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PFO to close or not?

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Posted 3/5/2013 3:54 PM (GMT 0)
Hello,

My name is Brooklynne and I just stumbled onto this forum yesterday while searching for information on my recently discovered pfo.

I mostly am trying to gather information at this point. I've read much about it some good some bad and I'm beside myself with what to expect. I am still waiting for my doctor to respond regarding my results as I just had my bubble test done on Friday.

I fear he will say what technician performing bubble test said my doctor would most likely do and tell me to take asprin daily. I understand why this is done but I feel my symptoms will still linger as thinning my blood won't necessarily make my shortness of breath, dizziness, or lethargy go away.

I have never had any serious issues until now so the thought of a surgical procedure really scares me. On the flip side of that however I've been reading much about cardiologists not seeing the process being a necessary one....it almost seems its not necessary until you have a stroke.

Anyways I am torn here and don't really know what to expect. I don't want to have the closure done if its not needed but I can't live much with these symptoms I have daily.

Any insight, experience or information here is much appreciated.

Thank you tongue

Post Edited (BrooklynneM) : 3/5/2013 9:00:07 AM (GMT-7)

Posted 3/5/2013 6:14 PM (GMT 0)
my wife is age 60 and hers was just diagnosed in the last couple years. at first the doc said it was too small to fool with, but a couple years later and another doc, said it needed to be closed. hers was closed last week in a 45 minute procedure that is done thru the veins, similar to cardiac cath. she spent the night in the hospital and walked out the door the next morning. it was done friday, today tuesday she is back to work. not all of them can be closed thru the veins. some do require open heart surgery. it depends on exactly where it is located on the heart wall.

