PFO Closure - Open Heart or Transcatheter 2

Everyone please feel free to continue to post here and share with each other....

Thank you ~ Elisha

Hello, It is me, Amy, again. I thought I would give an update on my recovery progress.  I am on day 12 of post-op from my PFO closure procedure, and I can honestly say, I am starting to feel like a new person!  I have my energy back, I am walking 30 minutes on the treadmill at 3mph on a 5% incline, not close to my usual 4mph 10% incline for 60 minutes, but I will get there soon!  And, it will be 3 more weeks before I can lift more than 5 pounds of weight, lift a laundry basket, groceries or anything like that, but I am doing all of my other daily activities with little effort, and driving by myself now with no problem at all.  I feel really good.  No light headed ness at all, and that "chicken bone" feeling is getting less intense too.  i still can't find a comfortable sleeping position yet, I usually end up flat on my back half way through the night, but I am sure that will get better with time too.  So, I am glad I had the procedure done, and glad that my risk of stroke is greatly reduced now, too! So, for anyone out there who is hesitant about having their PFO closed, feel free to reply back, I am willing to answer any questions you might have for me, I have gone through, and done a ton of research on my own on the subject as well. Good luck to anyone out there who is going through the same thing, I just hope you don't have to go 'numb" like I did, and scare your family, and lose sleep, although it is the road you go down with this congenital heart defect, isn't it? ~Amy~

Hi, I am a 51 year old previously very healthy woman that had an unexplained TIA on 2/20/2008. After every test under the sun it seemed my doctors were ready to send me home from the hospital thinking that it was a weird migrain variation and maybe not a TIA. I have had migrains with aura since I was 8 years old but can control them as long as I take 3 advils at the onset of the aura. Luckily a very stubborn neurologist had me take a TEE before she would release me and it showed I have a large PFO with an ASA, so TIA it was. I am currently on Warfarin and aspirin. My cardiologist has referred me to a "super specialist" that is supposedly the guy to see in the area if you have a PFO. I see him on Friday and am hoping that I will be able to get the closure procedure done. I'm totally scared about it but on the other hand I really don't want to be on warfarin the rest of my life either. I'm happy to see so many people here that have had the procedure done but also worried about the problems you guys are having with recovery. I'm also worrying that my PFO will be too large for the closure procedure especially since I have an ASA as well. Basically I guess I'm scared that he won't do the procedure and I'm scared that he will do the procedure.

Thank you, cabikerun. May I ask why you had to have the surgical closure?

Hello PFO people! Amy is back! I wanted to say hi, and give you an update. I had a TIA this morning! I am awaiting a return phone call from my neuro and cardio...wish me luck. I am sure I am up for a bunch of tests today, seeing as how I had my pfo closure done on 3/17, I know that I am at greater risk since I am resistant to aspirin and plavix and am only getting about half of the actual dose into my body, but this is very discouraging, I had the surgery to avoid this! I am nervous, and upset right now. I was feeling really good, but the past couple of days I started having heart palpatations again, and getting pressure headaches. I will be sure to post again after I see the doctors to let you all know how it went.  ~Amy~

Amy, good luck with your follow up. i have read your posts and about the device, but I am not up on the Gore-Helex one :). Sorry to hear about the pressure headaches. Very interesting, as I used to get a bit of pressure on the back of my head but it wasn't a migraine... never had migraine problems. That pressure is gone now, as well as the light headed feelings (probably from high level shunting and oxygen desat).
I will wish you the best in your follow up with your neuro. What kind of things happen during your TIA events? Are they visual or motor or???

to cabikerun: thanks for your concern. my 3 TIA episodes were all very similar, one actually resulted in a real stroke, confirmed by MRI back in November. Typically I get numbness on the left side of my face, blurred vision in my left eye, and it only lasts less than ten minutes. The one in November lasted 45, and also caused weakness in my left arm and leg, and ringing in my left ear at the time, I am left with permanent partial hearing and vision loss on that side.   The last MRI confirmed some permanent damage, it also showed what the Neurologist called 3 "spots" on the brain, that he says he typically sees with people who suffer from chronic migraines.

Amy, so sorry to hear of your struggles. I really hope you get this all under control. Brain attacks are horrible events. I also hope you see some recovery from your previous events. I am sending you positive thoughts and hopes.

Well I just got back from meeting with the "Super" specialist and I am scheduled for the closure procedure on the 16th. He is going to try and use the Gore-Helix device but if it doesn't seat like he wants then he will switch to the Amplatzer. Let's hope it seats well!

Amy, I hope you are feeling better today. I'm also sending my most positive thoughts your way.

Thank you cabikerun for telling us about your surgery. I can't imagine having to go through with what you did but it sounds like you are on your way to full recovery.

