Pfo problems almost 2 years after surgery!

I had my closure in oct of 2006.I had plenty of tia and 1 stroke.I had a heart mumur too.Than when the closure was done the mumur was not heard.

Now i am getting the headaches back which nothing relieves them.I am having trouble with my sight once again.The doc tells me my heart is racing like mad and my b/p is on the high side.I never had that problem before.I feel worse than ever.My legs and feet swell to twice the size they are.Today he tells me that the mumur is back.I had ekg that was normal.Wed i am getting doppler.Has anyone had these problems so long after they had the surgery? I felt great for so long.Now i am tired all the time.Thanks for the help.

Hello!
Sorry to hear about you.I felt great after the surgery.It's now that I feel 100 years old.I am on plavix and I never had those problems.I to at times get insomnia.They now have me on b/p med and they are running test to find out why my heartbeat is 2 fast.They also hear the heart mummur again.I am lost

Hello John.

People should be aware of the problem's too.They are trying to figure out why mine went wrong.I had my worst stroke 6 month's after I had the surgery.I am looking for answer myself.I am so glad your's went well and I hope everyone work's great 2.

SORRY, I just read my post and misspelled words and everything- SORRY!
My last sentence I MEANT TO SAY- I believe it takes time, longer than what the doctors prepare YOU for. And I have ACCEPTED that.
Again sorry, my MIND IS NOT GOOD!

Hello Everyone.  I am a new member and want to share my husband's experience with his PFO closure.  He had residual migraine headaches left after a bout with West Nile. He suffered for 3 years with a constant migraine. No drugs worked for him to give him any relief. A drug rep told our primary care doc to check for a PFO. Echo was done and found a PFO Right to Left 8 mm hole. Sent us to Denver to a pediatric cardiologist that found my husband to be a candidate for implantation of a closure device.  On Feb.28, 2007, the device was implanted via catheter. The device chosen was a 17 mm CardioSEAL Occluder. While he was still on the operating table, his migraine headache went away. We were so elated!! He had virtually no problems at all during recovery that many of you are describing.  He was 44 years old, thin, athletic build and healthy otherwise.

His color improved, his thinking improved, his dexterity improved. It was a great time in our lives. We started to live again.

On March 10th he had 3 separate "migraines".  These later proved to be TIAs (Mini-strokes).

Then, on March 11, 2008 (one year and 11 days after the implantation) while preparing to go to work at 5 AM, he had a massive stroke.  He had left sided weakness, couldn't stand on his left leg or control his left arm. He is 6'3" and I am 5'4" but I carried him to the car and drove to the ER. EKG showed he was in Atrial Fib and he had a CVA (stroke). The ER kept trying to convert his heart to a normal sinus rhythm but it would not convert. He was hospitalized and the next day had a T.E.E. which showed a 20 mm (almost 3/4") blood clot hanging off of the closure device.  The blood clot was breaking off and sending little blood clots to his brain causing multiple strokes.  THANK GOD that the ER was not able to convert his rhythm as that would have sent the clot to the brain immediately.  The only answer was to open him up and go in and take out the blood clot and the closure device thru open heart surgery.

The problem the surgeon faced was how to open him up without jiggling the clot off and sending it to his brain. They told him that if it breaks off it would be fatal and do not sneeze, cough, stumble, fall, etc. or that would be fatal.

As it happened, the surgery went well. My husband came home on the 4th day from ICU. He was getting along as well as expected. On the 6th day, he did not feel right and may have had another TIA. On the 7th day, he did have another stroke and was admitted back to the NICU. This 2nd series of strokes was worse than the 1st set.

The reason he had a 2nd set of strokes AFTER the surgery is because so much of the cardiac muscle had to be cut out of the heart when the implant device was removed that he bled inside and formed more clots that went to the brain. During the surgery, a new septum had to be fashioned out of pericardium tissue from the outside of the heart and then bovine (cow) material was used to close the outside of the heart.  

Now he has learned to walk again without his leg brace and still has lots of memory issues like how to turn on the microwave, 2X4=?, etc. He does drive again and is starting to work out, but he will NEVER be the same.

He is left with a cough that affects cardiac patients called Dressler's Syndrome and is on his 3rd round of steroids to try to get rid of it. He also has been left with a significant tricuspid regurgitation and a pardoxical septum shift of the left ventricle which means his heart does not squeeze to pump the blood out.  One side goes to push against the other side but instead just pushes it away as the weak side does not come in to meet the opposite side to form a contaction.

