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PFO Closure Part 1 of 2 - CLOSED

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Posted 11/13/2009 2:55 AM (GMT 0)
Hi everyone,

       I got great news today at my 4 week checkup, everything is seated where it should be no fluid around my heart and no inflamation at all.

           I'm getting stronger every day and my mind is getting less foggy.Its so great to have found out what was wrong after so many years of not knowing.

              I had the gore helex septal  occluder implanted in my heart. My pfo was 25mm a little larger than my dr. thought. it took a little over 2 hours to implant, but everything went well. I look forward to a much better life than I have had for the past 10 years. good luck to all of you who are looking to have your pfo's closed I would do it again. winterwhite. wink

Posted 11/17/2009 10:20 PM (GMT 0)

GIJoe,

Much respect for you and what you do for our Country.  I did not have a stroke but suffered from severe daily migraines for the last 10 years.  I wish they had found mine much sooner.  It was a kind of last resort effort to find out whay I was having such severe headaches.  I had a hole that had multiple holes around it like swiss cheese.  My Dr. used the Amplatzer device to repair it.  I jhad it done 9/29/09 and feel great and haven't had any migraines.  I am so thankful to my Drs who listened to me and God for helping me!  I am still tired by the end of most afternoons but I wouldn't trade it for the migraines.  The Plavix seems to affect me more, flu like muscle aches, leg cramps, and soem insomnia, all results of the Plavix.  I only have to have til I'm 6 monthsw out then an aspirin daily.

I was told it was a miracle that I had not had a full blown stroke.  I am so grateful that God had His hand on my life or I could be telling your story.  I just had my photos taken by Amplatzer to use in their headquarters and possible to use on their website.  Go to Amplatzer.com and email them your testimonial.  They love to hear from people that have benefited from the device. 

No more migraines

Posted 11/18/2009 1:04 AM (GMT 0)

Hello everybody,

Has anybody heard of the 'Flatstent EF'; a brand new PFO closure device that has just been passed for use outside the US? This looks very promising as it is so small it actually fits inside the PFO tunnel and therefore has minimal clot/arrythmia risk due less exposure to bloodstream. Testing has looked very positive too. Just wandering how long it will take for UK surgeons to get to grips with it.

Regarding PFO's: what are large holes in terms of size? My echo says that I have a 'small PFO noted'. 

Post Edited (Niceman) : 11/17/2009 6:23:20 PM (GMT-7)

Posted 11/18/2009 10:13 PM (GMT 0)

turn  Hello, I'm new and excited to have others to talk to who know about PFO closures. 

I am a very active 49 yr old female that had a very painful heart attack Dec 07 (they say most women do not have pain with a heart attack).  I had a 99% blockage that required a stent.  Shortly after the heart attack I started blacking out & having vision & memory problems.  My normally low blood pressure started going nuts and my hair started falling out.  My cardologist found my PFO June of 08 & I received the Amplatzer Cribiform in July.  Mine was a large tunnel and needed to be closed.  I had been anemic for the past 3 yrs and we couldn't find a reason for it.  At the time of my surgery it was at 7 and I was so weak I didn't function well.  Four months after the surgery it was down to 3 and I had to get 5 IV bags of iron which got it up to 9 (it should be at least 11 or 12).  I have not blacked out since my PFO was closed and I'm doing much better.  My chest hurts every now and then and I can not lie on my left side with out pain and shortness of breath, but in general it's great to be normal again.  My son and I both almost died during chlid birth 16 yrs ago and the dr's suggested I have no more children and said we had heart problems but nothing was ever found at that time.  They tell me not to worry about my son having a PFO too, but I do.  Do any of you have others in your family that have had a PFO?  And yes, I am still anemic.....

Posted 11/19/2009 1:12 AM (GMT 0)
Here is a link to Flatstent EF:


http://www.coherex.com/products.php


Just FYI

Kitt
Posted 11/23/2009 8:34 PM (GMT 0)
Hello - Newbie to the site

I had my PFO closure on the 19th of November 2009. It is 4 days since the closure and Ithink all is well. I have one hell of a bruise around the groin area and I seem to get heart flutters and it feels as if something is stuck in my chest. These all seem to be common side effects but I was wondering if anyone one else has had a PFO closure lately and what if any side effects they have experienced.

I am adiver and only found the PFO after having 2 skin bends.

Any feedback would help put my mind at rest.

