Survey-on PFO & or ASD Closure

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Dejaboo
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Date Joined Nov 2008
Total Posts : 55
   Posted 12/18/2008 3:50 PM (GMT -6)   
For those that had a PFO & or ASD closure I have some questions for you.
 
1.  Was it Succesful?  Did you have a Follow Up Test/Echo that showed it was Closed?  At what Month was that?
 
Was it succesful In terms of how you feel now Physically? 
 
Describe how you feel now-compared to before.
 
2.  How long has it been since your Procedure?
 
3. What Device was used?
 
4. Did you have any Complications?
 
5. How long were you on Meds After or if you are still- how long (such as Plavix or Aspirin)
And what meds?
 
6. What Made you decide to go with the Closure?
 
7. Would you 'do it again'
 
8. Anything else you would like to add.
 
Thanks for all replies.
Dejaboo

Post Edited (Dejaboo) : 12/18/2008 2:41:04 PM (GMT-7)


Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 12/20/2008 8:20 AM (GMT -6)   
Anyone??

CatMom5
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Date Joined Apr 2008
Total Posts : 88
   Posted 12/20/2008 10:55 AM (GMT -6)   
1. Was it Succesful? Did you have a Follow Up Test/Echo that showed it was Closed? At what Month was that?
Not entirely. I had a 6 month follow-up echo w/bubble study the end of October that showed my PFO was still somewhat open.


Was it succesful In terms of how you feel now Physically?
I feel fine physically. I still get some chest pains if I really over do it but normally I am fine.


Describe how you feel now-compared to before.
I really had no symptoms before. One day out of the blue I had a TIA which caused them to find my PFO. I have to say though that I suffered from migrains my whole life and I haven't had one since my procedure. Also I had always been a very cold person with my nose, hands and feet constantly cold. I am not that way any more. Now everything is toasty warm. I don't know if those are considered symptoms or not?

2. How long has it been since your Procedure?
My procedure was done on April 28th.

3. What Device was used?
My device is the Gore-Helex device

4. Did you have any Complications?
Yes, a few. Since my veins are very small they had trouble during the procedure and I vaso vagaled twice. I also had a huge hematoma at the catheter site which took a long time to go away. It was quite painful. about two weeks after the procedure I developed non-stop PACs which ended me back in the hospital. I was initially put on Inderal which did nothing and then eventually switched to 50mgs of Toprol a day which finally stopped the PACs after about two months. I was taken off the Toprol in September and all is good so far.

5. How long were you on Meds After or if you are still- how long (such as Plavix or Aspirin)
I am still on my meds.

And what meds?
I am on Plavix and 325mgs of aspirin a day. I will remain on this until my hole has closed. I will be rechecked at 1 year [in April 2009] to see if the hole has finally closed.

6. What Made you decide to go with the Closure?
It is what my Cardiologist recommended and my husband didn't like the idea of open heart surgery.

7. Would you 'do it again'
I may have to if my hole doesn't close on it's own. If it has not closed by the 1 year mark then the chances are that it will not close and the risk of another stroke goes up 4x. The next step is to do the procedure all over again and place another device on top of the current device at the location that is still open. With my past complications that is not something I would look forward to doing. If I knew then what I know now I would have had the open heart surgery to fix it. Everything would have been totally over by now.

8. Anything else you would like to add.

Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 12/22/2008 8:59 AM (GMT -6)   
Thank you for your Reply Catmom.
Wow, You have been through a lot with this procedure. Im sorry that things have not gone smooth. I hope that at your 1 year check up your PFO is closed!
Dejaboo

rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/7/2009 1:46 PM (GMT -6)   

To catmom5-

I have had a pfo closure 6 mos ago. The 6mos bubble I just had ,revealedthat a hole still there, however it is smaller. my cardiologist is consulting w/ neuro and my surgent but will probably wait till the 1 year bubble to decide what to do. I am feeling the same way as you. Feeling like we went thru alot ( I had complications after closure too) and it did not do what it was ment to do! Would love to chat and I will say a prayer for you as well or anyone experiencing the same. Thanks rf1


rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/7/2009 2:03 PM (GMT -6)   
Dejaboo said...
For those that had a PFO & or ASD closure I have some questions for you.
 
