.  It gets better.

But, all that said and done, I no longer have migraines or the fear of another full blown stroke.  They did my follow-up TEE at the three month mark and the cells had grown over the hole and it was sealed.  I am officially healthy.  I didn't think I would get to this point.

Other quirky things that many of us have found since surgery is that we can sleep on our sides, before we couldn't.  I would have chest pains or get an instant migraine.  It was an odd side effect of my stroke.

I am off all the medication now, almost 5 months out!  Just aspirin 325mg forever...

I will keep all of you in my prayers and stay on the insurance company, the squeaky wheel gets oiled! yeah

Posted 4/25/2008 8:15 PM (GMT 0)
Well, Patched 1129, it sounds like you have been through it all! I am glad you posted to let us know that it does get better with time.  I am almost 5 weeks post-op now, and I feel great.  I just spoke to my cardiologist today.  My PVC episodes seem to be tapering off now, I am only getting them once or twice a day, and they are not nearly as intense as they were before.  I am back to the gym, and back to my regular routine there and at home.  I did a full hour on the treadmill today at the full pace I did before surgery, and I felt great!  I have dropped the 4 pounds I gained since surgery too. :) I have more energy now than I have had in a very long time. And, since the doctors upped my vitamin C to help me absorb the Plavix and added 325 mg aspirin, I think it is finally working, because I am noticing bruises, and I cut myself the other day and it took a while to stop bleeding, which is a good sign.  I go back to the doctor for blood work on May 1st, and a transcranial doppler on that day as well.  I still have trouble sleeping, I can't seem to sleep on my left side or my stomach at all, I can sleep on my right side but only for a short while and then I end up on my back. The chicken bone feeling is gone, thank God for that! I have just decided that I am not going to let this thing rule my life anymore. I am 34 years old, I have two children and a husband who need me, and I have alot more living to do! Spring is here,  I have gardening to do, and cleaning to do, and we pushed our vacation up - we are now going on May 24th! So, I refuse to let this thing beat me, or even slow me down for one minute any longer. I am tired of being poked at, of having doctor appointments and blood tests, I was ready to just call the whole thing off, but I have a couple more tests and appointments to go, so I am going to humor the doctors and get it over with, but I am going to move forward, take care of myself, my family, and enjoy life.  After stroke, multiple TIA, chronic debilitating migraines, PFO closure, complications, heart monitors, countless tests, there is one precious less I can take away from all of this -- life is way too short, you never know when it will be over, we have to make the most of what ever time we have left. :) ~

Posted 4/25/2008 9:22 PM (GMT 0)

Hi Amy,

We have a lot in common!  I feel like a normal person, finally, after a year and a half of hell.  I am going to London mid May for a week with my husband.  I can't wait.  You will continue to notice everything gets better. 

I didn't realize how truly bad things were until now.  I am like a new person.  And, this is the best spring I have ever had.  I feel so alive and grateful for absolutely everything.

I was 106 pounds, 5'3", when I had my surgery.  My palpitations were so bad that I lost 4 pounds, immediately.  I am almost back to normal as they come less frenquently and with less intensity.  I figured it was like doing aerobics half of the day for a couple of months.  Seriously stressful!  I felt like being sick was my life.  Now, I can't believe that was happening to me.

To not be poked and prodded!!!  It's a wonderful life!

My husband and kids don't look at me like I am sick anymore.  That is the best part of all of this.  I wish you and everyone else the best.

Have a wonderful vacation!!!

Posted 4/25/2008 10:03 PM (GMT 0)
Amy and Patched, it's so good to hear that you both are doing better and getting on with life. My procedure is on Monday and it will be interesting to see how I feel afterwards. I have finally been switched off the Coumadin and onto the Plavix and aspirin which makes me happy already! I ahve some trips planned as well so here's to everyone having a wonderful time!!!!

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