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PFO Closure - Open Heart or Transcatherer 3

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Posted 1/3/2009 11:12 PM (GMT 0)
Quick update -

I just finished yoga and I feel wonderful.  The yoga I practice is active with movement coordinated with the breath.  It's the first real type of exercise I have done in the past 6 months.  Of course I took it easy.  I got a little tired, but it felt like "regular" tired, the type of tired you feel after getting back into an exercise routine after being away so long, and not the "shortness of breath"/heart condition type of tired.  I am sure those of you who have gone through this experience can relate and understand. 

I was so nervous before going, but it worked out even better than I expected.  I feel so happy... my life is slowly but surely getting back to normal!

Greenhope

Posted 1/5/2009 8:34 AM (GMT 0)
hi i dont realy know how to use this forum but i stumbled upon it. i'm 18 years old and i had and echocardiagram a bit ago because i'd been having some anxiety chest pains that were scaring the crap out of me. apperantly i have a PFO my doctor said aneurysum of the atruim septum but he also said like, it closed itself. so i imagine what i have is PFO like, i just have a flap? im not too clear on it because we were supposed to go see a heart specialist but my mom screwed up the appointment. but the regular doctor told me not to worry about it. i'm 19 years old 120 lbs. uhm. i get right sided head pain sometimes and now im starting to worry about strokes. i also have alot of anxiety and i can only hope like, that i'm all right. i dont have insurance right now but i could probably still get myself into the doctor my mom can pull some strings. im not sure if i should just quit worrying or start worrying. so if you wanna throw in your two cents...
Posted 1/5/2009 8:35 AM (GMT 0)
sorry 19* years old lol see i don't even know my own age must be the strokes haha (just kidding)
Posted 1/5/2009 9:44 PM (GMT 0)
Thanks Dinby. I like what your Dr Said "Our Heart has had Surgery'

Greenhope- Im glad to hear your SOB is gone after 3 months. I wasn't expecting it to go away right away. But then my Cardio told my husband he got a good seal & it all went to my head- LOL

Im sorry your 2008 was terrible. I dont want to remember any of 08 either.
Heres to a Much better 2009 for Everyone!!

Glad to hear your Yoga went good!

I did a very short easy work out this morning. Did the stair climber at level 1 & Moved my legs extremely slow for 10 minutes (ok that's about all I ever do- but I usually dont move my legs extra slow)
I am hoping that someday soon I can do the stairs at a level 3 & 4 with out Shortness of Breath!

I was very tired the rest of the day- So took it easy.

gofindyoursaint....An Atrail Septal Anuerysm is a Weakened wall- Not a hole like a PFO- so that couldnt have closed.
I think I read somewhere that a PFO can open & close...with a Shunt/blood flow. I could be wrong...But maybe thats what he meant by it closed. Like you said- a Flap. Maybe you can call him or his nurse & ask them to explain exactly what is meant when he said it is closed & not to worry. If it worries you I would try to pull some strings & get the appt with the specialist remade. Having both a PFO & ASA does increase ones risk of stroke a little more (though not alot) then if you just had a PFO.