1.  Was it Succesful?  Did you have a Follow Up Test/Echo that showed it was Closed?  At what Month was that? 6 mos showed little closure from the 1 mo, but it is smaller
 
Was it succesful In terms of how you feel now Physically?  I think i feel more energy, but my headaches and hand numbness is improving
 
Describe how you feel now-compared to before.
 
2.  How long has it been since your Procedure? 6 mos
 
3. What Device was used? amplazer
 
4. Did you have any Complications? yes I had a bleed crit went down to 18 and the bleed stopped on its own. also developed fever when i went home and returned to hosp. for eval. they ? a virus?
 
5. How long were you on Meds After or if you are still- how long (such as Plavix or Aspirin)
And what meds? still on a statin, plavix and 81 mg of asprin
 
6. What Made you decide to go with the Closure? i had some ?Tia's and a stroke ( thought to be r/t birth control pills and traveling)
 
7. Would you 'do it again' i may have to, if not closed by 1 year
 
8. Anything else you would like to add. feel depressed to have undergone all this at 35 years of age, and it did not go as planned.
 
Thanks for all replies.
Dejaboo

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 1/8/2009 9:44 AM (GMT -6)   
Im sorry to hear you are going through the same thing rf1. I am trying to remain upbeat that it will be closed by 1 year. The technician that did my 6 mos echo w/bubble study warned me before the test that it's not uncommen for the PFO to still be open at 6 months and that it should be closed by 1 year. I'm so hoping she's right for both of us!

Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 1/8/2009 10:05 AM (GMT -6)   
Thanks rf1.

I hope that both of your PFOs will be closed by 12 months too!

Dejaboo

rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/8/2009 10:21 AM (GMT -6)   
Thanks for the kind thoughts Dejaboo! Catmom5 I am trying to remain upbeat too! I feel a little optamisitic after what you said the u/s tech said it can take a year. not alot of research available for the 1 year visit. Go to website invasivecardiology.com there is an article titled "the trouble with bubbles" it's long but talks about it. I am a nurse so I have a good amt of physicians i can ask their opinions, I am thinking if it remains open but small, I may remain on plavix and asprin forever? My stoke was r/t birth control pills and travel they think. How about yourself?

RF1

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 1/8/2009 10:56 AM (GMT -6)   
My TIA came out of the blue with nothing they could pin it on other than the PFO and ASA. I did some googling on second PFO closure devices and a couple articles came up regarding the second surgery but I agree that there is not a lot of info available. I'm not sure what I will do if it remains open. I'm currently on Plavix and 325mg aspirin and I look like my husband beats me. Any little bump and I have a huge hematoma that takes weeks to go away. I have nose bleeds and I don't even want to get into the monthly issues. My last period was 4 weeks long. I just can't imagine being that way the rest of my life. The Plavix and aspirin combo is not so good for me.

Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 1/8/2009 11:10 AM (GMT -6)   
Hi Catmom5,
I am having the Super bruising issue too. I dont even have to bump myself. If someone touches me I bruise
And the month long issues too. : (
I take it your Dr has no suggestions for that?
Mine really doesnt believe its happening...Well I can tell him it really is!
Hello- have you seen my Hemoglobin?
Dejaboo

rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/8/2009 11:30 AM (GMT -6)   
I am on 75 mg of plavix and 81 mg of asprin daily. Upon my dicharge I noticed there was lots of descrepencies w/ regard to how much asprin to take. I discussed it all w/ the neuro, cardilogist and surgent. The cadiologist and neuro was adament about 81 while on plavix b/c 325 they felt was to much. I do bruise easily and can bleed easily while on 81, but my periods are o.k. and I do not get nose bleeds. I think you should have your PT and PTT checked to make sure your bleeding time is not way off. i hope you guys have discussed this w/ your neuro esp. They will have me back on 325 if i get off plavix. i weight 120 lbs ( I should mention that I have talked w/some who are are on 325, but if your bleeding/bruising alot that may be something to discuss) even alittle less may make the difference. say 200-250 the doctors may be comfortable with?

Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 1/8/2009 1:10 PM (GMT -6)   
I have always had heavy periods. I did have an Endometrial Ablation (where they fry the Uterus) And that sort of helped.
And all was ok until they put me on Plavix last May after a Bilateral Mastectomy-And my Diagnosis of my PFO & ASA. (Cardio wanted me on Plavix & 325 mg aspirin- But he didnt tell me that- Good thing cause I wouldnt have agreed to it) I had Severe Side Effects from Plavix! so took myself off it after 3+ weeks (Cardios Nurse would not let me talk to him) I then went on 325 mg aspirin- On my own. I am now on Plavix (this time around no SE!) And only 81 mg aspirin...But still have the heavy & prolonged periods- I have since June.
My Cardio does not think its a side effect. I do.
I will be pushing to get off the plavix at 3 months. And hopefull the aspirin by 6 months.
( I weight 127)

What is the PT & PTT?
I dont have a Nuero.

Thanks,
Dejaboo

CatMom5
Regular Member


Date Joined Apr 2008
Total Posts : 88
   Posted 1/8/2009 2:30 PM (GMT -6)   
Dejaboo, I'm sorry you are having the bruising and monthly issues. I'm just happy that it's winter here because I can't wear short sleeves without getting looks like I'm an abused woman. I've brought it up to my cardiologist and my regular physician and it has just been brushed off as an affect of the Plavix. rf1, I only saw my neurologist while in the hospital and one visit afterwards. She did not see the need to see me again after that visit and my closure procedure. I do not have another cardiologist appointment until the end of April which is my 1 year mark. If this bleeding doesn't get under control I may just make an appointment with my regular physician and see if he can run those tests you mentioned. Thanks.

rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/8/2009 2:37 PM (GMT -6)   
Dejaboo, Wow it sounds like you have had to go through more than most. My mother had breast cancer & I always have to be alert to the heriditary risks. Bless you for all you have had to deal with.
PT & PTT are lab tests that measure the amt of time it takes to clot your blood. Having this test would determine if you are not clotting enough or too much. Which may help solve your bleeding/bruising concerns. I think most stay on asprin for life after a PFO closure? But do get off of plavix. I see a neurologist b/c of the stroke I had. He has alot of insite to clots, bleeds, and side effects .Did you have a stroke or TiA's prior to the closure?
RF1

Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 1/8/2009 2:46 PM (GMT -6)   
Thanks RF1.
2008 was not a good year.
My Plastic surgeon really messed up my reconstruction. So I will be having that fixed as soon as I am off Plavix for 30 days. I am hoping In August.
I am very mad at my 1st Plastic Surgeon! Grrr.

I will ask about the PT & PTT test.
I had a TIA almost 10 years ago...And then another just this fall. no Strokes. If I wouldnt have brought up my TIA & My Stroke risk with a Drug my Oncologist wanted me to take - My PFO would still be undiagnosed...(But my Oncologist listened to me) ...As My other Drs & Specialists said My Shortness of Breath & Fatigue were from Anxiety- Which I dont have.