the doctors have a formula they use to decide if it needs to be closed. listen to the doc and do as he says. when they did my wife they found it larger than originally thought. it was 18mm across, or about the size of a dime. clots are a very real possibility if it is not closed because the blood that goes thru the hole bypasses the lungs which filter out clots and can go straight to the brain. also there is a problem with the other side of the heart enlarging because it is not supposed to have the high pressure that comes thru the hole. once again, listen closely to what the doctor says and ask questions.
Posted 3/8/2013 3:46 PM (GMT 0)
Dear BrooklynneM:
I know where you are coming from. I have had shortness of breath, lethargy, and like (greatunclebill) gout in 1990's - not bothered since, sleep apnea, asthma, high BP & cholesterol - meds are taking care of this problem, Gerd, and muscle weakness. I am so tired of the doctors telling me to lose the weight - larger women are running circles around me, and I am trying to lose the weight. But the symptoms persist.
I just wanted to say, I feel you will get support from this site, but ultimately the decision is ours - with guidance from our doctors. I understand the ? that runs through your head. Which way to turn, what is best for me, is my doctor the best?
Has anyone out there had problems of feet, ankles, legs swelling at high altitudes? To the point that I can not see any ankle - just a fat leg. My niece said it sounded like copd, but all my doctors say no and then I ran across a paragraph which stated:
"Heart valve disease can cause symptoms similar to the symptoms of heart failure such as tiredness, shortness of breath, and swelling in the ankles, feet, legs or belly. Valve disease can lead to heart failure, and both conditions are related because they make the heart work hard and reduce the amount of blood that is pumped to the body." I found this in:
www.hearthealthywomen.org/cardiovascular-disease. I jumped on this because it is the first time anyone has said anything about swelling of extremities. Do you have that problem?
I see something like this and my heart starts pumping and my throat get dry and then I have to say to myself- breath - (we) live in a world that gives us the chance to right the problem with meds and/or surgery.
I'm also of the thought that aspirin is good as it thins the blood but, I also wonder about the strokes. I'm re-reading this and I feel like I am scaring you, which is not my intent - so if you want to rant or yell at me - go ahead - I can take it - I truly hope you find answers and let us know as every little bit helps. My appointment to find out the extent of the hole is 3-12. So maybe we can get together and compare results. Thinking of you and praying for you.
Posted 3/8/2013 4:39 PM (GMT 0)
Moosie- Hello :) u didn't scare me I've heard so many horror stories that was nothing lol. To answer your question I do not have swelling of lower extremities as of yet however I'm headed to the mountains today so I will keep you informed as to what I find with my traveling to another altitude. I have decided I am willing to do what it takes to overcome my symptoms and I can only hope for the best from there. I am a little antsy about my upcoming appointment but its a happy feeling all in all. This heart nonsense is annoying because not only is it expensive to discover your problem it is what seems a wing it sort of deal. I think its insane to wait to do closure until someone has a stroke I'm sort of about prevening a stroke so I guess all will be known as of the 20th. I wish you well in your sickness and will definitely pay attention to swelling tonight. :) good luck to you.
Posted 3/8/2013 4:43 PM (GMT 0)
Thank you greatunclebill for your insight. Every little bit of experience is very appreciated here as it gives me an idea at least to what I'm looking forward to.
Posted 3/11/2013 5:36 PM (GMT 0)
Greatunclebill:
I also give you a big thank you. There is so little here on this forum that is for 60+ women that the information you gave about your wife helps a lot. I hope she is continuing to do well. I have two pages of questions to ask the Drs. tomorrow thanks to this forum.
Posted 3/31/2013 6:44 AM (GMT 0)
Brooklynne:
Have not seen that you have replied lately.
Please let me know that you are OK.
Moosie
Posted 3/31/2013 12:08 PM (GMT 0)
Moosie;
Hello! I am doing fine. I've been busy with a slew of things gone wrong after my PFO diagnosis. I got an abscessed tooth and couldn't open my mouth so was put on antibiotics. The infection drained into my lungs so I had to fight that off. Friday I had my 3 wisdom teeth removed and I am recovering from that. As for my PFO I went to my cardiologist and he doesn't seem to think its a problem (though my symptoms sing a different tune) just two weeks ago I was walking from my room to the living room and I collapsed. Smashing my face into the door frame waking with a big bump and a little blood. Anyways even with that my cardiologist doesn't seem too concerned and thinks everything is benign. Unfortunately I'm still not working and face the symptoms daily. I think I'm going to see another cardiologist because again; I'm having troubles with this and am unable to live a normal for me life. I hope you are doing well and I hope to be all better very soon!
Posted 4/9/2013 9:37 PM (GMT 0)
Brooklyn:
I sent in a reply and must have done something wrong as I don't see it on the site.
What I wanted to say was find out how big the PFO is. Mine did not show in the tests unless I bore down, and then it was only 3 bubbles.
Be careful with abscesses as we had a farmer friend who went into the dentist and said "Pull it." Several days later he was paralyzed. He was flown to Seattle and dx that the infection had settled in his spine. After IV antibiotics and a 5 day hospital stay he is up and out and as ornery as ever.
Just wanted you to know the antibiotics was the way to go.
If it will make you feel better get a second opinion. Especially since you have already passed out and damaged your face. That really must have hurt. We all yearn to live a normal life. So I really hope you get the answers you need soon.
I have been reading about GERD and gases going into the lungs - one reason why I have heavy breathing. So I am trying to eat better and exercise because I also want to lead a better life and feel better. I hope when this is all past we can meet somewhere and kabitz.
Hope this goes through this time. I think of you daily and want you to be better. Moosie
Posted 4/9/2013 10:02 PM (GMT 0)
Thank you Moosie;

I have had some bad luck the last month! I am getting to a point to just laugh it off or I would be one of those crazies we see on the news (what seems nightly as of late).

I drove 2 hours to see a cardiologist because the 'Doctor's' in my town here *insert smug laugh* Well, I would be better off going to a circus tent for medical issues. So I drove, got a hotel, and went in early as requested. After 1 hour of waiting in the waiting room, then an hour inside the patient room, the doctor came to me and said everything I have is benign. Surprise to me, as I am the one noticing such a mess in my life from this "Benign" issue. He rushed out and didn't answer questions, other than he said they wouldn't want to do a closure unless I had a stroke. Oxymoron if you ask me a regular average Jane.

