Need advice...possible problems with pfo closure device

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rmil
New Member


Date Joined Jun 2010
Total Posts : 16
   Posted 8/7/2010 11:18 AM (GMT -7)   
Hello all!

First off I want to appologize about dominating the cardio forum since yesterday, but I need advice.

It looks as though my device is leaking, there was significant shunting yesterday at my one year appointment that wasn't there 6 months ago.

Has this happened to anyone else? Did you need a new device added? Did they do surgery to remove the faulty device or just add another one?

I will know more Monday when I get the official results, but the radiologist pulled a cardiologist in during my study and then at the end they told me they thought I should know that there is a possibility that the device is leaking or something isn't right, because of the amount of bubble getting through....

Has anyone else had this happen?

Thanks!

Sashaxx
Regular Member


Date Joined May 2010
Total Posts : 58
   Posted 8/7/2010 1:04 PM (GMT -7)   
Hi rmil

Firstly, you don't need to apologize about how much posting you do in the forum as there are some wonderful people in here to talk to, share and get advice from.

I was just going to reply to your other post when I saw this. I am going through something similar. After my device was put in to close the two holes I had, it showed an area where bubbles were still getting through and they thought the device had not quite covered both holes so I was told at my last appt.

I was told my next appt would be around Nov/Dec and they will check again then. Im pleased you may find out more on Monday. My wait is a little longer. Please let us know more when you find out.
xx Sasha xx
 
Fear less hope more, whine less breathe more, talk less say more, hate less love more.....and all good things are yours.

rmil
New Member


Date Joined Jun 2010
Total Posts : 16
   Posted 8/7/2010 2:27 PM (GMT -7)   
Hey Sasha,

Good to hear from you! I'm sorry you have to wait so long! Waiting was almost as bad as the pains and the fatigue! It will be interesting to see what the tell me on Monday.

The radiologist and her boss said they might want to do a TEE.

I will keep you posted. :)

R

Sashaxx
Regular Member


Date Joined May 2010
Total Posts : 58
   Posted 8/7/2010 6:40 PM (GMT -7)   
Hi rmil
 
Yes, I think they may do another TEE on me as well, the only problem is I didn't handle it well last time as they do not sedate you at my hospital for a TEE, which I was surprised at.  It really is awful having one done without any sedation.  I guess some people can handle it better than others ( reading other posts ).
Keep in touch :)

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/9/2010 6:44 AM (GMT -7)   
 
I just read your post and I am scheduled for a TEE tomorrow.............they did not sedate you ?  Yikes,  they will have to sedate me or I will not have the test. smhair
 
I have been told I need to bring a History and Physical with me to the hospital which I am having done today which makes me believe they will be using sedation. 
 
Wish me luck everyone.
 
Kitt

~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Dwanamama
New Member


Date Joined May 2009
Total Posts : 7
   Posted 8/9/2010 11:41 AM (GMT -7)   

rmil,

I also had a great deal of leaking at my one year follow-up.  This past June I had a second device placed and it has made a world of difference for me.  They did not remove the first device (that can only be done with open heart procedure).  Just a little background for you: May 2009 had a 25 mm Gore-Helix device placed.  At my 3 month and 6 month checkups substantial (5+) flow was seen across the device.  Since I am an insulin dependent diabetic, we decided to wait until a year post procedure to do another bubble study.  At one year, I was still at a 5 with significant symptoms.  I opted to have another procedure to determine where the leak occurred and to place a second device.  Once in there, the doc found three areas where blood (and bubbles/clots) were passing through my device.  He was able to use a 10mm vascular plug to close off all three of these areas. 

Best of luck to you and your search for some answers.  I was very upset (as I imagine you are) to find out my device had not completely worked.  Please let me know if you have any questions.  There are not many of us that have had this happen (or at least that's what I've seen).  I am greatful that I followed my gut instinct and went back for the second procedure.

Good luck!

Dawn


rmil
New Member


Date Joined Jun 2010
Total Posts : 16
   Posted 8/9/2010 1:43 PM (GMT -7)   
Dawn,

Thank you so much for sharing your story! It is nice know I am not alone. I am scheduled for a TEE Wednesday morning, so maybe I will have more information afterwards.

Thanks again!

R

Sashaxx
Regular Member


Date Joined May 2010
Total Posts : 58
   Posted 8/9/2010 3:00 PM (GMT -7)   
Hi Kitt
 
Yes, thats right... no sedation.  I wasn't keen when I got to the hospital and they told me I wasn't going to have sedation and that many people can handle it without smhair (.. hmm not sure on that one )  I didn't handle it well and if I was to have another, I would be having sedation for sure.
 
Wish you luck Kitt, let us know how it goes..

Sashaxx
Regular Member


Date Joined May 2010
Total Posts : 58
   Posted 8/9/2010 7:53 PM (GMT -7)   
rmil

Good luck also with your TEE on Wednesday. Please let us know..
xx Sasha xx
 
Fear less hope more, whine less breathe more, talk less say more, hate less love more.....and all good things are yours.

rmil
New Member


Date Joined Jun 2010
Total Posts : 16
   Posted 8/11/2010 5:20 PM (GMT -7)   
Well, now I am really confused, thankful, and frustrated all at the same time.

The TEE went well today. Uneventful, and I don't remember much at all. When it was all said and done they told my husband and father that everything looked great and properly healed. Which is why I am thankful of course.

But I am confused because the same set of radiologists and the same cardiologist were the ones that showed me all of the bubbles passing through last week on my bubble study echo. When asked about that today they told my husband and father that those bubbles could have come from my lungs??? It was my understanding when I started this processes that the bubbles got cleared out when they went to your lungs and if they went straight to the other side it meant an issue. Can that many bubbles really go through the lungs?? And what about the back flow they pointed out to me?

The bubbles went through when I valsalva-ed, could it be that I wasn't awake enought to valsalva properly during the TEE?

I guess I am just frustrated because I know that if the TEE test really does trump the other tests, and my device is healed proprerly....that I may be looking at a lifetime of chest pain and fatigue from having it put in in the first place.

Don't get me wrong, I didn't want there to be a major problem...but an answer to my problems would have been nice. I hope someone can relate to that.

Thanks for reading!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 8/12/2010 7:52 AM (GMT -7)   
 
I am glad your TEE went well however I know exactly how your feel as Mine was normal too so after many tests I have no answers to what has caused my TIA.
 
I actually had 2 TEEs on Wednesday - argh.  The first cardiologist could not get the scope down my esophagus so I was then sent to another hospital who had available anesthesia stand-by.  The second cardiologist had much more experience and the test went well without ansthersia's help.   I had double dose of all meds and throat numbing meds too.  
 
 
After double doses of meds I was perfectly relaxed although I was told I bit the first Doctor ~ no wonder she shipped me elsewhere shocked
 
Blessings to all,
Kitt
~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Sashaxx
Regular Member


Date Joined May 2010
Total Posts : 58
   Posted 8/12/2010 2:05 PM (GMT -7)   
Hi Rmil,
Im also pleased your TEE went well, although yes, there are always questions left unanswered. I understand the frustration and confusion.  My doc said my cardiologist wrote that they could do another TEE but that I did not like having one, well I think that is understandable as I had no sedation.  Back to my doc today to tell him I will have another TEE if I am sedated, thats not until Nov/Dec though so I have to put up with the problems until then I guess..
 
Kitt
shocked  You bit the doc?? lol.  Don't worry, bet they are used to that happening.  I struggled with my doc, was holding his wrist and wouldnt let go lol. Pleased your TEE went well :-)
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