PFO Closure - Open Heart or Transcatherer 3

I feel ok, but for some reason or another my resting heart rate has gone up from 74 to 98. This could be that I am carrying a bit more weight than I would like. Although I'm not to concerned, and have joined a gym to get fitter and loose some weight, I'm wondering if anyone else has had anything like this.

Incidently my blood presure is ok and I'm 5'11 and 16 stone. Target weight should be around 13 stone.

All in all I would recomment the closure, even thought one cardiologist diagnosed a slient heart attack within the 12 week period between closure and second bubble test. Turned out to be my heart complaining about the semi-rigid device implant. 3rd Echo confirmed the heart attack was complete fabrication. Ruined a good holiday in Egypt with all the worry though.

I'm a 47 yr. old otherwise very healthy female who never had any recognizable syptoms such as a TIA prior to this past February.  I could add that I feel like I have, at times, short-term memory loss (I often feel much less articulate than what I used to be) but I've sort of attributed that mostly to aging.  I say mostly, because I can think of a recreational activity that indeed could contribute...

Anyway, early, one February morning, I was going along with my typical routine of brewing coffee and getting on the 'net to check my daily news.... I suddenly noticed that my left hand had gone numb; I remember touching it to my right hand and feeling a strange sensation of someone else's hand doing the touching.  That seemed to quickly subside, but as I sat at my PC and began to talk outlound at said PC for acting up, my words came out sounding like martian language.  Meanwhile, I'm thinking the phrase I'm trying to say... I'm repeating it outloud only to again hear myself sounding out gibberish... I quickly begin typing to see if I'm having other issues... typing's fine... thinking's fine.. speech seems to return though I can't say how long it took... Then... a headache in the front, right side began.  I don't get headaches very often - never migraines - and I think - sheesh, what the heck's going on?  I decide to go to the kitchen and take a couple aspirin - I don't know why - I usually take Advil, but nevertheless.... I take 'em.  Headache subsides fairly quickly... I go back to reading the news and sipping my coffee.

My husband gets up and per usual asks me how I am today - as I explain these odd events he determines immediately that we'll need to call the hospital- I counter with wanting to wait and call my PCP after 9 am.  He claims my speech is slow, hesitant, stuttering....

PCP says to immediately head to the ER.  We do... and gawd, what a nightmare!  Tests... IV's... (trouble finding my usually prominent vein which donates blood often!)...ultrasound on my neck ... a claim that I have arterial disease!  WHAT????  No way I think - I don't eat a lot of fried junk... no history in my family that I know of (I don't have much history to go by, admittedly).  Then the announcement that I must go to a larger hospital (I live in VT) for an MRI.  This is on a Friday of course.... I had big plans that day!  Leave work early - meet up with friends!  Yuk!!!!

Off to the big hospital in a frikkin' ambulance!  They wouldn't let my hubby take me.  Yuk again!  Another ER room... more REALLY sick people among me... I'm feeling too darn good to be here.  And I'm getting hungry!!! No food.. no drink... more coordination tests.... more poking, prodding, bigger IV.  Listening to sicker people haivng to deficate.  Wishing I could just go home and come back for said MRI which isn't scheduled for hours and hours.... FINALLY - MRI - not a big deal for me - then back to ER even though I've been told I have to stay overnight. More waiting.... finally getting to eat... then finally getting sent to a room at 10 pm.  Thinking - oh, good, I can chill, watch a little TV then sleep.  No way... more testing, poking, prodding - promises of getting awakened every 3 hours...

The next morning, a different neurologist who's hard to understand (he's Syrian) and his teaching assistants come in  - he's looking over my MRI - tells me I've had a little TIA.  Oh- and by the way, you had a tiny little stroke some time ago.  No idea when.  The good news?  I do NOT have arterial disease.  Hmmm... I'm sent on my way with a script for aspirin and a statin. I'm told I need an eccocardiagram to figure out why I had a stroke. 

A couple weeks later, I have the ecco.  Am told while still groggy that sure enough, I have a hole in my heart. I'm told on my way out that I'll hear from my PCP soon. 

Then?  NOthing. A couple weeks go by... I'm remaining confident (am I in denial?) that we'll get a call "soon".   Husband calls my PCP - learns the doctor's never gotten anything from the hospital.  Quick scramble...invitation to see PCP, then a call from the hospital to discuss results....

New neurologist accompanies the "student" neurologist that saw me with the 1st neurologist that Friday in February... so now I'm on my 3rd neurologist!  This latest, a real "dynamo" (and the first female!), explains that my care has been mishandled - makes her unhappy - facts are this:  I had an actual stroke in Feb., not a TIA... I have a very large hole...and I have an ASA.  She tells me I should have been kept in the hospital all weekend despite any protestations; that the ecco should have been done the coming Monday; that an ultrasound should have been done on my legs in case a clot was lurking there.  She refers me to a cardiologist who can perform the PFO closure - and notes that this is who she'd send family to.  Then she makes me get an ultrasound before I leave (all clear).