My Cardio at 1st said I would eventually be off Aspirin. So I guess that is what I had in my head when I posted.... Then he later said Maybe not. My New Plastic surgeon said he wanted me off everything before he fixed me up...I told him when I last saw him I may be on Aspirin for lief & he said- thats ok.
I suppose it would be ok to be on Aspirin for life..It does have a few other Benefits.
Dejaboo

rf1
Regular Member


Date Joined Jan 2009
Total Posts : 31
   Posted 1/8/2009 3:32 PM (GMT -6)   
Dejaboo- It sounds like if it rains it pours. I am so sorry you have to undergo more plastic surgery. Unfortunately, many people with PFO go undetected and any symptoms, young people have get chucked up to nerves! I had a two strokes at the same time which caused my symptoms to be on both sides of my body. The hospital insisted it was anxiety. Even after I pushed for a MRI, the radiologist missed the two strokes. It was my intuition as a nurse ,and common sense that sent me to Boston where I had the best care thereafter!Like aint easy is it! Are you on anti hormone drugs to prevent breat cancer from returning? Is that what precipitated your TIA? make sure before you go for the plastic recontruction you consult w/ your cardiologist and neurologist if you go to one. after any surgery, you are at risk for clots, so you need to take extra precautions before you have any surgery and get up and move as quickly as possible once the surgery is completed and you feel up to it. Sorry for the length. The nurse in me just feels for you and I want to see that you get the attention you deserve!

Dejaboo
Regular Member


Date Joined Nov 2008
Total Posts : 55
   Posted 1/12/2009 9:24 AM (GMT -6)   
Hi rft,  Yes- it did rain on my Parade a lot last year.
Wow, 2 strokes at the same time on different sides.  That must not happen often.  And you have recovered from your strokes?
Im glad you went to Boston for follow up care!
It is too bad how many people are told its Anxiety or something else when the Drs cant find a cause.
 
I wont  & havent taken Tamoxifen- Although that was the drug in question with regards to my risk of blood clots.  My Surgery should only be about 3 hours & I will go home probably within 2 hours so Should be nice & Abulatory.
 
Thanks for your concern!  It feels good.
Dejaboo

GDawg
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/25/2012 7:14 PM (GMT -6)   
Well Im generally a healthy person, I dont get sick very often. I get colds buts nothing that's really stricken me. I didnt know I even has a ASD until I started having stroke symptoms at the age of 21. My face would go numb, Side of one arm and leg would go numb and eventually my vision would also go blurry. Didnt take action until I head it on the radio and that when we started the hunt. Had a RMI done on my brain because I had a shunt. That was clear. week after I had a scope so they can look at my heart and that's where they found the ASD. They told me I had a 1 hole in my heart and it needed to be closed. Well appointment's followed up to the surgery where this doctor wanted his patience to stay over night. I was omitted in the morning and surgery started at 7 AM and basic surgery's take 45 minutes. After surgery the told me it took longer because THEY FOUND MORE HOLES! one hole is common compared to two holes. I would have had a major stroke before I was 40. My second hole was like swish cheese and they needed to use a different device on that one. They ended up putting two devices in me, a Gore Helex and Amplatzer Occluder.
They had me stay over night through the next morning when they told me I need to get some plavix and I needed to be on aspirin for a year with the followup appointment's as well. The next day was I was discharged to go get my meds My vision went bad again and the first time it happened I had big questions of " um I thought all this was done with" They didnt tell me of any after surgery affects that I will be experiencing besides not lifting for a month. Well we called the Hospital up and they told me that was normal and that I would experiance these " blurry visions" in my eye and they will subside. Well I was not aware of that whatsoever until I did more digging my self. Within a week of taking plavix I had allergic reaction with the medicine, my hands itched really bad, a rare case but it happens. They later put me on Ticklid, a generic brand of plavix and I also was allergic to that as well. So for months I was on 2 big aspirins a day.
I quickly recovered but I was still experiencing my fuzzy visons and over a few times I still called the doctor and once again they said those will subside. well its been 3 years and about I still am experiencing them but only once a moth or so. I thought they would be gone but I guess not. I went back to the doctor, had another scope said I was fine and they actually wanted me one coated aspirin for life. So things have settled down a lot.
So Theres my story, I hope that you take time to read it but its been a trial.
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