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About to have a PFO Closure

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Posted 6/1/2008 1:07 AM (GMT 0)

I have been advised to have a PCF closure performed after a TEE was performed last week.  I started having stroke-like migraines 10 years ago.  At that time, they had performed a TEE which had revealed a small hole.  At that time, they said that no treatment was needed since the hole was not very large. Since then, I have not had very many migraines until the last few months.  They are getting worse and I am getting more and more exhausted. 

 

I have been researching quite a bit on the internet about this since last week.  I am finding a lot of people out there who have had this done that don't seem to be recovering very well and seem to be regretting it.

Are there more pro's than con's on this?  If anyone could tell me their experience on this procedure, it would be appreciated.  I am only 33 years old and I am sure that sometimes age will make a difference in the recovery process. confused

Posted 6/3/2008 2:55 PM (GMT 0)

Hi Kenya,

I am 5 weeks post PFO closure and while it was tough for awhile after the procedure I am finally feeling good and getting my energy back. No matter what the doctors say I am convinced that it takes a good 5 - 6 weeks recovery time. Around week three I devloped an irritable heart which was a reaction to the procedure and the device and I ended up back in the emergency room. I was having nonstop PACs [Premature Atrial Contractions] which they were finally able to control with medication but it took 2 weeks of being on Toprol before the PACs stopped. Those two weeks were not very pleasant! I also developed a slight allergic reaction rash to the Toprol which we are trying to control but hasn't totally gone away yet but I'd much rather have that then the PACs.

I am also a migraine sufferer and have had them since I was a small child. However the reason they found my PFO was because I had an unexplained TIA in February. I did not want to live with the high risk of another stroke or TIA over my head so I did the procedure and even with the problems I had I would do it again in a heartbeat, a regular heartbeat that is, LOL! I figure 6 weeks of discomfort is well worth a lifetime of remaining alive. Also, just so you know I have had zero migraines or headaches at all since the procedure!

Good luck and let me know if you have any specific questions I can help you with.

Posted 6/18/2008 1:13 AM (GMT 0)

Cat MOM 5--

I have the same diagonisis as you did pre surgery.  I have an ASA and PFO.  I have not, that I know of, had any TIA's but need to go to a nuero to find out. 

I would like to have my PFO closed but not sure in my area they do this sort of thing.  Where did you go for your closure?  Did you get the Amplatzer device?

Thanks

A

Posted 6/20/2008 11:54 PM (GMT 0)
Hi Aussie,

I live in Illinois and had my closure done at Evanston Northwestern Hospital by Dr. Ted Feldman. He was recommended by both my neuro and my cardiologist. I have the Gore Helex device. It is a newer device that has less metal than the others. Good luck in getting your closure done!

Posted 6/26/2008 8:54 PM (GMT 0)
ANYONE, NEED some support.
I just had the PFO CLOSURE done with the AMPLATZER DEVICE through the heart catheter a week ago. First of all the procedure WAS NOT EXPLAINED to me very well, I ALWAYS heard it was a "SIMPLE PROCEDURE"! Well, my blood pressure bottomed out TWICE 48/38 and 58/38 when they pulled each catheter from both of my groin. and I bled out from my right groin and my blood pressure dropped again. THANK GOD, I was in a Critical Care Unit because they had no beds on the heart floor and my doctor DID NOT want to put me on a regular floor, in a regular room. I THANK GOD FOR THAT!
And I am SO DISAPPOINTED of how I feel. EVERYONE including my doctor told me I would feel like NEW PERSON by now. I still have the headaches, my headaches are like a dizzy headache, like a rubber band around my head to the base of my skull. I feel like I am in a FOG all the time. And my heart rate has been 100 to 105 in the MORNINGS. I thought all of this would be BETTER!
And late yesterday afternoon I started having tightness in my chest- it felt like someone sitting on my chest, I did NOT have ANY OF THAT right after surgery- this just started a WEEK LATER. I thought that was strange and NOT NORMAL, is it? I went to my GP doctor and had a EKG and blood work done and everything checked out NORMAL.
Plus, last night I did NOT SLEEP AT ALL- Plus, I took MEDS to sleep- which NORMALLY MAKE ME SLEEP. I did NOT CLOSE MY EYES until 6am this morning and then I ONLY SLEPT 3 hours. Has anyone experienced any of this? Is it normal post-op? and how long does it take to FEEL BETTER? I am on Plavix 75mg and Aspirin a day.
I was WONDERING IF PLAVIX can cause any of this symptoms. OR has it for any of you? I called my pharmacist and doctor and they both say no. And for me to KEEP TAKING THE PLAVIX.
And they say Plavix does not interfere with the other meds I am taking. I read up on Plavix online and it does say it can cause chest pain, anxiety and insomnia. And can interfere with other meds, but like I said my Pharmacist said with the meds I am taking IT DOES NOT.
So, what do I do? Just wanted to know IF ANYONE of you have had any of this? I would love to know your opinion on all of this.
Posted 6/26/2008 11:32 PM (GMT 0)
Hi TY67,