Dejaboo
Posted 1/6/2009 9:29 AM (GMT 0)
thank you. yeah im not sure what it is, i remember hearing anuerysm of the atrium septum but also that it isn't a hole, that it closed itself. not sure but thanks for anything anyone has to say! just curiuous. i do have anxiety alot, doesnt help anything
Posted 1/6/2009 9:35 AM (GMT 0)
sorry. im not too sure what the difference is!! he didnt say pfo but yeah. just concerned!
Posted 1/8/2009 2:48 PM (GMT 0)
gofindyoursaint, I had both a PFO and an ASA. My cardiologist described the ASA as a "floppy wall" that can balloon out. My PFO or hole is in the floppy wall. They are two different things.
Posted 1/13/2009 12:06 AM (GMT 0)
Hello Everyone! I am so lucky to have found this site. I have read through so many of your postings that now I feel a little more prepared for my recovery (all the things the Drs. won't tell you!!!) I am 43 and had a stroke on Oct 23. Discovered that I have a PFO w/ASA - no other cause. I am taking part in the AGA Respect trail and having closure (patched! - I love that - although "closure" is a good word too!) on 1/23. I am not terrified of the surgery specifically. I am more nervous about the recovery. I didn't have any permanet disability from the stroke - so I question why should I have the closure - and all the side effects? Althought I know I dodged a bullet and want to be around for my kids to grow up. So keep sharing the info. If I have anything relevent to add after my surgery, I'd like to let you know. All in all, it seem like no one here is saying I regret having it done. SO that is comforting.
Thanks! Happy New Year - Karen
Posted 1/13/2009 2:54 PM (GMT 0)
Hi Karen,
Welcome!
Yes, it is nice to hear about the Procedure & its Recovery from people who have really gone through it.
I also had a PFO & ASA (only 2 TIAs- No Stroke)
I too questioned why I should have it. But decided with the ASA also it was probably a good idea.
Had My Closure (yes!- LOL) 2 weeks ago. The Patch & Recovery has gone very good for me.
I already have more energy then I have had for years & years!
I am waiting for my Shortness of Breath to go away...

Tell me about this Trial.
Good luck on the 23rd!
Dejaboo
Posted 1/13/2009 9:36 PM (GMT 0)
Heartburn after closure? I had my Closure 2 weeks ago.

I really never have heartburn (Maybe once every few months)
I have had it the last 3 days in a row. Hours after eating & not when I am laying down.

Is this normal? Will it go away soon?
Thanks,
Dejaboo
Posted 1/18/2009 7:04 PM (GMT 0)
Hi, Dejaboo, I have had mild heartburn for years which I take care of with 2 or 3 Zantac (over the counter acid reducer) so I know mine was definitely not brought on by the procedure.

My heart rate has stabilized.  It is usually is the 60-80s range when I am sitting in the office which is more normal than the 40s and 50s I was experiencing a few weeks back.  So I guess my heart was still adjusting and trying to find its rhythm at that time...

It has been 3 months since my procedure.  I almost can't believe it!  My echocardiogram with bubble study (originally scheduled for Jan. 19th) has been rescheduled for 2 weeks because my doctors are in a conference.  I was initially disappointed and mad but these negative emotions quickly dissipated.  Now I will just peacefully wait until my February 2 appointment.

Earlier this past week I did 10 minutes of light cardio.  A couple of minutes jumping rope, jogging in place and when I started feeling tired I would lower the intensity and danced or walked in place for another minute or two; and so it went for 10 minutes.  I would not let my heart rate go above 149 bpm.  It's great to have all those years of healthy, active living to draw from.  They are helping me to slowly and almost instinctively get back into shape.  I also took a walk along the beach for about 20 minutes yesterday.  This is a far cry from my marathon and running barefoot on the beach days, but I am getting there.  I will get there.  I am grateful to still be alive and to slowly start getting back to all those things I love to do. 

My body is healthier and this gives way to a happier mind and more peaceful soul.  It is amazing how they are all so interconnected and how they feed off of one other.  My life is getting back to normal. 

When I have the results of my echo I will post them.

Greenhope

Posted 1/19/2009 1:50 PM (GMT 0)
Greenhope, I hope everything goes well with your echo and that your PFO is closed!

Posted 1/19/2009 3:01 PM (GMT 0)

Thank you, CatMom5 for your well wishes.  I hope it's closed too, or at least making good progress.  I was supposed to stop Plavix at 3 months.  However, since the doctor has not seen my heart yet, they advised me from his office to continue taking it until they have the results of my echo. 

Greenhope

Posted 1/19/2009 3:15 PM (GMT 0)
Good to hear from you Greenhope.

I want to come walk on the Beach with you!

