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Has anybody had a PFO that closed after 1 yr.?

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Posted 1/9/2009 3:40 PM (GMT 0)

Has anyone had a PFO closure that closed at the one year f/u or after 1 year? or maybe it never quite closed? What did you do about It?

Posted 2/22/2009 6:58 PM (GMT 0)
I'm not sure what you mean. PFOs don't close on there own within a year. I know the doctors tell you that you have had it all your life and that the day you had a TIA or stroke is the first day it flipped open and sent a clot to your brain...atleast that what they told me. I didn't want to take the chance of having another stroke -especially if it could be disabling my body movement, speech etc. PFO closure via cardiac caterization was what I did at Mt.Sinai in NYC. I recommend it if you want to stop the chances of recurring strokes, etc.
Did that answer your question?
Also, my closure was in March 2006 and I'm great.

D
Posted 2/23/2009 3:04 AM (GMT 0)
Hi D-

I was asking if anyone out there if they have had PFO closure surgery ( a device placed in the heart, to close the hole) that was not 100% successful. I had my PFO closed via cardiac cath on 6/08 and at my 3 mos & 6 mos. bubble test/ultrasound, the results indicated that some bubbles still pass through indicating that a PFO is still present. I was curious how many people are out there who have been told the same thing, and if their hole closed with time? and if not what did they do about it?

Sorry for the confusion. I am glad you are doing well. Did you have a stroke prior to the surgery and if so, how old were you at the time? What type of device did they give you? How big was your PFO? Do you still take any medications? Have you had  any concerns at all? Sorry for all the questions but i think it helps knowing what others have gone through too.

Thanks

RF1

Posted 2/23/2009 3:02 PM (GMT 0)
rf1,

I had my closure done on 4/28/2008. At my 6 month follow up my hole was still open. I'm coming up on my 1 year and am hoping like mad that it did close because from what I've read if it's not closed by 1 year it will not close. One study I read regarding non closed PFOs post 1 year indicated that there was a 4x chance of further strokes and TIA's. Several articles indicated that a second device is often inserted on top of the first device to try and close the open spot. Others indicated that open heart surgery was done to remove the initial device and close the hole. I'm not sure what the answer is as my cardiologist didn't want to address the issue until after the 1 year mark. If you find out anything different please let me know!
Posted 2/23/2009 3:55 PM (GMT 0)
yes CATMOM I will, I too am sick over the thoughts of going down that road again. I have done lots of research and talked to my neurologist who thinks that even if the hole is reduced greatly my chances of having another stroke is smaller than in the past. I have also stopped taking my birth control pills which further reduces my risk. I have seen some data suggesting a 4x greater risk but that makes no sense if your on meds and reduced the hole size. if anything, a small TiA could occur but a large clot could not fit. I do have questions about if a clot could get stuck around the area where the device is because the area is not sealed properly, causing a clot to form in the atria? I know that if they can wait till one year and not worry till then, that I can't be that much of a risk. I am just praying. It just does'nt seem fair, does it to have gone through so much and to not just get back to enjoying our lives. I will pray for you. please let me know what comes about.

