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PFO Closure - Open Heart or Transcatherer 3

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Posted 11/15/2008 11:28 PM (GMT 0)
Hi Everyone.  I am starting this new thread on PFO closure since the previous one has gotten too long.

I hope everyone will continue posting on this and other threads.  I have found this website to be an incredible source of information and support!

Greenhope

Link to Part 2: https://www.healingwell.com/community/default.aspx?f=42&m=1065662

Post Edited By Moderator (stkitt) : 11/15/2008 11:23:04 PM (GMT-7)

Posted 11/16/2008 12:01 AM (GMT 0)
...Thanks Greenhope
I believe this is a very good thread full of important info
and obviously it is well read and alot of input has been given
The last thread was 7 pages long..at 25 posts per page

Again thanks for taking initiative to start a part 3 .........LYN
Posted 11/16/2008 12:11 AM (GMT 0)
Anytime... I'm happy to help!

greenhope
Posted 11/16/2008 12:47 AM (GMT 0)
Posted Today 8:38 PM (GMT -5)
Hi Everyone,
i just wanted to know if the PFO closure with catheter is covered by insurance usually.

thanks

POSTED BY kids............

I moved your post to new thread .........thanks LYN
Posted 11/16/2008 1:14 AM (GMT 0)

Hi, kids, and welcome to the forum!

This is what I know from my personal experience.  Hopefully other members will give you their perspectives as well.

I think the humanitarian device exemption (HDE) has been withdrawn for PFO closure with implants because too many people were getting the procedure done than originally anticipated under the exemption.

Here in the US, I believe almost all insurance companies (although I have heard people having trouble with Cigna) will cover the procedure IF:

1)  You have already had a stroke

2)  You have a PFO and an ASA (Atrial Septal Aneurysm) - the ASA is a "floppy wall" as the cardiologist described it to me.  It is the same wall that the PFO is on, the wall (atrial septum) that separates the right and left sides of the heart.  When you have both the PFO and ASA, you are at much greater risk of having a stroke so most insurance companies will cover the procedure.

3)  You have had at least 2 TIAs

4)  You have been on blood thinning medication (usually Coumadin) and it has not worked for you

I would ask the doctor and his office to check on it for you.  From my own personal experience, I think it is better if the doctor's office checks for you because they are able to give the insurance carrier more information that may be more helpful in getting the procedure approved.

Blue Cross/Blue Shield is a very good insurance company so you should not have a problem, but I think a lot depends on your symptoms and medical history.  If you don't mind my asking, what symptoms are you having? 

A word of advice.  If you do not like what your neurologist recommends, you may want to seek a second opinion.  I went to 2 separate, equally brilliant neurologists.  The first one basically brushed me off and gave me a senseless diagnosis of migraine with aura (I don't suffer from migraines!).  The second one said I needed to have the PFO closed as soon as possible and he thought what I had was a TIA or even a possible small stroke (I need to have a more intensive brain MRI to definitely say whether it was one or the other, but now the cardiologist adviced to wait 6 months before I have any MRIs since I already have the implant in my heart).  I think a lot of the discrepancies in thought come from the fact that PFOs are still not completely understood.  One doctor may have the firm belief that the PFO is what led to a stroke/TIA, whereas a second doctor may not be too convinced of this correlation.  Until they have more data from further research and research studies, I think we are going to continue seeing these discrepancies in diagnosis and treatment.

I hope this was somewhat helpful.  Good luck to you on your quest for answers and treatment.  I hope you will keep us posted!

Greenhope

Posted 11/16/2008 1:32 AM (GMT 0)
Kids, I forgot to mention that the neurologist will ask you to see a cardiologist if you haven't already. The cardiologist's office is the one that would contact the insurance company to get approval for the procedure.

Take care,

Greenhope
Posted 11/17/2008 12:40 AM (GMT 0)
Hi Greenhope

thanks for getting back o me.
I do not know what an ASA is but will ask my neurologist if I have one.

Will see him Thursday.
Posted 11/18/2008 1:59 PM (GMT 0)

Hi, everyone.  I hope verybody is doing great!  I thought I'd give you a quick update on my recovery.