As frustrating as this all is, I am now trying to find another cardiologist, but I am not sure how to make doctors care to return phone calls. This whole thing has been a mess.

On the bright side, my abscess is all better, I got my wisdom teeth pulled and am recovering from that well and am now fighting a nasty bug bite that has my leg in all sorts of dysfunction. Ha ha, as I said, I have to laugh at this point.

I have high hopes that once my leg heals up, I will be back to my old self with just the heart issue. I say just so casually I know, but after everything else that has gone south for me, I am kind of excited to be back to just that. turn

Thank you for your kindness, I hope you heal well. I know the whole change of lifestyle isn't an easy accomplishment, or at least for me, but I am fairly proud of myself with what I have changed as it is indeed better than what I was doing before.

Anyways... Thanks again Moosie. Have a wonderful day; er whats left of it.
Posted 4/10/2013 3:38 AM (GMT 0)
Brooklynne:
I do know how you feel about just sitting down and crying or just laughing it off as life can be so crazy.
You really are a good person, if that had happened to me I would have been screaming for the doctor to sit down and face me like a man. I would have told him that I had questions and I had better get answers or where to go for the answers, and my voice would not have been quiet.
May I ask what hospital this doctor was with? If you do see a third doctor make sure that the person making the appointment knows that you want time to discuss your findings and why you are passing out.
I am so glad that the abscess is healing and that is better, but what kind of bug bite do you have?
Are you passing out any more? You know it might be interesting to call your insurance people (mine is Medicare) and ask how decisions are made regarding PFOs. Why does a person have to have a stroke before surgery can be done? Is it the doctor or the insurance people. Regarding insurance people: my niece was rear ended 2 years ago and the agent (after many letters, phone calls, emails) said that she didn't need to look at her medical records to make a decision regarding insurance payment to them that she knew that she could not possibly be in that much pain. Thus attorneys are now involved.
Again I say that you are a very special person with all that has happened and you still have positive moments. I do hope that you get the answers that you need.
The first of the month I went to my cardiologist at Swedish and she said the hole was small. Well I had read up on procedures, had questions to ask, etc. and it was almost as if she thought I was playing doctor. She said well I'll see you next year, unless something comes up. This was the first time I had found her to have a placating attitude and was very disappointed. The next week I get a letter saying that she was moving on to a different field - one that was more sports medicine and change of life and because of that I needed to know Medicare would not pay for my visits. That if I chose to stay with her I would be added to a pile and she would chose the patients that would go with her. Well, I am changing to a doctor on the Olympic Peninsula and going through the procedure to have all of my records sent to the new doctor.
I realize this has to do with Medicare changes and the Presidents program, but I am tired of senior citizens getting the shaft.
As I have said, "You are a much nicer person than I am." Please take your health problems seriously and get the answers you need. Take with you later - Moosie
Posted 4/12/2013 5:30 PM (GMT 0)
ST. KITT:
Please read Brooklynnm's 3-31-2013:
Where she states she is passing out . Her Dr. states no surgery until she has a stroke.

Do you have any advice for her? Is this the beginning of a stroke series?
Moosie

Moosie;
Hello! I am doing fine. I've been busy with a slew of things gone wrong after my PFO diagnosis. I got an abscessed tooth and couldn't open my mouth so was put on antibiotics. The infection drained into my lungs so I had to fight that off. Friday I had my 3 wisdom teeth removed and I am recovering from that. As for my PFO I went to my cardiologist and he doesn't seem to think its a problem (though my symptoms sing a different tune) just two weeks ago I was walking from my room to the living room and I collapsed. Smashing my face into the door frame waking with a big bump and a little blood. Anyways even with that my cardiologist doesn't seem too concerned and thinks everything is benign. Unfortunately I'm still not working and face the symptoms daily. I think I'm going to see another cardiologist because again; I'm having troubles with this and am unable to live a normal for me life. I hope you are doing well and I hope to be all better very soon!
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