Cheers

JC

Posted 11/24/2009 6:27 AM (GMT 0)
this is interesting my son who is 4 was born with a PDA and a PFO they closed the PDA but left the PFO...he got cleared through cardilogy and was told it was nothing severe that they wouldnt close it unless he had a stroke. well he has 9 brain lesions which appear to be old..they diagnosed him with cerebral palsy because he is weak on his left side..it makes me wonder if it was indeed old strokes.. hmm
Posted 11/24/2009 11:45 PM (GMT 0)
Hello All,


I would like to extend a warm welcome to all of the newbies and I am glad to see you sharing with each other.



If there is anything you need as far as issues with the site please do let me know. My email is the blue envelope to the left, just click on it and you can shoot me an email.



I wish each of you the best and whenever I can I will answer questions for you.



Again a warm welcome,



Kitt
Posted Yesterday 9:06 PM (GMT 0)
 Hello,

 I am very new to this site. I hope some of you can help me, I have been very scared since I have three young children.  I had a friend direct me here to see if any of you might be able to give me insight into my situation.  I had a similar story to GIJOE, I'm 33 and have been told so far that I have had everything from Meniere's disease, Bells Palsy, and then vertiginous migraines which my Neurologist think might be related to a PFO, then changed his mind. I won't get into my symptoms until I see the cardiologist and decide if a PFO is what I actually have. The reason I am needing help is that I had an echocardiogram done where they froth saline up and try to see the bubbles pass through, nothing showed up. Which should be really great but I have questions, within seconds of the injection I became severly light headed. I guess this is not normal. She injected it one more time and I could feel the sensation again, but less intense. The tech had to walk me down the hall and I had to call my husband to come get me, I felt better within an hour. I have been told that the echo is not a very conclusive test for PFO's. Has anyone had the echo done and had similar results/lightheadedness. It just seems to me that if they were testing to see if the air bubbles passed through, even if they didn't see anything the lightheadedness should be a pretty good indicator. The tech even said that the heart can be visually blocked by the esophagus. I had to tell the neurologist to send me on to the cardiologist. Do any of you have some thoughts into my reaction?

Thank you so much

Posted Today 2:34 PM (GMT 0)
@lizbet
I had a stroke in April that affected my left side. While in hospital they gave me the echo with a bubble test, they injected me with salt bubbles three times. The first time I felt the bubbles go through (felt like a tic in my chest). The nurses saw it on the echo as well. They injected the salt bubbles two more times and I neither felt the bubbles go through nor did the nurses see anything on the echo. Of course, I was rather freaked out about the tic feeling, so I think it possible I was holding back on the valsalva maneuver.

I would think a pfo normally shows up on a bubble test echo, yet I know it didn't happen for me two injections out of three. I've since had my pfo and asa closed.
Posted Today 3:46 PM (GMT 0)
@ John Campbell...

I had my pfo/asa closed Nov 10.
I seem to be experiencing some wierd side effects, and have finally put in a call the cardiologist's office asking for some guidance. What is funny is there is no set list of side effects given to patients undergoing pfo closure (as in "what to expect and what to be concerned about"). The only list of things that I had to look out for were the ones related to the catheter sites, and they've closed long ago with no issues.

Due to my stroke in April which affected my left side (though I had recovered about as fully as possible considering the brain damage is permanent), I'm on metoprolol, lipitor (SOP not because I have high chol), coumadin and now, low dose aspirin (just started the aspirin after the pfo closure).

Some things I'm noticing at almost 3 weeks out:

Very Often:
Hands go to sleep when I'm in bed( More than they used to).
Feel cold most of the time.
Less of an appetite

Off and On, very brief instances of:
Achey pain/soreness in heart area.
Ache in back near left shoulder blade/middle.
Chicken bone (something stuck in your chest) feeling happened only a few times, in the first ten days.
Thumping heart beat, usually really noticeable at night or in bed.

In the last five days, a few instances of:
Legs feel shaky/weak.
Chills with/without legs feel shaky/weak.
Total exhaustion

These last few have made me worried, that's why I called my cardio. I had been feeling better, a return to some energy and feeling normal, and it seems to have been sucked away.

Edit: Cardiologist sending me for an urgent echo to make sure all is well.