Recently, he has begun to have arrhythmias and massive dizziness.

In 20/20 hindsight, if we would have chosen open heart surgery in the first place, he would have been healed up and back to work full time and we would have been planning our next vacation.  The open heart surgery would have been a much better choice and a much easier recovery since we already know that he has recovered from that fairly fast.  His recovery from the 8 strokes he had is far more debilitating than the open heart surgery.  It is just all of these other medical problems regarding a heart that had to be cut open and rebuilt from the inside out because of an implant device that during the surgery was found to not have closed the original PFO in the first place. There was still a hole (granted smaller hole) after the implanted device was placed.  Either the device was defective or the implantation was defective.

Please weigh ALL of your options VERY CAREFULLY before you decide to have your PFO closed with a closure device.  Also a side note, the brand CardioSEAL Occluder (we have been told by our cardiologist) has the highest rate for causing clots.

I am very blessed to still have my husband with me today and pray every day that he will continue to fight the effects of a closure device, 8 strokes and open heart surgery that has ravaged his body.

Thanks for letting me post this long post in the hopes of helping someone who may not know all of the options and making a quick decision without doing all of your research may end up costing you more in the long run and I am not talking about $$.

If the main reason you are planning to have the surgery is to get rid of your migraine headaches, closing the hole most probably will do that. My husband's migraine quit about 10 minutes after the closure device was in place, while he was still on the operating table. By closing the hole, your strokes will probably stop also.  My biggest reason for my previous post was to inform people of the many RISKS to these implant devices. Cardioseal brand has the worst history for clot formation. Some other brands have a tendancy to "walk out" of their placement before tissue has had a chance to form around it to hold it in place. Just do your research before you sign on the dotted line for the implant.  Ask LOTS of questions.  We were just so exstatic to have found an answer to fix the problem that we did not do our due diligence in researching any products or doctors.

I am not sure of the success rates long term for adults is, but I can only tell you of the nightmare we are living.  It has been 6 months since the implant device was removed and all of the strokes have ceased, but yesterday, my husband could not remember how to tie a neck tie.  Two days before that he couldn't tie his own shoes.  In retrospect, like I stated, it is not that we would have signed him up for open heart surgery right away, but if we would have been better informed about closure devices, we may have taken a bit more time to reflect before making our decision.  That's all that I am saying. He was young and healthy except for the migraine.  He would have probably "sailed" thru the open heart surgery and the repair would not have had any of these complications that we are dealing with know.  Clots, Coumadin, Strokes, falls, word-searching, frustration, etc, etc.  We just signed him up for the procedure because it sounded so good and easy to fix the hole, we couldn't get him in the OR fast enough.  We were disappointed that he had to wait for a month before it could be done. 

Anyway, my point is, think about what you are going to do. Don't just have a knee-jerk reaction and get it done.  If you are healthy otherwise, you have the time to do the research to make an informed decision. I am not saying don't have a closure device implanted either.  Maybe just ask your doctor about the reality of open heart surgery???  Just telling you the experience we have had. Good luck, mylife84.

Hi, I have posted on another thread, but i thought I would join this one too. I had closure to an ASD which was 33mm. When I had my MRI and angiogram a year ago it was 3/4 of an inch. When they went to close the hole 4 days ago they found it was one and a 3rd inch! quite a big hole I had amplatzer, and not open heart. For me there wasn't a choice as a hole that size is serious stuff. I am on aspirin and plavix for a month then i stop taking the plavix.
Already the noticeable changes for me are, i don't get breathless climbing the stairs, my heart beat isn't all over the place, i am not wheezing and another thing that was pointed out to me that i hadn't noticed is that my voice is not so deep now! For a female my voice was very husky. It is still husky but has a soft sound to it! Oh and I am not so pale now I have colour in my face!
On the down side I am sore in my heart area and i get a few stinging pains there, I feel very light headed. But to be honest I think the light head is probably due to the oxygen i am getting now. I feel lethargic and I don't feel like I have a lot of energy. But taking into consideration that it is only 4 days since closure I feel a lot better than I thought I would.
I am so pleased I had it done.
I think that if you have been advised to have it done you need to think what could happen if you didn't. I have no doubt that for an ASD the size and the place it was, there wasn't an option. Every one is individual but your consultant will have explained why you need it done and what could happen if you didn't.
There are no garantees that it will be a succsess, but the chances are it will be. Mine may not be a full sucssess I will find out when I have my next scan in 3 months, but if it is not at least I am better than I was. I am happy to ask any questions that any of you may have. I did post a link on one of my previous threads that was a video of some one that had closure, it didn't show the actual procedure but it showed diagrams and 2 surgens answering questions. This helped me no end and got rid of a lot of my fears. I will copy and paste it and put on this thread