Since Friday, I've noticed that my heart rate goes down to the 40s sometimes, usually when I am lying down on my back.  This is  a new development as it was not happening previously.  If I massage my chest or cough, it comes back up.  I also noticed that it will sometimes go back up by itself - it jumps from the 40's to 114 or 130 bpm!  It's as if my heart realizes it's not pumping enough and then overcompensates by pumping too much for a couple of seconds before it comes back to normal.  I started realizing that I felt something in my throat, as if something was stuck there, right before the heart rate starting dropping.  I wear my Polar heart rate monitor that I used to wear when I used to run and that I WILL wear again once I start running again!  wink

Yesterday (Monday) I started sitting up in bed more since I was noticing the low heart rate/high heart rate trend, and I have to say that my heart rate was more stable.  Also, on Sunday night, as I went to sleep, my heart started racing!  I have no idea why.  It was the first time it happened while I tried to sleep since I got the implant 3 weeks ago.  My heart was racing for about 30 minutes - it was in the 160s-170s for about 30 min.  It went up to 229 at one point.  After about 30 minutes, the rate slowed down to the 90s for another 30 min. or so.  I was even more tired by then and decided to just go to sleep.  I woke up feeling fine the next day (yesterday morning).

My energy is definitely coming back.  Friday I walked for about 90 minutes (took a couple of breaks sitting on a bench).  I felt a little tired, but this is because I am still recovering from all the months of physical deterioration and from the procedure, I think.  The last time I walked for 90 minutes was about a month before the procedure.  I purposely rested the day before so I would be ready, and after 90 minutes of walking on and off, I came home exhausted!!  It was such a low point in my life.  I thought to myself how could I get so tired from just walking after I used to run marathons that lasted hours!  On Friday, I felt very optimistic because I could feel the difference in the energy level and "type" of tiredness that I felt.  I'm not sure how to explain it. 

This coming Friday 11/21 will be my first day back at work.  We thought it would be good to work just one day, then have the weekend to recover.  And the following week is Thanksgiving, so I will only be working 3 days; my doctor and I thought this would be a good way to ease back to a normal routine.  I will post over the weekend to let you know how it went.

Greenhope

Posted 11/18/2008 5:31 PM (GMT 0)
Greenhope

I just know I had a stroke 2 months ago. They thought I had a PFO, and then I had to have the TEE test to verify that fact, which it did. Thursday my neurologist will discus what I should do, and I believe my choices are surgery or catheter. Maybe Plavix. I will see what he says.
Which one did you have?

My symptoms are that I have no energy and feel terrible all the time. I try to exercise to give me energy. Wish I could drink something to stop feeling like this. My doctor told me it takes about 1-6 months to feel back to normal. It seems like 2 years and not 2 months. I feel like I lost my whole spirit.

Thanks for listening.
Posted 11/18/2008 6:04 PM (GMT 0)
Hi, kids.  I had the PFO closure via catherer on 10/24/08.  The procedure itself was very uneventful for me.  The interventional cardiologist implanted a 28mm CardioSeal occluder device.  I am healing quite well although I have good and bad days as you see from my posts.  Overall, I feel my energy coming back slowly but surely.

Only time will tell if it was only the PFO that was causing all my symptoms or if there are other underlying conditions.  I personally feel very confident that the PFO was the main culprit.  My cardio said that if the fatigue continues, we would have to explore other possibilities.  I have had countless vials of blood taken by many different doctors, and all preliminary tests come back fine (for everything from iron and anemia to lupus and hypothyroidism).  Of course, if the fatigue persists there are more extensive tests that they could do to find an additional culprit to all my symptoms, but I am quite confident that in my case, all roads lead to the PFO.  But, I need to give the procedure time to work, this is why I took the additional time off from work, to make sure I heal and rest properly.  My main symptoms were extreme fatigue, shortness of breath, lightheadedness, dizziness, a mini/minor stroke, lots of coughing and sinus infections.  I went from being an extremely healthy person to becoming very sick in a period of a few months.  I knew something was definitely wrong with me and I embarked on the difficult quest of finding out what was wrong.  I did not let any doctors try to convince me that nothing was wrong or that it was a simple "migraine with aura."  It's terrible to have to be so persistent and have to keep trying harder when you feel so sick and so tired all the time.  Thank goodness for our survival instincts to help get us through these horrible times!  Thankfully, I have great insurance coverage (United Healthcare) through my job and they covered all my countless testing and even the procedure and hospital stay at 100%!