Oh--I forgot the most important part, if it turns out after all these tests that my symptoms are not better, then they will probably recommend surgical removal of my closure device, and closure of my pfo through stitches/patching it surgically, my neuro says that they would not crack my chest though, they would go through the side of my rib cage, newer procedure, less invasive, but still risky. I haven't been able to find much information online about it today. Still searching.

yes, thanks, the more information, the better at this point. I am one of those who would rather be "armed" with as much knowledge as possible than to just trust my doctors, I have been burned before, not by these two doctors, but by a former family doctor who missed this entirely, and missed something serious in my 6 year old son, so now I am very cautious about educating myself about these things on my own, even though I am told I have the best doctors in my area, if not in the country.  I did speak to my cardiologist last night for about 30 minutes on his drive home from clinic, he actually gave me his cell phone number now, and told me that any time the office does not get back to me with an answer that I should not hesitate to call him right away, I feel funny calling his cell like that, but he is that kind of guy who cares that much, which is refreshing in this day and age of HMO's and huge practices where you get shuffled around like cattle.  My cardiologist is younger, brilliant, but sometimes too smart for his own good, I think.  He says while he agrees with most of what my neurologist is saying, and the tests he wants to run, he stands by the Gore-helex device, he has been using it for quite some time, he even made several calls to his colleagues in other parts of the country who do even more PFO's than he does, and they all agree that it is the best device on the market for PFO closures, especially for people with nickel allergy because it has the least amount of metal in it, the Amplatzer has the most, and the Gore Helex is the easiest  for them to maneuver inside the catheter, and easiest to retrieve if need be, it also has the least instance of clot formation post-op. So, he is standing  behind it 100%. He at this point does not think I am having these issues due to my nickel allergy, but is curious to see what the blood tests will show. He thinks my heart palpitations and other symptoms might be due to something else, I asked if it's possible the device has slipped or is defective in any way, he says it is highly unlikely, but that is the symptom I would be having if it were. So, I am going in next week for all those tests, and we will see. He wants me to have a TEE after the trans cranial doppler is done, to rule out any other heart issues, and to take a closer look at the device, because he said that is really the tool they like to use, and the only definitive test to give them the best/most certain answer of what is wrong.  I am nervous about having the TEE done, the only one I had done was during my PFO closure, and I was out cold under general anastesia! 

Thanks catmom5 for the words of encouragement. I really appreciate the input. And, best of luck on your surgery. same with that, I didn't feel a thing, and afterwards, my leg really wasn't that sore, they go right into your right groin, right in the bend of your leg, where your underwear would hit, the incision is more like a puncture wound, only about half an inch in length, and they dont even close it with stitches, they just use a pressure bandage, like an ace bandage, but adhesive. and there is gauze underneath. I only had a small amount of blood on the gauze, even being on Plavix nonstop. I was really nervous about taking the bandages off the day after I got home, afraid I would open it up or something, but don't be, it was totally closed up, they put this huge bandage all the way around your leg for such a tiny puncture! They make you lay flat for 4-6 hours after surgery, so no bathroom allowed, which means you have to use a bedpan, which I had a lot of trouble doing, they almost had to cath me, but I held it until the 4 hour mark, and they brought a potty chair to my bedside and let me use that, it was much easier sitting up. (too much info?!:) smile) I think it was the whole stigma of "dont wet your bed" as a kid thing that I couldn't relax and just do it! My bladder was killing me too after that long. You're gonna feel pretty tired and get a lot of dizzy spells the first few days, and you will probably notice that you feel strange when you put your head down, especially to look at something on paper, or to tie your shoes, things like that, but after 4-5 days these things will go away. You may also find that sleeping positions are tricky the first couple of weeks, but that too will work itself out, it just takes a little time for your body to adjust. The doctors don't tell you this stuff, either! Feel free to ask me any questions! ~

Hi catmom5, no that is the nice thing with Plavix, no eating restrictions, and it isn't difficult to regulate like Coumadin, and if you have any trouble with migraines Plavix does not aggravate migraines in any way, but Coumadin has been shown to make them much worse for some reason. Yeah, I had the option to stay awake for mine as well, but they do the TEE the entire time, that is 2 hours, and the thought of laying there completely still with that thing down my throat and the other thing up my leg for two hours while they did this, with all the possible complications that they talk about right before they take you in there really freaked me out, so I opted to be knocked out, and I am really glad that I did.  Altough, I bet your recovery will be easier if you opt not to have general anastesia, and you may not have to be in ICU overnight like I was, not sure what determines where they put you and for how long. But, I just know I would not have done it any differently. It is a very individual choice, I think. And, if you are comfortable staying awake for it, you are a much braver person than me, I give you alot of credit - you will have to give me a play by play after, it will be really cool to be able to watch it on the monitor when they place it in your heart, or it could be a little scary, too. But, being on valium you may not even care!