Like I said, I am not trying to talk anyone out of the procedure.  Ten minutes after my husband had his hole closed, LIFE WAS GREAT.  NO MORE MIGRAINES!!!!  We could LIVE again!!!!!  EVERYTHING was better.  What I am talking about is the LONG TERM effects of the closure devices.  It was 1 year and 11 days AFTER the surgery that he had a major stroke and kept having strokes until the device and a huge clot were removed with open heart sugery.  Yes, these closure devices are the new and upcoming way to close the hole, and maybe they definitely are the easy way out.  If you have had your device in place for more than 2 years and no problems, then GOD BLESS YOU!!  We thought we were home free and my husband was going to go on and live a happy, healthy long life.  And then 376 days after the implant everything went into the toilet.  He is fighting new challenges every day.  Every day is a new struggle.  It is not the heart problems so much now,although there is still some problems with pumping correctly and palpitations that cause dizzyness.  This is because in order to cut out the closure device actual heart muscle tissue had to be cut out along with the device.  So, now the heart is compromised.  BUT,  it is the 8 strokes he had because a 20 mm (3/4") clot was hanging off of the closure device by a goober and kept throwing little clots to the brain.  He falls on the stairs all of the time, he forgets how to use the microwave, he can't remember how to tie his necktie or his shoes.  His left arm doesn't work most of the time. I can't take him to the grocery store because there is too much input for his brain to process, too many colors, to much commotion.  Mind you, he was a healthy, 44 year old, thin, athletic guy who's job was very complex as a Detective for our Sheriff's Office as the head of the computer crime division catching those perverts.  He also was teaching computer crimes courses at the local community college.  Now he has great difficulty in even working 40 hours and being productive.  This device has been life changing in 2 ways.  Initially, it was a God-send.  Now, he (we) has been thru Hell and is trying to pull himself up and out of it.  The costs of the multiple hospitalizations, numerous physical therapy visits, specialists visits, radiology, and multiple prescriptions has just about bankrupted us.  He is still on Coumadin to prevent any more clotting. But everytime he falls down or up the stairs because his leg doesn't work because of the strokes, it looks as though someone beat him up in the back alley.  I curse the Cardioseal every day when I look at what it has done to my loving husband.  Yes, we taught him to walk again and yes to drive again and he is "working" but this is not the life we were promised by the doctors that set up the procedure for the closure.  NO ONE told us of the clotting problems associated with all of the closure devices.  Please weigh your decision VERY carefully.  IF we had to do it all over again, and knowing what we know now,I know that my husband would have just had open heart surgery to sew up the hole and be done.  He came thru the open heart surgery very well.  NO complications from the surger. We would be planning our next vacation right now and not discussing when the next echocardiogram or doctor appointment is.  I understand that the hole has to be closed, just be careful what method you choose to close it.

Dear Tara,

I am not going to lie to you. I am going to be straight up with you. The recovery time for open heart surgery is longer than having a closure device implanted. I think that is obvious. Everyone is different. Are you healthy other than the PFO? Are you overweight? You already have age on your side. Young folks heal up quicker than old folks, even 44 year olds. For open heart surgery, they do have to open up your rib cage to get to your heart. I am not trying to scare you, but even research on the internet would tell you that. You also will be placed on a heart bypass machine.  They can't sew up a hole with the heart moving like it does.  ANY type of surgery is scary. My husband's recovery time for the implant was about 3 or 4 days.  After open heart surgery, he was up and around after about 2 days in ICU (as a precaution) and he was walking a mile doing laps around the hospital floor from days 3 thru 5. The healing for the sternum that is opened is what takes the longest.  It probably is not solid again for about 6 months.  We were fortunate to have a GREAT, caring, empathetic thoracic surgeon for my husband.  Here in Colorado, open heart surgeries are done all day, every day and our doc had LOTS of experience with the surgery. What complicated the surgery was that darned closure device. It had to be cut out of his heart, which is now causing more complications because of the muscle that had to be cut out that was "attached" to the closure device.  Even the cardiologist here along with the thoracic surgeon had not seen ANY case like what my husband's closure device had caused. 

