PFO Closure - Open Heart or Transcatheter 2

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els
Veteran Member

Date Joined Oct 2005
Total Posts : 4016

Posted 3/9/2008 1:36 PM (GMT -6)

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

Thank you ~ Elisha

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 3/24/2008 9:39 AM (GMT -6)

Hi Everyone, my name is Amy, I am 34, I just had my PFO closure procedure done 1 week ago today, through cardiac catheterization, under general anastesia. My PFO was 10MM, the closure device was a Gore-Helex 20mm. I had two TIA episodes back in Oct-Nov07, went to a Neurologist, he ran a ton of tests, bloodwork, brain MRI, cardiac MRI, bubble studies, trancranial and cardiac dopplers, and that is how they found my PFO. I have suffered from chronic migraines since I was a teenager. I am currently taking Topamax and Plavix, which doctors are continuing post-op for at least 6 months. I have two unique issues with my PFO closure: 1. I am allergic to Nickel! I cannot wear any jewelry that is not silver or gold or I break out in a serious rash. For those of you who do not know, all of the devices on the market have a nickel-titanium alloy in them, but my doctor did a lot of research and settled on the Gore-Helex device, because it supposedly has much less "nitinol" than others on the market, we shall see. ANyone else out there with the nickel allergy? 2. After many blood tests I was found to be genetically resistant to both aspirin and Plavix, which means my body can't absorb them properly. So, I take 1000mg per day of vitamin C along with my Plavix to help me absorb it, and I still don't get the full health benefit of the Plavix. Anyone else with this problem? my only other option is Coumadin, but they won't even consider it with my history of migraines, the difficulty regulating that medication, and the bleeding issues it involves. So, here I sit 1 week post-op. Don't get me wrong, I am glad I did it, leaving it open wasn't an option for me, especially since I couldn't absorb the blood thinners, being a wife and mom of two young kids, I couldn't risk a full blown stroke, or a heart attack. But, I thought that 7 days would be the magic number, I thought I would wake up today and feel like a new person! But, I still tire easily, I still get light headed, or heavy-headed, I still get little flutters in my heart, I still get that chicken-bone feeling in my chest, I get a feeling of warmth/heat in my chest also sometimes. Does anyone else get this? My next checkup and Echo is on 4/11. Do I wait that long to feel better? My doctor told me I could get back on the treadmill and start walking today, and in 3-4 weeks I could start housework, and light to moderate weight and resistance training at the gym. I was really active before this, I am eger to get back to my life! Do I call him and tell him how I am feeling, or is all this normal, and do I need more time? I am afraid to even drive a car yet! Help!

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 3/28/2008 4:30 PM (GMT -6)

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~

els
Veteran Member

Date Joined Oct 2005
Total Posts : 4016

Posted 3/31/2008 6:59 PM (GMT -6)

Hi Amy, I just wanted to stop in and welcome you to Healing Well forum. We are happy to have you join us here. I hope you find this site informative and supportive. Keep posting and take care

Elisha
Co~Mod: Depression
Moderator: Heart & Cardiovascular Disease
http://www.healingwell.com/donate

CatMom5
Regular Member

Date Joined Apr 2008
Total Posts : 88

Posted 4/2/2008 1:48 PM (GMT -6)

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.

cabikerun
New Member

Date Joined Feb 2008
Total Posts : 15

Posted 4/2/2008 2:33 PM (GMT -6)

Hey CatMom,
you are doing the right thing by pursuing closure. They are able to close very very large defects now, so don't worry until they tell you they can't. Mine was 1.5 inches, and altho I had to have surgical closure, it wasn't because of the size.
Best of luck to you.

CatMom5
Regular Member

Date Joined Apr 2008
Total Posts : 88

Posted 4/2/2008 3:15 PM (GMT -6)

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

cabikerun
New Member

Date Joined Feb 2008
Total Posts : 15

Posted 4/2/2008 8:14 PM (GMT -6)

Hi CatMom,
originally I did not want to have a permanent device inside my heart w/o a long history or established clinical trials, being pushed for expanded use.

I entertained device closure, but thru research also consulted a surgeon. The surgeon re-did the TEE I had, as the one done by the doc that would have done the device was not well done. It turned out I had a very large, long tunneled PFO with not a lot of rim, and the septum was so thin/necrotic and wildly swinging (nearly a giant hole) that a device would have been risky at best. The surgeon had to remove the septum as it was not able to hold sutures (he touched it and it shattered), so he patched the hole instead of sewing it closed. I had a high degree of shunting right to left, and had cases of oxygen desaturation, so I figured it was large and patent.

4 weeks later only a sore sternum :), but I am getting better. My general cardiologist and neurologist say I did the right thing. I had 2 small strokes, and am young and an athlete. The surgery is easier if you are healthy and strong going in, true with either option I suspect. Most people do not have to, nor choose surgery for PFO / ASD closure anymore.

Hope this helps. Best of luck to you!!!

Post Edited (cabikerun) : 4/2/2008 9:04:29 PM (GMT-6)

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/3/2008 9:53 AM (GMT -6)

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~

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/3/2008 2:55 PM (GMT -6)

Hi. Thanks for your replies. I have the Gore-Helex Septal Occluder device. If you read my earlier post on my surgery you can get the details, I have a couple of complications related to my PFO. I have had true migraines since I was a teenager, for about 20 years now, sensitivity to light and sound, severe pain in the top and front of my head, nausea, aura. These pressure headaches I have had since the surgery are entirely new, and nothing like a migraine in nature. I think the only reason I am not getting migraines is because I am taking Topamax. I have not heard back from my Cardiologist yet today, he has been in surgery, but I just came back from my neurologist, they are running further blood tests to see if I am doing any better with absorbing the Plavix along with vitamin C therapy. (it is doubtful) I also had a brain MRI today. I will have a follow up with the neurologist to go over the results tomorrow. They will probably at the very least up my dosage of Topamax, and discuss adding another blood thinner I would think.

cabikerun
New Member

Date Joined Feb 2008
Total Posts : 15

Posted 4/3/2008 3:10 PM (GMT -6)

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???