Post Edited (kcsoup) : 11/30/2009 9:27:11 AM (GMT-7)

Posted 12/8/2009 3:13 PM (GMT 0)
Just an fyi:
I had a standard echo done and all is well. They suggested that I have a chest xray requested by my gp to make sure its nothing else causing the discomfort. I haven't gone in to see him yet.
Posted 12/15/2009 2:24 PM (GMT 0)
I had PFO closure done in December 2005. Just had an echo done and the hole is still there. Had a blood clot in the ankle a couple of weeks ago so they started looking around again. Bubbles went straight over when coughing or bearing down during the test. Going for TEE Thursday morning to see if there's anything coming from the device area -- e.g. clots. From what I've read there is a failure rate especially when an atrial septum aneurysm is present which I have one of those too. Has anyone else had a closure that they discovered was failed years later?
Posted 12/17/2009 8:15 AM (GMT 0)
Hi- I am new to forums all together but just need some information and help. My husband had a PFO closure 7 December, 2009. He has a long history of hemeplegic migraines causing strokes. It has affected our life greatly with the migraines becoming more regular recently. They are so severe that he has seizures and has ended up in intesive care. Our GP recently heard about PFO closure for migraines and he was tested and had a large "of the chart" result. Anyway so we decided to have the PFO Closure. Unfortunately since that day he has had rolling migraines. He seems to get a few hours without headache and then into pins and needles down one side of his body and terrible headaches. The only relief he gets is if we give him anti-convulsants...the only way over the years that we have found to treat them. Has anybody else had migraines AFTER the PFO closure .... and if so for how long. Need some hope that he will get better.
Posted 12/17/2009 12:59 PM (GMT 0)
Welcome to our new members, Glass half full, lthree5 and kcsoup !
I am so happy you have found this great site and I know you will learn a lot from each other so please do share and I know you will be hearing from other members re your concerns.

I have found the support, validation and encouragement that I receive here, to be so helpful and healing. I hope and trust that will be your experience as a member of the HW family.

Do feel comfortable starting a thread of your own. Simply click on the "New Topic" button and the program will open a box for you to post your own topic and concerns in a thread just for you.

Again a warm welcome to all of you.

Holiday Blessings,

Kitt
Posted 12/21/2009 12:34 PM (GMT 0)
An update on my husband...14 days after the operation and still having migraines. Starts with the aura and goes to pins and needles down one side of his body and the extreme headache. He is also very tired and not able to do too much. One of our problems is that we were not told what he should or could not do after the operation ...... not that he can do much cause everything tires him out. He has had 2 days without migraine or aura since the operation...we are just hoping that things settle down. Has anyone else had this kind of reaction since a PFO Closure. Merry Xmas to all. Thanks for having this site ... it is good to read about other people and how successful the PFO Closure was. It gives me hope.
Posted 12/21/2009 5:26 PM (GMT 0)
I've only posted once re: my husband (31 yrs.) who had a stroke in October. We've met with 3 cardiologists and were pretty much told the same thing by all of them -- we don't know what caused your stroke, the PFO is a smoke gun, but no guarantee, since so many people have the PFO and are walking around without having a stroke. They've also told us, we don't have a finite answer to the problem and can't gaurantee a stroke from ever happening again.

Options given were: PFO Closure, Coumadin, Asprin w/Plavix, and a Trial. Coumadin wasn't an answer for my husband since it interacts with 600 different medications and he's on 2 that could conflict and he would basically have to stop anything physical -- sports, snowboarding, etc!

Closure was too scary of a thought right now, since it's 'technically' not FDA approved (yet) and there is no gaurantee (1 cardiologist told us there is literature in the studies that showed paitents had another stroke after the closure, not sure how frequently, plus, I never read anything like that happening, but also don't read medical journals...), so with so many unknowns we decided to to move forward with the asprin/plavix therapy and pray really hard that nothing happens again until more data comes out re the closure.

If anything changes or husband decides to enroll in the trial, I'll post something. Thanks to everyone for sharing their stories, symptons, concerns, etc. This forum really helped! yeah

Posted 12/26/2009 5:14 AM (GMT 0)
I posted my tale of woe regarding Medical officers rejection of PFO closure for me in cardiac section a few days ago.
New to forums and like many of you to being in the sick role I nearly got it right in my attempt to reach out to someone else with my PFO problem fighting a medical bureaucracy - believing I am being discriminated against on the grounds of my 60years of age.

At age 25 I had a cerebral incident following motor vehicle accident hospitalization. Cause was unknown and not investigated as my broken bones took priority and echo cardiogram did not exist.
I had a healthier life from then because I stayed on a healthy diet and kept my weight low and kept active and energetic. I had elective C section delivery. I did not dive. I worked out regularly for decades. I did not take contraceptive estrogen medication because it was a migraine trigger - no migraines before or after the pill but for years the aura which i did not talk about because friends suggested it was a mental health issue. I learned to live with aura and could see through it to drive.

blood pressure crept up at 50 and I began to have all the PFO cardiac symptoms - I could hear my thumping heart at night and could not sleep. My work was affected. I stopped working as a registered nurse because I could not work for the required hours and started a retail job.
Recurrent problems continued for a decade - I was repeatedly told I had mental health disorder - no investigations ordered - even when I lost consciousness briefly and wore bruising for weeks I was still told nothing wrong - perhaps antidepressants would help.