I am 8 weeks post closure with the Gore-Helex device. From my own experience and what I've read on this site and others, the doctors never give you the complete story. They like to say it's a simple procedure and recovery will be swift but I firmly believe it just isn't so. I also had my blood pressure bottom out twice, once during the procedure itself and then again when they pulled the catheters. They had a very hard time getting the catheter through my right vein and because I was awake during the procedure it was very, very painful. Consequently I had a quite large hematoma at the catheter site plus extensive bruising up to my belly button and down my leg. It took over a month for that to subside. After the procedure I had the heaviness in the chest as well as chest pains and the "chicken bone" feeling. This went on for several weeks. I was also very tired and had no energy for a good month. At three weeks I was rushed back to the hospital because I developed non stop premature heartbeats or PACs. They would go on for hours at a time. I since learned that developing arrhythmias is a side effect of having the device. I never had that problem before the procedure. My Cardiologist calls it an "irritable heart". I am on 50mgs of Toprol a day to try and stop the PACs. It has helped stop the long episodes I had but I still get them off and on throughout the day. I hope like heck that these things eventually go away but so far they are not. I also take Plavix and a 325mg aspirin a day. I am not having any trouble sleeping from the plavix but I am having a bruising problem. I'm covered in huge bruises and look like I just went through an auto accident or something. Many of these bruises have huge lumps in them like I was hit by something but I don't remember being hit at all.

Ok that's the bad of it all, the good is I finally have my energy back and am out walking with my hubby at night. Aside from the PACs I feel good! No tiredness, chest pains, heaviness etc. And I have had no migraines, actually not even a headache since the procedure! Take heart, it does get better. I firmly believe that it takes a good 2-3 months before you really start to feel better. I hope you are able to figure out why you are not sleeping and get that taken care of soon.
Posted 6/27/2008 12:28 AM (GMT 0)
Hey CatMom5,

THANK YOU SO MUCH! It does help to know there is a light at the end of the tunnel. I really do appreciate it, it helps to have someone REALLY UNDERSTAND what you are going through.
The thing that still puzzles me is the INSOMNIA. Did you ever have any problems with sleep after your procedure? OR do you know of anyone that has had trouble sleeping after the procedure? I feel real shaky from the inside out. That was one of my symptoms before surgery, and now here it starts again. Do you think it could be my body/heart adjusting to the device? IF you find out any info on that please let me know.
I am so sorry for ALL you have gone through- My heart goes out to you. I believe your right, I now believe it takes A LOT LONGER to recovery than what the doctors prepare you.
Please know that you are in my prayers for FULL RECOVERY and COMPLETE HEALING- THANK YOU AGAIN!
God Bless
Posted 6/27/2008 10:26 PM (GMT 0)
Hey Aussie,

I had the PFO closure done 9 days ago and I did have the AMPLATZER DEVICE. Have you had your procedure done yet? Where I live there are ONLY 2 doctors that do the procedure. Please let me know IF you have any questions. I will be praying for you.
Posted 6/27/2008 10:29 PM (GMT 0)
Hello Kenya,

Have you had your procedure yet? IF so, PLEASE let me know how it went and how your recovery is going. If you have not had your procedure yet please let me know IF I can answer any questions for you. I will be praying for you. Take Care
.
Posted 7/13/2008 6:22 PM (GMT 0)
Hi

I'm kind of new to this.