RF1
Posted 3/8/2009 4:34 AM (GMT 0)
I had my first PFO closure July 25, 2007 and found out that I even had a PFO because I went in to my primary doctor atleast once a month complaining about my migraines and she had just decided to to a regular EKG in the office because my heart rate that morming was pretty high  and we already knew that I had a heart murmmer, however being a primary she really wasn't that familiar with reading EKG's however she said she really didn't like what she saw on the EKG so I should see a Cardiologlist as soon as I had the chance.  Well, honestly I let several months past until I decided to go I was a runner and not out of breath so I figured if it wasn't broke why fix it? Right?  Wrong?  I finally made an appointment and was in the hospital two days later having surgery well what I failed to tell you at the beginning of this story is that 3 years prior I had 28 TIAs and funny thing in the hospital they never picked up my PFO.  Which to this day I'll never understand.  Well, it is now March 2009 and I will be having a 2nd closure on April 2nd.  It is a seperate hole all together however it is very close to the first one and going to be very hard to do because it is located right near the opening of my Aortic valve my surgeon said that he will go in but for they will do a TEE (they did one in October but I just had a bubble study Monday and the hole looked bigger and since there is a new device out now) first and then determine how he will go about doing it because of the locate if he feels that at antime it may cause me complications later in life he is not going through with it and will pull out.  He is also only using General Anestesia(sp) but the risk of putting me completely under could put me into cardiac arrest. Just keep me in your thoughts and I'll keep you posted.  Heart Disease is horrible and we need to remember it's the number one killer in women I'm only 42.  God Bless!!!!!!  To all of you. 
Posted 5/8/2009 3:32 PM (GMT 0)
I had mine closed March 12,08. My headaches stopped and so did this odd pain I had in my left upper arm and left upper leg. Well, after maybe 4 months all of my symptoms started back up. For some reason I did not think it was due to my heart...I figured once the hole was closed it was closed. So, after several trips to the neurologist and my primary they suggested I go back to the cardo doc. Went there May 6, 09 and found out the hole did not close. I go back in for second closure on the 26th. To bad we don't get a warranty for things like this! smilewinkgrin
Posted 5/8/2009 7:39 PM (GMT 0)
 

Dear WA2- sorry to hear yours did not close. I am still waiting to see if mine does after one year. Can you tell me what device you have in place and wher you had it done? Did the amount of shunting/hole size decrease at least? How old are you, are you having it done via cardiac cath or open heart? My best to you. 

     RF1

Posted 5/9/2009 3:36 AM (GMT 0)
Wow, I'm amazed and sorry to hear so many that haven't closed. I had my closure done on April 28, 2008. At my 1 year echo/bubble study there was still a leakage so I went in for a TEE last Wednesday. The TEE showed that my device was in place but there was some leakage around the outside edge. My Cardio surgeon has decided that it's not large enough to do a second device. As long as the leak doesn't get any larger I should be okay and he will do nothing. I will have to have follow up TEEs to make sure it doesn't change but for now I'm off the Plavix and just on the aspirin. Actually I don't know if this is worse than just having the second device done. The way it is now I'll be worrying all the time about having another stroke. 
Posted 5/9/2009 1:56 PM (GMT 0)
CATMOM - I think that you have to look at it that you are in a better place now than before. The fact is that your hole is reduced therefore reducing stroke risk. Do you know what contributed to your previous stroke? i.e. birth control, travel, blood coagulation disorder, etc... if you do, then this should also ease your mind a little too. What was your doctors reasoning for taking you off plavix? Did you have side effects? Do you suffer from migranes and if so has it reduced them? My best of luck to you. I know that it sucks having gone through so much and to have the surgery and have it not be 100% successful. I am amazed too, how many people have experienced what you and I have been through. I wonder what devices were used, and that matters in the success? I had an Amplatzer device.
Posted 5/10/2009 3:09 AM (GMT 0)
rf1, I have the gore-helex device. We have no idea as to what contributed to my stroke. I wasn't on birth control, hadn't been traveling and had no other health issues what so ever. It just totally came out of the blue one day. I was on Plavix and 325mg aspirin and was having a bruising issue. Any time I hit myself the least little bit I would swell up immediately in a huge knot that would take weeks to go down. I looked like my husband beat me I was so covered in bruises and any time I blew my nose I could almost guarantee a bloody nose. So I am happy I'm off the Plavix but it does give me pause. My Cardio thinks I will be ok on just the 325 aspirin. I had migraines since I was a small child. At one point in my life I was having 3-4 a week. The good news is I haven't had one migraine since my closure last year. I just wish that I could move on and not have to worry about it any more. Now I have to worry every time I have another TEE that the leak may be larger. Thanks so much for your well wishes.
Posted 5/11/2009 12:53 PM (GMT 0)
CatMom5- Your welcome! My hole leaks too, but my Doctors feel that the leak will not necessarly get bigger, just might not fully close so maybe your won't ? I find my self always trying not to bear down, lift too much, etc... because it opens mine up. Talk about difficult to do! I thought I would mention that I wear a medical bracelet. I decided to get one indicating my medical history in case I ever am alone and unable to communicate. This gives me some ease. At 36, any medical personel would simply overlook me and not give me the proper treatment as what happened when I first had my stroke ( First Hospital diagnosed me w/anxiety when I could not feel my arms, talk or think or for that matter they did not even read a MRI properly!) My best to you.