I am so sorry to hear you had a stroke.  I hope you are recovering well.  The PFO closure via catherer is the less invasive of the 2 procedures.  Hopefully they can perform that one on you.  My cardio's recommendations post-procedure were to take Plavix and a baby aspirin for 3 months and then baby aspirin for the rest of my life.  Hopefully, after the surgery you will slowly but surely start feeling better.  I know I feel much better already.  Plus, the psychological relief of knowing that I am on the road to recovery is priceless! 

I wish you luck in making your decisions.  I hope you will let us know how the visit to the neuro goes.  I am happy to listen and provide any little support I can.

Greenhope

Posted 11/19/2008 8:59 PM (GMT 0)
Greenhope you are a God-send.  The events you have gone through, including the TIA could have been written by me.  I am going in to have my procedure to close the PFO tomorrow at 3 PM.  Although I'm a bit nervous, I am relieved as initially the doctors were talking open heart surgery.  It's a long story, but it parallels yours quite a bit and the decision was made to close up the PFO.  I can't wait to get all this behind me and start recovering.  I had no idea that the chronic sinus infections and very deep, annoying cough (at one point I wondered if I had lung cancer, although I've never smoked) I had for almost 2 years was related to my heart.  Anyway - my question for you is about your eyesight.  I too, realized I had had a stroke, although I initially self diagnosed it as a migrane and just went to bed and slept all night.  The cracked mirror effect, followed by the "blurred visioin" are all what I have been living for 3 weeks.  Incidentally, when I went to the doctor's the day after my TIA, my PCP immediately diagnosed me as potentially having a stroke or heart attack based on my symptoms and the EKG they did on me.  They sent me via ambulance to the emergency room where I sat for 10 hrs., having blood work, EKG's and a Cat Scan only to be told I had a sinus infection that was pushing on my eyes and causing me to not see right.  They put me on antibiotics and sent me on my way.  After a week of some improvement to my eyesight - but not enough I went back to my PCP and he said he had never heard of a sinus infection impairing someone's vision, especially after a whole week on antibiotics.  That started the whole series of tests and 1 week stay in the hospital. Did your eyesight ever return to normal?  The 2 neurologists I saw said mine either would return or my brain would learn to "compensate".  I'd love to hear about your experience with that.   Well, I've made this longer than I wanted, but any input (especially regarding eyesight) would be appreciated.

Posted 11/20/2008 2:51 PM (GMT 0)

Hi Callander_Girl and welcome to the forum!

First I want to wish you luck on your upcoming procedure (today already?).  My eyesight returned to normal the same day.  Within an hour, I no longer had the craked vision, but I had blurry vision on both eyes for a few hours after that.  So, thankfully, mine returned to normal rather quickly and I hope yours will return to normal soon (hopefully it's just temporary).  However, my fatigue got much worse after this incident and I had other neurological impairments (minor but noticeable) that lead me to suspect it may have been a small stroke (but it could also be "temporary" damage caused by a mini stroke/TIA).  I had two brain MRIs done by 2 different neurologists, but they were the most basic "plain brain" MRIs they could do -there are about 10 different types that they can do with varying levels of intensity. One of them showed some minor damage to my right frontal brain matter and the second one showed nothing.  My neuro will have a more intensive one done to have a more conclusive diagnosis, but now I have to wait 6 months because of the implant.  Your doctors may or may not have you wait if you need future MRIs.  I think that because in my case I had too many other symptoms/complications and the device is rather big (28mm or approx. 1.1 in) they are erring on the side of caution.  My cardio also told me NO dental work for 6 months (although I know in general you can have dental work done if you take antibiotics beforehand).  Again, I think it's just my case being a little more extreme so they'd rather be cautious and I completely agree with them on this.

Sinus infections and coughing.  Some of us are "lucky" enough to have interatrial shunting associated with our PFO, so when the blood flows from right to left you increase your chances of stroke because of the blood clots.  When the blood crosses the hole/PFO from left to right, it affects the right side of your heart because it affects its capacity to handle the additional workload that is entering from the PFO at a higher pressure (the left side of your heart pumps at a higher pressure than the right).  Therefore, fluid starts backing up in your lungs and eventually other organs because the right side of your heart cannot handle the additional workload.  This fluid backup in the lungs is what causes all the coughing and the sinus or other upper respiratory infections.  This is how my pulmonologist explained it to me.  He also said the right side of my heart was starting to fail and I had "borderline pulmonary hypertension." It's funny because I also thought for a while that I had some type of lung disease when I had those horrible bouts of coughing.    Eventually, if left untreated, you can develop serious lung complications.