Last week a 14mm hole was found in my heart. A PFO. 

It was found after I was referred to a cardiologist, by my GP, complaining of fainting, severe palpitations and severe stroke like migraines with aura (which I have had since I was six years old).

I'm supposed to be having the hole closed in August some time...

But I'm really scared about it.

and I dont know what to expect

and I dont know how long it will take me to recover

and how long I'll have to stay in hospital

and if they leave any tubes and things hanging out of you for any length of time after you wake up from the operation (I'm not squemish at all, I just want to know)

and if there are many side effects.

I'd really appreciate someone's experiences and advice on this matter.

I'm 17 and I start my last year of secondary school in september and I feel really terrible and lost.

Thanks (hopefully)

Fran365

Posted 7/16/2008 3:44 PM (GMT 0)

Hi Fran365! I'm so sorry to hear about your symptoms and your PFO. It is a very scarey time you are going through. But you are not alone! If you have any specific questions please let me know and I would be glad to tell you about my experiences. I had my closure procedure done 11 weeks ago. I had the Gore-Helex device implanted. From what I have read, the procedure itself and the medicines used and legnth of hospital stay varies by individual doctor. You need to find out from your own doctor how he handles the procedure and all that it entails.

My procedure was done early on a Monday morning and I was released from the hospital Tuesday afternoon. I did not have any drugs to knock me out during the procedure other than a topical anaesthetic on the insertion sites. My doctor does the catheter through one groin and a camera through the other. Once the procedure was over I was moved to a recovery room which was where they pulled the tubes. How long the tubes stay in depends upon how long it takes for your blood coagulations levels to rise as they don't want you to bleed out once the tubes are pulled. It took about an hour for my levels to rise enough that they could pull the tubes. Once the tubes are pulled I had a nurse on either side pressing down on the sites until the bleeding stopped. I can't remember the exact time that took but it did take quite a while. Then you will have to be flat for 4-6 hours [6 hours for me]. I was up and walking that night though.

Pretty much everyone I've talked to that has had the procedure done has had some type of heaviness, pain in the chest or "chicken boning" afterwards. It can take a couple of weeks for this to go away. Also, pretty much everyone has said that it took them 5 or 6 weeks before their energy started to come back. It took me about 6 weeks before I could finally tell my husband that "I feel good" and we starting walking for excercize. You are very young however, so I'm thinking that you will probably recover very quickly!

As far as side effects? Well I'm not sure how many there are but I had one of the more common ones. about 3 weeks after the procedure I developed non-stop PACs or premature atrial contractions. If you read the device literature you will see that arrythmias can be a side affect. I've been on medicine for that ever since and it has only been the last 3 or 4 days where I haven't had any PACs at all. I am so hoping that they have gone away for good.

I hope this helps a little and like I said if you have any specific questions, let me know. Good luck on your procedure and I hope you recover very quickly.

Posted 7/25/2008 2:17 AM (GMT 0)
I am also scheduled to have my PFO closed in Aug. I have a cardio in Utah http://www.sorensenmd.com/ that this is all he does with different types of procedures and research. He has some great info on his site if you would like yo read up. I am also hoping it is not a bad recovery, one thing he did say - migraines can get worse in the month following surgery and for me well...that is not good news.

I can have 3-6 a week right now so that scares me! but I need this done. I am at a 80% stroke risk and have already suffered multiple TIA's, migraines, limb weakness, etc...