RF1
Posted 5/19/2009 2:19 PM (GMT 0)
RF1

I'm a male, 36yrs. I have the AMPLATZER in place, it was done via cardiac cath. The Dr. said that the hole that was closed is just leaking, but the leak is large enough that it needs to be closed. Freaks me out enough with one implant...ugh now I will have 2. Another bummer is this will be another summer of riding down the tubes. 2nd year in a row my banshee will sit in the garage =(. Why do I have to find this stuff out right before summer! =P

This is who did mine. http://www.sorensenmd.com/ Turns out this is one of the leading Dr's that fought insurance companies to get them to cover the surgery BEFORE you had a stroke. See, they found mine yrs. ago, but the insurance said that the only way they would cover the cost is if I had a a stroke...***?! So, I did not have it closed. I went back in to see him a few yrs. later and found out that HE actually had a stroke due to his PFO since I had seen him last... I guess this put him into action and he went after the insurance companies getting them to see that the surgery should be considered preventative.
Posted 5/19/2009 4:15 PM (GMT 0)

WA2- what a story! I am glad you have a dotor that pushes to see the importance of prevention of strokes. I am sorry to hear you have to get another device put in place. I wish you the best of luck. I had my Amplatzer put in about this time last year and I know what you mean about the summer will bite! I just am praying that mine will close enough to stop the leak. I am not a candidate for another device, so you know what that means. Oh by the way does that mean you had a stroke? You said they would not cover yours and then you returned several years later? If you did, were you traveling at the time or do they think something contributed to the stroke other than the hole?

RF1 

Posted 5/19/2009 8:36 PM (GMT 0)
RF1

What do you mean you are not a candidate for another? No, I did not have a stroke (thank god). The reason for returning to him was due to the headaches. I did not have them when the pfo was first found (I was suffering from this weird left arm/leg pain and a neurologist suggest an echo). So after researching and finding out pfo's can cause headaches, I returned to see him. I wanted to know what his input was on it and if there was anything non surgical that could be done....this is when I found out that the insurance would now cover the closure.

I sure wish they would have called back all of the patients that had pfo's that were not closed due to the insurance problem. I had suffered with the arm and leg pain for yrs!
Posted 5/19/2009 11:39 PM (GMT 0)
WA2- according to my cardiologist the location of the Amplatzer device and the angle it is at, It is not advised that a second device be put in place. The only other option is to suture it up, which would mean having to go through the chest wall. My doctors will do another echo w/ bubbles x 1 year and not rush to any major decisions if the leakage is minor. I'm glad you did not have any strokes and you were able to get the Amplatzer device. How is your headaches and left side pain now?   RF!

Posted 5/21/2009 2:08 PM (GMT 0)
rf1,

I sincerely hope that your PFO has closed by 1 year. If it means anything, my echo technician did tell me at the 6 mos echo that she has seen quite a few PFOs that were still open at 6 mos but closed by 1 year.

Posted 5/21/2009 8:21 PM (GMT 0)
I want to thank everyone that has posted on this page. I am getting ready to have my PFO closed on the 4th of June and I am a little nervous about the whole this but its my only option if I want to stay in the military and even then I am not 100% sure that I will be able to stay in once it's complete. I have gotten good information from a lot of post that I would have never even thought to ask my doctor so again ---- THANK YOU ALL!!
Posted 5/23/2009 12:27 PM (GMT 0)
Good luck with your procedure PFO Airmen and I sincerely hope you are able to get back to the military. Lots of people having this done recover very quickly and go on to do everything that they had been doing before and even those of us that had some problems afterwards eventually get back to normal lives.
Posted 5/27/2009 11:52 PM (GMT 0)
Well, I'm home. :-) I had the second closure on Tuesday,26th. This time they used a diff device; Helix. All went ok. I guess the Dr. had a little trouble getting it in the incision, but beyond that all went well with the surgery. I did have the incision rupture when they first got me up to walk, but pressure and a new bandage took care of it. They used this cool new bandage that has a bubble in it. They blow it up so it applies constant pressure. Now I have a 24mm and 25mm device in my heart, trips me out to think about it. shocked
Already today I have noticed a change with my headaches(thank god). I had them 24/7 for months, I had to take Tramadol daily to ease them. They are now (well today, anyway) coming and going and not as intense. I know I can expect headaches up to 2 weeks after surgery, but to already have them chilling out is wonderful! The pain in my left shoulder area is still there. I am hoping it goes away in the next few days, as it did last time.