This year it made me ill enough to present to emergency dept. Initial investigations were almost normal and I was fobbed off BUT one Dr listened to me and told me to start fighting because something was wrong and I would die if I did not.
Since then I have had Drs lie to me about investigation results eg - 2 of them on separate occasions told me echo cardiogram was normal when the report said septal aneurysm - tachycardia prevented PFO opening showing. I was refused cardiologist referral because there was nothing wrong with me. I found another Dr and had the referral. I have the confidence to fight which I lacked when my mental health was continually questioned - neurosis, anxiety etc - the reference to madness made me stop questioning the Dr and go away again.

After many more investigations recently I am told PFO is too big for patch and needs open heart repair but I am not eligible for surgical treatment because risk of stroke is too high.
I am Dr shopping and having more investigations to prove that as I do not have arteriosclerosis my risk is no higher than a younger person and that my condition should be treated aggressively.

I believe the treatment I have received is cheap - cost saving medicine offered because my life is not valued by the Drs who have judged me instead of referring me for investigations. I have started collecting evidence and asking for advice to be in writing. I am demanding to be heard and I argue with ignorant medical providers who give me incorrect information.

Beta blockers, aspirin and hypotensive medication have allowed me to exercise and I feel healthy again. Now that the call of night birds and traffic is louder than my heart beat I can sleep again and feel like I have a future.
I can lie in the bath tub and not hear my heart pounding - I love it!!

60 may sound like old age because my mothers family stay fit into serious old age I was planning for years more living and another art exhibition - death from stroke, disablement or dementia is the prognosis now.

I do not believe my story is unique - there is someone past 55 with a better outcome than mine.
Please reassure me if you can.
Unfortunately few middle aged people initiate medical research when their bodies fail and Dr's do not find solutions - most with my problems die quietly of undiagnosed cardiovascular disorders.
Access to information is my lifeline and this forum offers me hope.
Posted 1/1/2010 2:58 AM (GMT 0)

Hi Everyone,

I just wanted to say as we close 2009, how grateful I am for the doctors and the PFO closure that I underwent in August of this year.  I am 43 and feel healthier than I have in 20 years.  I have not had a migraine since the surgery - a very unexpected outcome.  I had migraines almost every time I flew and always when I flew a long distance beside experiencing migraines for various other reasons.   I went to Europe on the longest flight I have taken in October  - no migraine! 

Minor problems like often feeling nauseated and short of breath - all gone following the surgery.  I was very nervous to have the procedure as it was the first and only surgery I had undergone in my life.  The procedure was relatively simple, the recovery was incredibly easy and I felt better immediately.  I flew across the country to have the procedure done by the same doctor as my father.  My father had experienced 3 strokes before being diagnosed with a PFO.  I was checked due to the migraines with aura and the family history at my sister's urging. 

My father had his PFO closed 2.5 years ago following 3 strokes.  He has not had a stroke since.

I had my PFO closed with no strokes and feel better than I ever have in my life.  I had multiple migraines every month, spent the day in a dark bedroom every time and took expensive medicine.  No more migraines.  No more auras.  I breath better. 

I found these boards very helpful as I prepared for this surgery.  What I did realize though afterwards, many of the posts are made during the fear of preparing for the surgery, fear over a complication and fighting through insurance to get the procedure done.  Many of us that had the perfect outcome forget to find the time to post and let each of you know that are struggling through the decision - how very well we are doing - post surgery!

I had a wonderful wonderful doctor - Dr. Ruggio in Southern California and insurance that paid for every procedure.  I am truly grateful for the miracle of health in my life.  I had no idea what impact a PFO was having on my life. I had no idea I could feel so well.

Happy New Year!  And good health to all of you!

Mama Bear

Posted 1/1/2010 8:42 AM (GMT 0)
Mamabear
thankyou for the positive affirmation of the benefits of PFO closure and the excellent outcome for you and your Dad.
Your father must be in the older age group - as I am. His successful closure interests me enormously
I believe I should be considered for a closure BUT have been rejected because the risk of stroke is too high. Knowing that it can be successfully done on people past 55yrs gives me confidence in my fight for a surgical closure of PFO to prevent stroke and to restore my health status.
You traveled across your country to be treated. Maybe I need to look further afield for a better Dr.
Mamabear - you can go into middle age without developing the usual PFO medical complications as your heartmuscle becomes more fibrous and the heart has to compensate for being defective.