Let me know how yours goes!
Posted 1/18/2012 5:24 PM (GMT 0)
Hello Everyone:

I had a PFO closure done on December 2nd, 2011. This was done because it was discovered that I had had three minor strokes or TIA's. I was advised that the PFO closure couldn't positively be identified as the cause but simply that it might be the cause. I was further advised that since the PFO closure was a very low-risk procedure it was well worth having done, if only to eliminate a possible cause of the TIA's. I interpreted this as something along the lines of: "What have you got to lose?"

about two weeks after the procedure I began to develop PACs. They were mild at first but became more and more severe. They occur in an unpredictable fashion; on some days I'm fine, on other days they are severe. I went to the cardiologist, explained the situation and had a stress test done (on a treadmill) which showed no arterial blockage, and a blood test (which was normal). My cardiologist claims that PFO closures only rarely cause PAC's -- and here's where it gets tricky. He may be correct in his claim but for those of us who do, in fact, have PAC's after a PFO closure it's small comfort. My cardiologist went on to say that it would probably take about three months, the time it takes for the patch to be completely secured by the heart tissue, before the PAC's would subside.

I'm now about six weeks beyond the procedure and I'm still having PAC's. I'm obviously relieved that many of you have indicated that they go away eventually. At this point, real-life experiences are far more valuable to me than anything else.

Also: I have had migraines since High school (I'm now 66) and haven't had one recently. I am taking one adult aspirin and 75 mg of Plavix per day.
Posted 1/31/2012 1:11 AM (GMT 0)
I am scheduled to have a PFO closure next week (2/06/12). I am cautiously optimistic that it will be a straightforward and low risk event. I had a TIA in September 2011. Since then I have been to many specialists, finally seeing a cardiologist who confirmed it was from the PFO (I had no other risk factors). I am reading that many patients have been bothered with PAC's. I am curious how many folks have had this done and feel better soon, or if it is always so slow in recovery? I am 50 years old, and since my TIA I have struggled with an erosion in my stamina and energy. I guess I am asking for a success story, instead of horror stories... My aplologies to those who have suffered, I just don't want to go into this thinking complications are a foregone conclusion! Please reply and let me know. Thank you!
Posted 2/1/2012 3:54 PM (GMT 0)
ragolia1

I am glad to know you are scheduled for your surgery next week and soon the surgery will be behind you.  I do not have a PFO so cannot answer your questions from personal experience. I did have a TIA in 2010 but after 2 TEEs there was no PFO identified. No reason could be found to explain my TIA and I am fine now so I keep on moving on.

I did a search and found this particular thread is the one that popped up addressing PFO surgery and PACs,  Hopefully you will hear from other members with input to your questions.

I will be thinking of you on the 6th and I wish you well.

Kindly,

Kitt

Posted 3/7/2012 10:16 PM (GMT 0)
Can anyone help me with a respiratory question? Thanks in advance.

I had my PFO closure done in mid-December and my right kidney taken out four days later. This was done as the result of a massive stroke 11/27/2012 while doing wind sprints at the beach. My stroke revealed holes I've had in my heart since birth but since I'm in great shape and drug free, so my body waited until I was 48 to really attack me. I collapsed in a porta-john. (You can't make something like that up!eastersnot.blogspot.com/2011/12/two-weeks-three-life-altering-events.html). I got out of the hospital around Christmas, was back in the gym by the second week of January.

I was allowed full cardio two weeks post release and I'm back at 45 minutes on the Stair Master. My settings: 200 pounds, 47 years of age, Level 7 to start on Fat Burner (I'm 6'7" tall so I don't look TOO fat). My issues with my closure are as follows: Initially, during the warm up, I incurred some really odd beating in my heart which I worked through by breathing deeply and rapidly in and out for about 3 minutes or so (seemed like an eternity). It's since stopped and I've scaled back how quickly I jump into my routine, starting at about 50% of my finish for the first 1.5-3.0 minutes. After that then, I can move toward my finish. I cover 260 steps or so (used to be 320, I'm getting there) with no heartbeat issues. I'm at about 60% of where I was prior to my PFO/Stroke ordeal.