Good luck you guys. Keep us updated on how things go. I will do the same. :-)
Posted 6/12/2009 7:58 PM (GMT 0)
so glad you are doing well after your second device proceedure. keep in touch. hope the headaches resolve!

RF1

Posted 2/16/2010 4:47 PM (GMT 0)
Hello

I've just found out that my PFO closure isn't completely sealed after 6 months. I realise some take upto a year but there were over 20 bubbles going through which falls into the highest category. Hence I'm not hopeful for the next test in 6 months.

I'd love to know how those of you who had similar problems have got on. I'm fascinated to read that some have had a 2nd device fitted - I'm sending you a bravery award!

Hope I get to hear your news.

Posted 2/17/2010 1:20 PM (GMT 0)
Withnail 1969-

It will be two years this June that I had an amplatzer device placed after two strokes. At the time I was 35 years old, on birth control pills and had traveled, which they believed to be a contributing factor along with my PFO! The Amplatzer device up to this point has not closed completley, I remained on plavix x 1 year and then diconcontinued b/c the bubbles were less at the 1 year visit. currently on 81mg of asprin and a cholesterol lowering drug. I am awaiting next bubble test in April, the cardiologist says they can close after one year? I am not a candidate for a second device due to its position? the risks of open heart do not overweigh enough to go for that option!!!

Keep optomistic about yours, take precautions to avoid future problems, and if you can try to wait it out and not make any harssh decisions yet. I have heard time can close these. Tell me alittle bit more about your story leading up to the closure, what happened, how old are you?

                 RF1

Posted 2/17/2010 6:29 PM (GMT 0)
Hi RF1

Thanks for your reply. You are about 14 months ahead of me then, I hate the thought of still waiting 2 years down the line, you must have more patience than me! How have you recovered from your strokes? I'm pretty good. I was 39 and became dizzy and sick over a couple of weeks then had an episode of vision loss then 2 days later taking my boys to school I went numb down one side, was so confused I didn't know how to get home.... I had no contributory factors other than the pfo and it took 6 months before they looked for that!

Do you know how many bubbles you have passing through now? How do you feel about not being able to have another device, that reduces your options somewhat doesn't it?

I was on warfarin for 1+ year before closure then clopidogrel(plavix) and aspirin for 4 months now just aspirin. I want to check i'm ok to be just on aspirin now they know many bubbles are going through.

It just feels disappointing to go through what was an unpleasant procedure, they nearly didn't do it as my heartrate and bp were going mad during the closure. I had 3 entry wounds as they had to keep trying and was as sick as a dog.

Have you learnt to be positive or is it natural?!blush

Posted 3/1/2010 3:05 AM (GMT 0)
I am newly diagnosed with PFO and 2 prior strokes, 1 old and 1 recent.  After all the MRI's, MRA's, CT's, CTA's and on and on, I have decided to NOT have the closure done.  There just seem to be too many risks, still may have a stroke and non-closure after a year or two and then to have to go through that again.

I also did not take the Coumadin or Pravastatin that my doctor recommended==after reading all the horrible side effects and first hand knowledge of friends who had taken them both.

I am on 325mg. Aspirin and my blood pressure medicine.  I  have added Red Yeast Rice on my own.

I may be foolish, I just don't know, but I cannot make myself believe this is a "safe" alternative with all the risks and things that may go wrong and the surgery also be unsuccessful.

It is very worrisome to know I have had 2 strokes and have a hole in my heart.

I pray I have made the right decision and that the Lord will take care of me.

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