Once he came home from the surgery, he had to sleep in an upright, slightly reclined position (a recliner works great) for about 2 1/2 weeks or so before he could lie down in our regular bed.  He was given a "chest hugger" which I called his "man bra" that has a wide (6") strap that goes around the back and comes to the front with 2 handles with straps over the arms (like a bra). Hard to describe but instead of cups in front for a bra, there are plastic handles for the patient to grab onto in order to squeeze the rib cage together to support the chest to roll over, sit up, cough, sneeze etc. This is what he wore 24 hours a day every day for about a month. Great invention. I just asked my husband again what his recommondation would be for someone in your position. He said open heart (even as scary as it is), he would choose 1st.

You are correct in saying that initially, things are fine.  But from what I have read, the problems start 6 months to 2 years after the implant is in place in adults. My husband, remember, 1 year and 11 days. I guess kids are different, I am not sure about them.

You may definitely copy out my posts. The cardiologist for my husband is writing an article with the input from his contact person at the FDA about my husband's case because there are not very many studies done on the devices and long term post surgery patients.  After the device was removed, it had to go to pathology and then it was mandatory that it be sent directly to the FDA for inspection.  I am not sure when the article is coming out, but it should be fairly soon now.  I will post on this site when it does get published.

Hold your doctor's feet to the fire and get ALL of your questions answered before you make a decision on Friday.  I will keep you in my thoughts and prayers as I know that this is a very difficult time in your life.  Best of luck to you and your family.  Please post and let us know what you decide.

Laura

I am so BLESSED to have found this site. Thank you so much for everything and writing back to me and kindly explaining and discussiing your husband experience. To be honest he is all I think about and what you guys have gone through. My husband is working in Wyoming until the first week in November and I'm back here in Idaho. My mom and my sister has been going with me to the drs. I have been reading every night to him the posts on here. He absolutley does not want me to get the PFO done. So open heart surgery is whats left. Yes I'm very healthy, just alittle over weight from having two kids. My last one was born 5 months ago. I use to work as a manager at my sister daycare but after quiting there my stress level is way down and I don't get the headaches like I use to. And I have chest pain every now again and get short of breath. But I love working and want to go back to work. Just I won't be going back to the daycare.

I read on another post that they found a new way to do open heart surgery without cracking the rib cage. They go through your side right to the heart. But the lady who posted that can't really find any information on it. So thats another question for the dr.

Again Thank You,

Tara

Tara, the doctor that did my husband's repair surgery is: Dr. Steven Bailey with Cardiovascular & Thoracic Surgical Associates, L.L.C. at 1600 North Grand Avenue, Pueblo, Colorado 81003. Their phone # is 719.545.0663 and fax # 719.545.6994. But I wouldn't think that you would have to come all the way from Idaho to Colorado.  Surely, there have GOT to be some competent surgeons closer to you.  Dr. Bailey is a GREAT doc with lots of experience but like I said, what we liked most is that he really, really cares about his patients. His compassion level is unbelievable.   His office is right across the street from Parkview Medical Center (www.parkviewmc.org), which was convenient for us. I have added you and everyone on this forum to my prayer list, as what everyone here is going thru is so close to my heart (no pun intended) .  I wish you the very best and please keep us informed. Lots of good thoughts and prayers for you and your family coming your way as you make this life changing decision.

Laura

Well just got back from my dr appointment and were doing a TEE on monday to determine the size of the hole. Which is something that the first doctor I saw didnt even say anything about getting it done. He just wanted to go in and do the pfo surgery. And the dr here is boise didn't even understand why he would even attempt to do that without knowing how little or big or if surgery is even nessacery! Well I will inform more on monday nite after my TEE.

Take care,

Tara

Tara, yes good luck.  I hope that this doctor did a good job of explaining the TEE procedure to you. My husband has had 3 and he says it is not bad. I asked him for any advice for you. He said, "Swallow."  That's as hard as it gets.  You have given birth, TWICE!  Piece of cake for you. Will be thinking of you on Monday.  I am so glad that you are taking your time and doing everything you can to be well informed.  Smart girl.  Let us all know.

Laura