I wish you a very good Echo in Feb!

I will really be interested to hear if they have you stop plavix.

My Goal is to get off it as soon as possible so I can get ready for my next surgery...Which my Cardio said 6 months at the earliest for that...I had it in my head that it is based on when I get off Plavix...But this past week I was thinking...Maybe he just wants me to wait 6 months- even if I am off Plavix at 3 months....I guess I will be asking him that next week at my 1 month check up.

3 weeks for me today since my Closure.

heartburn is still everyday for the last 10 days.  I did try tums & they work pretty good...But I want to know why I am getting it now when I never have really before. confused

Dejaboo.

Posted 1/21/2009 6:02 PM (GMT 0)

Hi everyone!

I'm a newbie here and am so glad that I found this site! For the past two years I've been having TIA's and migraines. I've had every test under the sun done to figure out the source of the problem and was diagnosed with Fibromyalgia and told I have too much stress. Finally last week I got a real answer through a TEE. I was diagnosed with a PFO and have an appointment with a cardiac surgeon this Friday. Although I'm happy that there seems to be an answer to my problems, I'm also a bit concerned about having the procedure done to correct it! I feel much better about things now that I've read all of the posts here though. Thank you for putting me more at ease and the reassurance! That's more than I can say for all of the medical personnel I've dealt with! I will keep you posted on my upcoming appointment and what my options are. wink

Posted 1/23/2009 1:26 AM (GMT 0)
Welcome DeerMarie- Glad to hear your PFO was finally diagnosed. let us know how your appt goes tomorrow.

I am 3.5 weeks out from my Closure.
I still have heartburn every day- alot -that started about 12 days ago.

In the last few days I have started to have a Racing heart & Maybe skipped beats. Hard to tell whats going on in there...Feels like my Heart is going to Pop out of my Chest sometimes!

I know others have posted about similar things...But I forget exactly what was said...And if they went away...Or what your Cardio said.
Can you please repeat stuff for me??

Thanks,
Dejaboo
Posted 1/23/2009 11:25 AM (GMT 0)

Hi Dejaboo,

Thanks for the welcome! My appt is today and I will add the question about heartburn to my long list of other questions. You mention that you are facing a future surgery but it must wait 6 months. I too am facing a surgery on my foot, which will need to be repaired sooner than 6 months! I was just diagnosed with Avascular Necrosis (bone death) and am unable to bear full weight on that foot. Not to mention that the pain is horrible. I can't imagine having to wait much longer to have it repaired. I have questions on my list in regards to this too. Nothing like getting hit from head to toe with problems! sad   I'll keep you posted.

DeerMarie

Posted 1/23/2009 2:56 PM (GMT 0)
Dejaboo,

I'm so sorry you are having problems! It sounds very similar to what I had. At about 3 weeks post procedure I started having the pounding heart beats followed by skipped beats. It started where it would happen off and on during the day but got to a point where it was non stop. I landed back in the hospital because at first they thought it was A-fib but it turned out to be PACs [premature atrial contractions]. I went on 50mgs of Toprol a day to try and control it. It took a few weeks before the PACs finally stopped under the medication and after about 4 months I was able to come off of the Toprol without a recurrence of PACs. My cardiologist thinks it was just my heart's way of reacting to the device.
Posted 1/24/2009 1:04 PM (GMT 0)
okay thanks catmom for helping and anyone else who said somethin to me
see ya
Posted 1/24/2009 4:50 PM (GMT 0)

Hi Dejaboo,

I also had racing heart beat and occasional skipped beats.  My heart would get specially bad if I leaned forward and stayed like that for too long; apparently this compresses the chest wall and the implant rubs against it so your heart goes wild!  And sometimes I would get the racing heart beat for no obvious reason at all.  I was able to cope with it without the heart medication which I really did not want to take... of course, if they get really bad for you there may not be much choice but to take Toprol.  It's been 3 months for me and I don't get the palpitations anymore.  The way my cardio explained it to me, your heart is adjusting to the implant and this is why we get the racing heart and skipped beats sometimes.   Hope this helps you. 