My issue, and I've yet to see it addressed, is my breathing. I sigh so regularly now people ask me 'why' and I hadn't even noticed it initially. Between that and yawning, another way of the body saying "More oxygen please", I've become quite aware of it myself. It started recently and I wondered if it was a side effect of Coumadin and/or my operation. My cardiologist has stated "it's neither". I thought I'd turn to this forum. I simply feel a little short of breath now and then throughout the day. Oddly, when I'm working out, I feel fine. Usually it's just the opposite.

Overall, thus far, I'd still call the operation a success as I've had my heart beat up pretty high with no lapses and as I said, the other beats have largely died down. I'm wondering if maybe I was getting MORE oxygen through the various openings in my heart prior to my closure, making me feel like I'm not getting enough now? Or, perhaps I'm working so efficiently that I'm moderately hyper-ventilating? I've had one TEE done two weeks after my closure (sooner than expected as I'd not taken Coumadin after my release) and I was told it looked great. Only the breathing is an issue at the moment. Thanks for reading and sharing.
Posted 3/7/2012 11:44 PM (GMT 0)
MJRydsFast

Hello and welcome to HealingWell.  I am very glad to hear your surgery was a success.  I am wondering what medications you are on post-surgery other then Coumadin ?  Keep in mind that a "little shortness of breath" is a symptom that you should have checked out by you physician. 

Wish I had better input for you but considering what you have been through I hope you talk with your Dr.

Kindly,

Kitt

Posted 3/8/2012 4:54 PM (GMT 0)

stkitt said...
MJRydsFast
I am wondering what medications you are on post-surgery other then Coumadin ? Kitt

Just Coumadin. Occasionally I do an inhaler (Proventil) for issues with allergies but I've never had any issues from it before and I only take it as needed, less than once a day during allergy season and usually only 1-2 months out of the year or in emergencies (cat house, moldy basement, etc). They expire before I ever get through them completely so, just Coumadin right now. Thanks for the well wishes and info. Primary care doc isn't an option at the moment.
Posted 3/20/2012 2:48 PM (GMT 0)
I had a PFO closure done on 2/17/12 in South Florida by Dr. Cubeddu. I am 48 years old and I had a stroke in May 2011 at a theme park in Orlando while chaperoning my daughter's field trip...horrible for kids who witnessed it. As part of the follow-up testing (TEE), it was discovered I had a hole in my heart. Since all other health concerns were negative, it was determined that the hole was the cause of the stroke. The procedure was honestly not bad at all. I was very scared after reading many of the posts. I was awake through the entire procedure and even watched on the monitor. The hole was closed with a Gore-Helex 25mm occluder. The worst part of the procedure was lying flat and still for 6-8 hours after surgery. It's better if you try to sleep through this part as the time just drags if you are awake...trust me! I was kept overnight in the hospital, and discharged the next day with orders to take 75 mg. of Plavix for 3 months and 81 mg. of baby aspirin for the rest of my life.

The recovery has been relatively uneventful. I have had a few heart palpitations and a few days where my chest feels heavy. But, honestly, I thought it would be worse. I did develop a pea-sized lump in my groin near the catheter site, but that has slowly disappeared over the last few weeks. I had a follow-up Dr. appt. at the 2 week mark and will return for follow-ups at the 3 month, 6 month, and 1 year points. Otherwise, I am returning to my normal "crazy" life of being a Mom to two young children. I feel a great sense of relief in knowing that I am no longer a ticking time bomb for another stroke.
My advice to anyone having a PFO closure would be to find an Interventinal Cardiologist who performs these closures on a routine basis (about 10 or more a month). Also, to pay attention to your heart before the procedure. I noticed that I had palpitations and occasional heart racing before my procedure. Knowing that made me a lot less paranoid after the closure. It is just human nature to pay attention to every little feeling when you know you have a device in your heart. Knowing the way my heart functioned "normally" before the procedure, helped me to be less obsessed over every little beat after the closure.
Posted 3/20/2012 5:22 PM (GMT 0)
Thanks. Every little experience on here from others helps. I'm at 87% of my former self on my cardio routine (280 steps vs. 320 in 45 minutes). My weight limit has increased now to 40 pounds to lift. No scares from my heart thus far that I can tell but some other odd stuff as a result of my two surgeries (my cancerous right kidney was taken out four days later).