The next chapter.... and most frustrating of all.... I am scheduled for the PFO closure tomorrow, Weds, 5/20.  I get a call yesterday from the surgeon's office- my insurance, CIGNA, has turned down paying for the procedure due to the "experimental nature".  My surgeon has a peer-to-peer w/ CIGNA and is then required to get 2 more doctors to add to my medical facts - the doctor who did the ecco, and the neurologist.  So now I'm in limbo - I'm told that this will likely get approved - that surgery will be delayed a week.  Hubby is furious - calls CIGNA and probably didn't leave a good impression.  <sigh>

So there's my story so far... and in reading so many other posts, I'm basically shocked at how little I still now about post-op and recovery.  We just didn't ask!  I don't know why as I'm typically inquistive.  I think perhaps I am thinking the less I know the easier it'll be?  

Looking forward to hearing others thoughts... thanks for reading this long-winded post!

     I had my TEE done on 5/18 and the doctor told my husband that the hole is larger than what they thought .  The procedure wasn't too bad.  Its the anticipation that nearly kills you.  My closure is scheduled for 6/1/09 and they will measure it then.  I don't mind telling you that I am scared   to death which as I have read many of these postings that it seems most people feel the same way until its over.  All I know is that once it is done hopefully my irregular heartbeats, chest pain, fatigue, shortness of breath, and the risk of anymore TIA's will be gone.

CIANN- Personally if I was expecting my first grandchild I would talk to my cardiologist to see if the procedure could be postponed for a month.  I have 5 grandchildren but there is nothing like the anticipation of the first.  But I would DEFINITELY take my doctor's advice.  It may be in your best interest to get it done right away.  Think of it this way, "I have a broken heart but my doctor is going to fix it up for my grandchild to play with."

LUVADOG-I have been complaining about palpatations with shortness of breath, migraines, tachycardia for 10 years but the doctors always poo-pooed me because my EKG's were always normal.  Last year I had the worst headache ever  .  It was worse than my migraines and lasted 4 days (Fri-Mon).  Every step I took the pain would travel down my spine.  It was horrible and nothing would relieve the pain and I took Foricet for my migraines but it didn't help.  Then on Sunday (3rd day) my husband took me to the ER.   They started an IV, gave me morphine which eased the pain, did a CAT scan and couldn't find anything and sent me home with the DX of Viral Syndrome  .  The next day I stayed home from work (I'm a nurse) because the pain had come back just as bad.  I have 2 dogs and they do have to do their duty so I was able to at least take them out but mind you I live in a Condo Complex on the main drive and I was in my PJ's.  I collapsed on the ground and someone in a car stopped and asked if I needed help and I told him I couldn't get up.  He went knocking on all the doors of my building and my good friend happened to be home.  She came out and asked me what I was trying to do and I told her I "couldn't get my fat a** off the ground!"  She is a therapist and said my speech was slurred and she told me to smile.  I smiled and she says "OH S**T".  I said "What's wrong?" and being the true professional she was she says "OH nothing"  

  The paramedics were called, they came, and were told "I think my friend has had a stroke."  My whole left side wasn't working including my face.  So off to ER we go.  My headache is gone but now my left side doesn't work.  In about 2 hours I regained all function on my left side.  They did an MRI the next day and SHAZAM....there is a white spot in my brain.  The doctors could not give me an answer why I had the "Mini-stroke" because I was in "perfect health"   So they sent me home on baby aspirin and Plavix. 

    So last month I decided I was going to walk, not power walk, just walk a couple miles in the morning and evening to lose a few pounds I had gained.  By the time I would get back to the house I could hardly breath, may heart was pounding out of my chest and I would almost pass out.  So I told my PCP, he referred me for a stress test, the cardiologist asked me a few questions and then ordered the "bubble test" under echo and what do ya know.. ..I have a PFO and how come it wasn't diagnosised before this. DUH!!!!

   I know its easy to say but hard to do but tell your husband to chill out as you have had this condition (pfo,asd) for a while.  Just be thankful that there were no irreversible affects and that it has finally been found and hopefully CIGNA will let you get it fixed. "FEAR OF THE UNKNOWN IS THE SCARIEST FEELING IN THE WHOLE WORLD."

   As far as post-procedure recovery, My doctor already gave me instructions to do nothing but rest the first 3 days after and then very gradually increase activties.  As far as the palpatations and such I am already on Xanax for those and it does help now so I figure it will help after if I have any.  I have read most of the postings by GREENHOPE on this site and she has been most helpful with her experience.  She had her closure this past November.  I just have to put my trust in my doctor and my faith in the Lord.