On a different note, my energy is definitely coming back.  I am able to be more active now without getting tired.  Of course, I am doing this gradually because I do not want to overdo it.

Greenhope

Posted 1/26/2009 3:53 AM (GMT 0)
Hi all,

Can anyone advise if they have had a large residual shunt on follow-up TTE with bubble study at 6 mos out or greater? I had something weird happen where no blood flow crossed on color doppler. Then a few bubbles went through with Valsalva. Then a whole bunch of bubbles went through around 4-5 cardiac cycles. The test was interpreted to mean intrapulmonary shunt in addition to minor residual cardiac shunt. Pulmonary investigations confirm no intrapulmonary shunt exists so I am being told it has to be a cardiac shunt again, which means my device is leaking. It appears to be stable and wasn't leaking at the time of implant. I am migraine free, but concerned about the possibility of having a stroke in the future if the thing isn't really closed. Any thoughts would be appreciated.
Posted 1/26/2009 8:10 PM (GMT 0)

Hi cogal,

There are a couple of us here that still have open PFOs at the 6 month mark. In my particular case I was told by both my echo technician and cardiologist that it is not uncommon and that it can take up to a year for enough scar tissue to form around the device so that it is totally closed. We are at a "wait and see" point right now. I am continuing on the plavix and aspirin regime until my 1 year echo with bubble study which will take place in April. I'm so hoping that they are right and mine will be closed by then. I too have been migraine free since my procedure. What did your cardiologist tell you about your results?

Posted 1/26/2009 8:17 PM (GMT 0)
My study cardiologist says the shunt may resolve with more time. I consulted an independent cardiology/migraine investigator at another center where they do a bunch of PFO closures. She said she hasn't seen many go on to close after 6-8 mos. I am at 7.5mos and have a 25mm device. She has a manuscript for review stating that an estimated 30% of patients undergoing PFO closure have a secondary source of shunt. Her other research shows that patients with residual shunt still have reduction in migraine burden. I have asked her about her knowledge of incidence of neurological events with residual shunt, but haven't heard back yet.
Posted 1/26/2009 9:24 PM (GMT 0)

Hi Everyone,

I'm scheduled to have the PFO closure on Feb 12th. Went today for lab work and DVT ultrasound. Go again this Friday for Abdominal Aortic US and Arterial Doppler. Could have all been done this morning but there was a big mix up! mad My dr didn't give me the measurments of the hole but did say that it was large. He told me that it is possible that I will experience heartburn and palpations post-op but that not all patients do. He told me that I can have surgery on my foot 3 months after the PFO surgery if my follow-up echos are good and I'm doing well. Said that I would be on Plavix for only 3 months too. I failed to ask him how long it takes for tissue to form over the closure and am concerned after reading the last couple of posts! I'm a bit concerned about another stroke myself! He did tell me that there is an 80% chance of my TIA and migraine symptoms going away though. He also said that he thinks my fatigue and lack of energy is due to the TIA's and migraines rather than Fibro, which he doesn't feel I have. I never quite accepted that diagnosis as I never had all of the tender points. I sure hope I'm doing the right thing by having this procedure done! Any advice on other questions I should ask my dr would be greatly appreciated!

Posted 2/10/2009 7:45 PM (GMT 0)

I have wonderful news to report.  I just had my 3 month echocardiogram this morning (it was postponed twice by the doctor's office!).  My PFO is closed.  The doctor basically said I can get back to my regular exercise regimen and that everything seems OK.  I was given the all clear.

I can finally stop worrying about my health and start enjoying life again!  I am so happy.

I wish everyone much luck and wisdom in making their decisions as they go through these difficult times.  I will always be available to answer any questions anyone may have.  This forum helped me so much during one of the most difficult periods of my life.

Greenhope

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