I have noticed over the weeks that I cannot swim as far underwater now as before. I seem to run out of breath faster underwater. I'm making progress so I can be healthy next time I try to die. tongue
Posted 3/25/2012 11:31 PM (GMT 0)
Hi Healing Well Readers, I am interested in hearing your stories and experiences about Secundum atrial septal defect. I was just diagnosed with a hole that is 1.15 cm large. I am a candidate for the closure device but haven't been able to decide whether to have the hole closed by the closure device or the traditional surgical method. Both procedures sound horrible to me and I really don't want either one but not closing the hole is not an option.

I am a healthy 43 year old woman with no symptoms. I exercise regularly and have delivered four children naturally with no complications. I have low blood pressure that occasionally causes me to be dizzy if I stand up to quickly, but other than that no symptoms. I am thin; 5'6 125 pounds and have been told by the doctors that I am a surgeons dream- young and healthy.

I really don't know which procedure to choose. The stories on here really scare me. I work outside the home and have a very busy and demanding career. Taking time off from work will, of course, be a nuisance but is unavoidable.

Can someone just share with me what you think I should do.

Troubled,
Posted 3/26/2012 1:13 AM (GMT 0)
I'm like you in that I am/was/will be again in great physical shape. Of your two options, I can only speak of the device. I've had no problem with mine thus far and at 48 (very soon) I can't afford a lot of down time. I'm running out of life! I'd like to have one kid let alone four.

Closure wasn't an option for me as it was discovered that I had kidney cancer and my kidney threw a chunk into my blood stream where it passed through the hole in my heart and caused the stroke. I would have had more if I hadn't gotten that closed. There's been some breathing adjustments for me in that my oxygen levels feel odd at times. I yawn more and sigh a lot when I'm passive but during activity or at the gym, I'm fine, both there and after for a while. I haven't had chest pains nor do I have any scars from the septical occluder implant as they went through the femoral artery. If not for my kidney, I'd have not had a visible scar so if you're wanting to avoid the scar, I'd opt for the closure device.

You sound attractive (hot, being honest) so my guess is you don't want scars. I'm at 87% of my cardio from pre-surgery (mid December, I heal really fast), swim is back to normal now but weights, due to kidney surgery, are coming along much more slowly but it's a blessing in that I have to lift light, increase my reps and really watch my form. Good luck with your decision.
Posted 3/28/2012 1:36 AM (GMT 0)
Hello


I have had 2 strokes in the last 3
weeks they say i have a PFO my heart dr tells me no more strokes so sunday have a TIA my dr is out of town for a week that is about 7 day before i can see him i called his office monday to tell them they say we will put a note in your file and let him know he wont read test till he get back to see how big the PFO is should i just sit here till he get back or get a new heart dr dont want to have no more strokes
Posted 3/28/2012 4:34 PM (GMT 0)
Great sharing by l here in this thread and I am learning a lot too.

dave,  I am going to talk rather tough here - advocate for yourself and don't just sit there waiting for the missing Dr. - Find a new Cardiologist now.  Get to an ER the minute you start to notice anything unusual ! If necessary call 911.

Given that time is an absolutely crucial factor in successful evaluation and treatment of stroke symptoms , time-frames must be established to guide an institutional response.  It is critical that the initial evaluating physician carefully establish, as closely as possible, the exact time of symptom onset. 

I am shocked to read your Cardiologist did not give you your results re the PFO or start looking for other reasons for what caused your strokes.  Also did he start you on any meds ?

I wish each of you peace.

 

Posted 3/28/2012 5:32 PM (GMT 0)
Dave, I too am a bit surprised by your doctor's inactions but as they say, there are two sides to every story. Three weeks apart though and the fact that you know what the problem is now does sound as if he should have assigned you elsewhere. Good luck. Go with your instincts from here.
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