Besides I have a trip planned to go to Ireland in July .  Keep in touch and let us know how its going.

Hi Ho Everyone,

     The hospital called and they had to postpone my PFO closure for 2 days because I guess the rep. from the company that makes the CARDIOSEAL has to be there for the implant and he couldn't make it on the 1st,  , So I will have the closure on the 3rd.  Just 2 more days to be a bundle of nerves .

     My mother flew in from Phoenix to Detroit to be here with me (she's almost 80 y.o.  ) and we were sitting here talking about it and she couldn't figure out why the PFO wasn't found when I was a kid.....just one of those things where it didn't create any problems then.  But then she started thinking back over the past 10 years when there were little things about me that she noticed, like when we walked (she power walks and I couldn't keep up or would have to rest after a block) or would do something that was stenuous, but not enough to question anything about my health.  She always thought I was out of shape or was being lazy, but those little things that she noticed before are making sense to her now.

Greenhope- Your posts about your experience has helped alot as what to expect in the days after.  My mother read some of your posts and she giggled at some of LUVADOG's little emotional descriptions when telling her story but I also think it eased my mothers fears just a little to know that I am not alone in this.

    If I don't write before Wed. I will write you all after.     Later...........

Hi Everyone!

Thank you all for these postings.  They have been very helpful to me.

IRISH4200:  I spoke to the doctor about possibly postponing for my first grandchild, but his response was that closure asap was imperative for me.  He explained that they grade these on a scale from 0 to 5 and mine is a 5 plus 5!  Basically the worst.  Also, the studies from the bubble tests show me "in the highest stratification for risk of a major stroke".  I spent the last five days with my pregnant daughter in another city.  We did baby preparation things, and then on the last day of my visit I told her about the scheduled procedure.  She was insistant that I NOT postpone, and she said she felt that the baby would not come early.  (due on June 22)  She said she wanted me to be around for a long time for her and the baby:)  I hope that your procedure goes well, and will look forward to seeing your post here as soon as you are feeling up to it!  Good luck!!   My closure is scheduled for June 16th.  I am nervous, but also looking forward to getting it behind me, and moving forward with better health. 

Ciann

Hello Everyone   ,   

      I had my closure the day before yesterday and feel pretty good.  I find myself napping alot, though.  There were a couple minor setbacks before I came home.  I developed a hematoma in the left groin which will dissolve but it is sore.  The right groin is a little bruised.  My blood pressure was low (77/45) and I had a low grade temp but both of those problems was from dehydration.  So they hooked my IV back up and filled me with fluids and was able to come home yesterday.

      The procedure took all of a 1/2 hour.  I remember looking at the clock when the doctor came in the cath room and was 8:45am then they put me to sleep.  My husband said at 9:15am the doctor came out and  told him it was all done.  He said the catheter went right up into the heart without any problem, he took a measurement, 15mm,  inserted the Cardioseal, it opened right up and went right into place and it was done.   He said it was one of the fastest closures he has ever done.  I am full of massive bruises on my arms from blood pressure cuffs and tourniquets.  You figure you are taking Plavix and aspirin already, then they give you 300 mg of plavix just before the procedure and then heparin during the procedure......I guess you are going to break out with bruises somewhere. 

     All and all I feel pretty good.  I do have a palpatation once in awhile but not like I was and the chest pain has subsided alot.  I figure the rest of this stuff will disappear as time goes on.  It was so silly of me to be so worried.....it was so easy!!!!!!!!!!(except for laying on my back for 10 hrs.  with a sand bag because of the hematoma)

LUVADOG: Any word from CIGNA yet??????

CIANN: You go girl!!!!!!!    Let us know how your closure goes and our prayers are with you.

I think you really need to take your clues from your own body. If you feel up to it then do it but don't over strain. Your body and heart will let you know when you've had enough. There were some of us that it took many months before we recovered and then there are others that were back to normal in several days.

As far as follow-up tests go, my first bubble study after the initial post procedure test was at 6 months and I had another one at 1 year.

Thank you for your input.  I truly don't feel my vision is directly related to my pfo, but need to look at it in the way you present....it's still good to have found out I have it, and therefore can be proactive in preventing a stroke.  I just don't know if I need the closure to do that.  Maybe just the aspirin?  But I don't know...some docs say yes...some say no...some say leave well enough alone...my vision is annoying but it's not painful.  It is comforting to know someone understands the complexity of what it feels like and also the frustration of not knowing even how to articulate what things "look" like or "seem" like...sometimes I wonder if I always saw like this, but I now I didn't because it hits me every time I'm on line or looking out the window...like something is "off"...such a strange situation to be in...

Did you do your closure through a study or trial?    Might I ask where you had it done?  I live in Las Vegas....