I hope I answered your questions.  Again, I wish all the best on your procedure and I hope you will keep us posted on your recovery.

Greenhope

Posted 11/20/2008 3:23 PM (GMT 0)

Hi to every one................ good to hear from some new people too welcome! Sorry I haven't been on for a while but I wasn't notified of replies.........oh well :-)

 

I had ASD closure 17th September 08. I was feeling really good but I started with bac chest pain at the weekend had to go to A&E good news though it was a viral infection. I am still feeing very tired but the doctor at A&E said that my ASD was very large (33mm) so it could still be due to this, I still get breathless and palpatations but not as bad as before closure. Really hoping that all the hole is sealed but won't know for sure until January when I have my next scan.

 

I am so pleased to hear that those of you that have recently had closure went well and for those of you waiting you are in my thoughts and prayers.

As i have mentioned before for those of you waiting closure I have a page on my web ASD hole in the heart and it is about how the procedure was for me

take care x

www.tonette.co.uk 

Posted 11/21/2008 12:09 AM (GMT 0)
Callander_Girl

Hello and I am so glad you found this forum.  Welcome to HealingWell.

This is a great thread and the members are extrremely knowledge.  They are obviously advocates for themselves.

Please know I am around if you should need anything, my email is open so just send me a note should you have a need.

Gentle Hugs to each of you.

Kitt

 

Posted 11/22/2008 1:18 AM (GMT 0)
Thanks to all for the encouragement. I am home. My procedure took about 2 hrs., I layed flat on my back for 8 hours after I was out of "surgery".  However, but was able to come home at 11:00 this morning (17 hrs. after the procedure was complete.) The hardest part for me was not eating for 35 hours straight. I was not allowed to eat after midnight the night before my procedure and then wasn't allowed to eat again until I was off of the bed rest - as I mention, 8 hours later. The Turkey Sandwich I ate at 2:00 this morning was the best Turkey sandwich I've ever eaten! LOL!

It's such A miracle that they can go in, mess around with your heart and send you home within a day. My PFO was very small (I'll get the dimensions at my follow up.)  I know that's not the case for all. I feel good. My energy is pretty good and I am happy to be home. I'm not supposed to lift over 10 lbs. for 5 days, no soaking in a tub or pool for 5 days due to possible infection at the incission.  However, I can start driving again tomorrow, if I feel up to it.  I'll be on Plavix and 1 low dose aspring for 6 mos., then the cardio will consider taking me off of Plavix and just keeping me on the asprin.  I'll detail out more later for those of you facing this procedure. But I wanted to let you know all went well and I appreciate your encouragement and prayers. Here's to continued recovery and education for everyone. This has been such a learning process for me on so many levels.

Post Edited (Callander_Girl) : 11/21/2008 6:24:41 PM (GMT-7)

Posted 11/22/2008 11:19 AM (GMT 0)
So pleased to hear that you are okay and it went well for you....... now you can get on with life, it's awful isn't it leading up to the procedure. To be honest if I had to have it again I would, it is amazing how simple it is, as you have said some one messing about with your heart :-)  

Take it easy and take care 

Posted 11/22/2008 1:53 PM (GMT 0)
Glad to hear it went Good Callander Girl. Take it easy for the 1st few days...Even if you feel good.
I look forward to hearing updates on you & more info about the Procedure when you are up to it.

I bet that Turkey sandwich was good!
When I had my bilateral Mastectomy this spring. It was about 38 hrs for me with no food. I was Starved! And yes what ever I ate was the Best food I ever had- I kept telling my dh- get me more food- its soo good! LOL
Dejaboo
Posted 11/22/2008 6:09 PM (GMT 0)

Hi, Callender_Girl I'm happy to hear all went well with your procedure!  Just take it easy and rest a lot even if you feel good as Dejaboo says.  I think all the resting I've done has paid off.  I bet that turkey sandwich tasted like a gourmet meal!

Please keep us updated.

Greenhope

Posted 11/23/2008 12:01 AM (GMT 0)
Hi All,

I wanted to give you a quick update.  I finally went to work yesterday for the first time in a month!  It felt good to start getting back to normal, although the days leading up to my return I was a little apprehensive, stressed and excited.  Everything went well; I was there 9 hours (perhaps I should have left a little earlier).  I have to say that I came home and was very tired so I just rested.  I couldn't sleep well last night, but this morning I woke up somewhat energetic and ran some errands.  During the afternoon I have been feeling tired, and right now I feel exhausted and I have that feeling as if I were catching a cold or the flu.  My heart rate fluctuated about 3 or 4 times during the day at work (goes down to low 40's and then back up to 170s or 180s).  It only happened once while I was walking and I felt somewhat dizzy.  I think I am just tired from the combination of going back to work and not sleeping well (let's hope so!) so I'm just taking it easy the rest of the weekend.