Enjoy the moment - good health is a precious gift
Posted 1/3/2010 6:19 AM (GMT 0)

Hi LizBit,

  I had my PFO Closure done 4 1/2 months ago.  I had my first test as the bubble test and some bubbles went through the hole and I had an instant dizzyness and migraine.  They also had me bear down (valvsalva) and more bubbles went through.  Unfortunately, the cardiologist didn't recommend I do anything except take aspirin.  I went to another type of cardiologist (interventional) and when I went for the TEE no bubbles passed through (probably because I didn't bear down??)  Anyway, I had the PFO closed and my migraines are 50% gone (Godsend), and no other TIA problems. 

It is a scary kind of thing to go through, but I have two children and husband that were not having a mother and wife that could function without her head always out of sorts.  I am so much happier now, and have 1-2 migraines a month instead of 5-6 and head hurting all the time.

I think the procedure was the right thing for me, I was hoping all migraines would subside, but 50% is awesome and the chance of having a clot pass through the hole and stroke is an even scarier proposal.

Best wishes,  Renew75

Posted 1/3/2010 10:11 PM (GMT 0)
renew 75
Info regarding your positive outcome and your encouragement to find the right Dr is very supportive. Thankyou. Bad health seems to have engulfed my life - social isolation could so easily occur if a solution is not available. Family and friends are supportive BUT who wants to hear about sickness - it is boring just talking about it.
Forum entries are a lifeline for information and encouragement.
I have to say I do not fear the surgery - I fear the consequences of not having it.
Quality of life is my priority.
My Dr shopping has kicked off for 2010 - being in Brisbane/Australia should not be a disadvantage but I am aware that treatment overseas is sometimes the solution taken when our facilities are inadequate
renew 75 - I do hope that your improvement continues - my migraine aura's stopped when my body stopped producing estrogen - menopause with PFO can cause a pandora's box of medical issues. An early diagnosis and treatment will allow you to plan your future with confidence and the expectation of longevity.
Posted 1/9/2010 9:41 PM (GMT 0)
Help, new to this site, can anyone give me some more info on PFO closure, due to get a letter falling on my door mat very soon to go in, I keep changing my mind, not all questions I feel have been answered, the main one being why mess around with someting that has always been there for nearly 46 years.nono
Posted 1/9/2010 10:54 PM (GMT 0)
sammysnail1964
the answer to your question is simple.
Run with the repair before middle age deterioration sets in and your life is threatened.
When heart muscle and vessels have reduced elasticity they work harder and the PFO may cause mild symptoms which slowly increase until a medical emergency occurs. Blood pressure increase is usually the first symptom that is picked up. You will need to work harder than others to remain fit and active as you age. Heart safe diet and exercise helps enormously BUT if the pump is leaking it is likely to cause trouble.
The fact that your PFO has been diagnosed suggests your health status triggered investigations.
Maybe that leaky pump is giving you warnings.
If you trust your cardiac surgeon, listen to his advice and take preventative action now.
open Heart surgery may be the only option when you are 60 if your cardiac health deteriorates due to inaction now.
Diagnostic equipment used to find and treat PFO is recent technology - Searches for statistics on outcomes from the surgery offer encouragement but few controlled studies have been completed YET to indicate the likely long term outcome for people who had the repair and compare this group with a study group who have unrepaired PFO 10 or 20 years later.
"A patch in time" is likely to save your life and most important your mental health
Embrace the challenges ahead and plan your healthy old age sammysnail1964
Posted 1/10/2010 9:14 PM (GMT 0)
Mamabear,
that is a wonderful update! Thank you!! congratulations to both you and your father and thank you to your sister for following through on your health care needs!! i hope 2010 is your healthiest year yet!!
i a a couple of years younger than you, but have very severe migraines, have had a couple of tia's and have been diagnosed with a medium-to-large sized pfo. my doctors cannot decide whether or not it should be closed. my insurance will not pay for closure - and they are supposedly the best insurance company in illinois and california... they are not true "blue" in my eyes, if you get my drift... just wondering if you have any tips on getting insurance to cover the surgery??
also, i read about side effects from surgery: afib, pain, clots, etc... how was your recovery? also, if you had to pay for the surgery out of your own pocket, would you still have done it? finally, with 50% migraine recovery, do you still get auras? do you take advil and get better? i have no idea what a migraine is that does not leave me blind and completely unfunctioning for days, so i am curious what a partial recovery feel like...
thank you sooo much for your help and congratulations again!!!!
chi town girl
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