CatMom5
Regular Member

Date Joined Apr 2008
Total Posts : 88

Posted 4/3/2008 4:03 PM (GMT -6)

Oh Wow, Amy, I'm so sorry you had another TIA. I'll be very interested to hear what the doctors say. I hope you feel better soon!

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/3/2008 5:07 PM (GMT -6)

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.

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/3/2008 5:08 PM (GMT -6)

to CatMom5: thanks for your concern, I will keep you posted! Amy~

cabikerun
New Member

Date Joined Feb 2008
Total Posts : 15

Posted 4/3/2008 6:18 PM (GMT -6)

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.

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/3/2008 6:25 PM (GMT -6)

thanks cabikerun, I appreciate the positive thoughts, I thought my plight was scary, but I cant even imagine what it must have been like, going through open heart surgery, and having all of the issues that you had. That was my worst fear as well, that there would not be a sufficient enough rim around the PFO, that my septum would not hold up, I cant even imagine what that must have been like. I am glad to see that you made it through safely, and seem to be doing well, and hopefully all of these things I am going through will work themselves out as well. I know that when they close the PFO through cardiac cath the body likes to form clots around the closure device until your heart tissue grows around it, that is why they keep you on things like Plavix for 6 months, unlucky for me that the Plavix does not seem to be working. So, I am still at risk for several months. We shall see. But, thanks much for the positive input, I appreciate it. It is really nice to have people to write to who know what I am going through.

CatMom5
Regular Member

Date Joined Apr 2008
Total Posts : 88

Posted 4/4/2008 3:57 PM (GMT -6)

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.

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/4/2008 5:41 PM (GMT -6)

Hi Catmom5 & cabikerun, catmom5- best of luck on your surgery on the 16th, I will be sure to keep you in my thoughts on that day. I am sure everything will be just fine. I had my follow up with my neurologist today. Thankfully the MRI did not show any new activity to worry about, but the bloodwork came back the same, I am still resistant to the Plavix, the vitamin C therapy still is not working, so he is upping my dosage of vitamin C to 2000mg per day, and adding 325mg of aspirin to the mix. (yay) I guess I will be popping some Tums! He is concerned about the pressure headaches, and agrees that I definitely had a TIA yesterday. the heart palpitations and other symptoms I am having lead him to believe that I may be having an adverse reaction to the closure device, most likely due to my nickel allergy, he ran a bunch of blood work today, they ordered me to have an event monitor put on which I will go to my cardiologist for next week, and I have to have another transcranial doppler with bubble study done to look for new shunting next week as well. So, all those wonderful tests that I thought I was done with prior to surgery have reared their ugly heads again! I know, deep breaths, one day at a time....smile. Glad I have this forum to unload my thoughts in.

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/4/2008 5:44 PM (GMT -6)

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.

cabikerun
New Member

Date Joined Feb 2008
Total Posts : 15

Posted 4/4/2008 8:42 PM (GMT -6)

buffalo/amy. Hmmm about going thru the rib cage, seems they would still have to cut something to get access to the heart. I do hope they don't have to go in and remove that device. That would royally stink for you. All positive thoughts for you. I should ask my surgeon his thoughts on the rib approach. I know there's a reason he doesn't do it. He does minimally invasive procedures (my scar is maybe 5-6 inches), and does some amazing things with kids/babies. He is also at the forefront of robotics. If you would like, I could get his opinion, because I know he keeps up on the latest.

Post Edited (cabikerun) : 4/4/2008 7:46:49 PM (GMT-6)

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/5/2008 6:51 AM (GMT -6)

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!

CatMom5
Regular Member

Date Joined Apr 2008
Total Posts : 88

Posted 4/5/2008 8:31 AM (GMT -6)

Oh Amy, I'm sorry to hear about all of this but but don't worry too much about the TEE. I had one done when I was in the hospital and the worst thing about it was the nasty tasting numbing stuff they spray down your throat. They give you a light anesthetic which actually knocked me totally out. I remember nothing about the test itself, just remember waking up and them telling me I had a hole in my heart. Good luck on the test and I so hope that they find that the device is in place and everything is good!

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/5/2008 10:01 AM (GMT -6)

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! ~

CatMom5
Regular Member

Date Joined Apr 2008
Total Posts : 88

Posted 4/5/2008 8:50 PM (GMT -6)

Thanks Amy! According to my doctor though, I will be awake [yikes] and can watch the entire procedure if I want to. He said they give something mild like a valium and that is pretty much it. They did tell me about having to lie flat for 4 hours and no getting up for potty breaks. Hmm, do they make you go potty before they let you get up? I am known for having a cast iron bladder. I can make the flight from Chicago to Tokyo and then the bus ride from the airport to the hotel without using any nasty airplane or public bathrooms[14-15 hour trip] so 4-6 hours is a piece of cake for me! Thanks for the tip about the large bandaids. That makes sense. I have been on coumadin and aspirin since my TIA but they are switching me over to Plavix and aspirin 5 days before the procedure and I will be on Plavix for 6 months afterwards. Are there any restrictions on eating or drinking with Plavix like there is with coumadin? We didn't really take about that. Thanks again!

buffalogirl18
Regular Member

Date Joined Mar 2008
Total Posts : 41

Posted 4/6/2008 7:20 AM (GMT -6)

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!

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