Hope everyone is doing wonderfully.

Greenhope

Posted 11/23/2008 10:48 AM (GMT 0)
Greenhope take it easy I think I went back to work too soon, and I ended up in A&E last monday with really bad chest pains.......... turns out I had a viral infection. Does the tiredness feel like a dead weight? that is the only way I could describe my tiredness when it comes.
You are doing the right thing by listening to your body and taking it easy for the rest of the weekend.
Take care
Posted 11/23/2008 7:56 PM (GMT 0)

Hi, Dinby, thanks for responding.  Yes, the tiredness did feel like dead weight.

I forced myself to sleep 12 hours last night (sleeping pills and benadryl).  This morning I feel as good as new, although I am still taking it very easy for the rest of the day.  I have to say that last night I felt pretty discouraged.  But, this morning I feel great and optimistic once again.  It's amazing what a good, long night's sleep can do for your body and your soul!

By the way, what's A&E?  Is that what we call here ER - Emergency Room?  Just curious to know what it means...

Take care and thank you for listening.

Greenhope

Posted 11/24/2008 7:44 PM (GMT 0)
I Finally heard back from my Cardios nurse Called on the 19th in the morning.
My Dr feels confident that he can close my PFO & ASA with the Cathetor procedure!
(I have a small rim- which was found on my TEE test last week)

I need to make a list of questions to ask before my surgery....
Anyone know what I will want to know?

Hope you are feeling good today Greenhope.
Dejaboo
Posted 11/24/2008 8:33 PM (GMT 0)
Anyone have their period during their procedure? ;o
Any suggestions for dealing with that?
Dejaboo
Posted 11/25/2008 12:36 AM (GMT 0)
Hi Dejaboo.  I feel much better today.  I worked a full day again but today felt almost like a "normal" day.  I guess my body and brain just needed to get used to the routine again!  It's a good thing I started working just one day last week and then had the weekend to recover.

Sorry, can't help you with the period issue, mine was done and over with...

Some suggestions for questions to ask:

1)  How big is my PFO?

2) What type of anesthesia: local, general, MAC (I had MAC where you are sedated but not completely asleep)?

3)  Which device do you plan to use?

4)  Post surgery limitations and instructions?

Always be flexible for changes.  Your individual circumstances may cause the doctor to change plans at the last minute.  It helps to be mentally prepared for any last minute changes as well.

Hope this helps.  Good luck with everything and please keep us posted.

Greenhope

Posted 11/25/2008 6:21 PM (GMT 0)
Glad you are starting to get back in the swing of things, Greenhope. It sounds like you are really doing a good job of taking care of yourself and listening to your body.

Dejaboo - I did not have my period during the procedure, but I would imagine that a Tampon could be used. You should probably call your doctor's office and talk to a nurse - worse case scenario, they just reschedule for the following week - but I understand not wanting to wait longer than needed. I had my period when I was in the hospital when they were testing me for the cause of my TIA - which is how they initially found the PFO. I was worried that the blood thinner they put me on would cause an already heavy period to be out of control, but I didn't notice it being any heavier than it normally is. However, like I said, just call your doctor's office and let them know about your concern. It could be a little embarrassing as they do shave your "nether regions". Also, I found that wearing undies for 2 - 3 days after the procedure was not a good idea as the incision point was right wear the elastic around the leg hit and it rubs and could open the wound. Depending on your choice of sanitary protection - not wearing underwear could cause issues too.

Incidentally I went for my follow up visit today and was given a clean bill of health. I have a follow up with the cardiologist on Dec. 29. I will be returning to work on Mon. as there's no point in going back tomorrow only to turn around and be off for the Thanksgiving holiday Thurs. and Fri. I will probably work from home 2 - 3 days next week and venture into the office a few times. It's a 52 mile drive each way for me to get to my office, so I'm not wanting to drive long distances too much right now. My company and boss are very supportive, so I'm fortunate.

Not sure I mentioned this, but the device they used for my PFO closure was an Amplatzer Occluder.
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