PFO Closure - Open Heart or Transcatherer 3

Hi Everyone!

I'm 3 weeks post-op (PFO/ASD Closure) and feeling pretty good. I was scheduled next week for my one month follow-up but had to see my dr early this week because of some concerns. I've experienced a few episodes of chest pain, SOB, a constant ache/soreness over the heart area and several nagging headaches that are not migraines. The echo w/bubble study showed that the hole is completely sealed. I also had a stress test done that was perfect. My dr said that the constant soreness I feel is muscle pain but he can't explain why I have it. He feels the chest pain is esophageal spasms due to the Plavix and wants me to take an antacid to see if that relieves it. I'm also to take Nitro if the antacid doesn't work. It's possible that I will have to be switced from Plavix to something else if I get no relief. He said that he has had patients say their migraines are gone but that they've been replaced by other types of headaches however they seem to subside in a few months...GREAT! Nothing I take seems to relieve them and so my only recourse is to lie down and nap. I've come to the conclusion that they are stress related most of the time. I also feel that I've experienced a couple of anxiety attacks, which contributed to the chest pain and SOB. I never had chest pain before surgery so it kind of threw me for a loop!

I feel much better and am very relieved since having all of my follow-up tests with good results. I'm not as worried about future TIA's although I realize that I could still experience them. I was told there are no guarantees however the surgery should greatly reduce my risk of having them. I pray so! Physically I'm fine but still find that I tire easily. Nothing new! I've been given the OK to travel to Belgium next Saturday with my MIL and am looking forward to having some fun!

Dinby...I'm so sorry to hear of your problems. I hope that you get some answers and they are able to find a solution.

Mollymom...I have BCBS and had no problems with insurance covering my procedure although I had it done because of my history of TIA's. I did have migraines but few and far between. I was told that closure would probably relieve them. I would think that insurance would also cover the surgery if it is being done to help relieve just migraines since they feel that these can be caused from a PFO. I'm not sure what MTHFDNA mutation is? As for the echo w/bubble study...they start an IV, inject saline bubbles into the IV while doing the US of your heart. If bubbles escape the heart...you have a hole. At least this is my understanding of the test. No bubbles escaped my follow-up echo, which means that the hole is now closed. Good luck with your appointment. I don't know how to advise you on finding a good Cardiologist. Just do a lot of research and ask a lot of questions!

Howdy...I really can't say that I had a terrible experience at all with my closure. The worst part of the entire thing was having to lie flat on my aching back for so long! No pain and no problems other than that! I was ready to come home the same night but they wouldn't allow it. I'm glad that I had it done just because I know that it will reduce my risk of future strokes and especially a major stroke. My problems would escalate when I was straining myself too. Of course there is no guarantees but I'm convinced that I have to be better off now that blood clots aren't escaping my heart and going to my brain! I look forward to spring when I can walk my property and work hard in my gardens without the fear that the strain will cause a TIA! Much luck to you!

Mntlivin...Good luck to you also on your upcoming surgery! Have you heard back from your dr yet? For 2 years I suffered with TIA symptoms and was beginning to feel like it was all in my head. At least that's how I was made to feel! Thank goodness for one wonderful dr who finally decided to do the TEE test on me. What a relief it was to find that I actually had a correctable problem that was the culprit of my problems!

Blessings to all of you!!!

Hello everyone and welcome to the new people to this wonderful forum!

Wow!  So many new posts - I hope I am able to keep up and answer most questions:

Dinby - I am so sorry you are having TIAs.  Hopefully, they will figure out why you are having them and they will stop soon.  Are you taking blood thinning medication like Plavix or something else?  Small blood clots can form around the device as heart tissue is growing around it, so I am wondering if these little clots are causing your TIAs as they dislodge and travel to your brain.  Just a thought... 

Mntvilin333 - welcome to our forum!  This is quite the experience, isn't it?  I am so happy you persisted until they found out what was wrong; you sound just like me.  I wouldn't take the "nothing is wrong" for an answer because I could feel my energy failing me and my body rapidly deteriorating.  We are our best advocates!  Hopefully, you the insurance will approve the procedure.  If you get to have the procedure done, you will see a difference in your quality of life.  For me it took about 2 months before I started feeling more energetic and more "normal."  Now it's been 4 months, the hole is closed and I feel better than ever!  Good luck and please keep us posted.

Howdy - Howdy!  And welcome to the forum.  If I were you, with a PFO & ASA, I would not have second thoughts about having the procedure done.  It will decrease your risks of a future stroke dramatically.  It may or may not help your hypoxemia, but it certainly won't make it worse.  Doctors, both neurologists and cardiologists, are still in disagreement as to what the best course of action is when it comes to PFOs.  So, at the end of the day, the tough decision is yours to make and live with.  Whatever you decide, once you have made it, don't look back.  How terrible isn't it, to have to make such a tough decision about your life when you are feeling so sick!  But, that's how life is sometimes.  During that very difficult period in my life, I found this forum and its members to be a great source of support and strength.  People here identified with what I was going through because they had been through it themselves.  It has been 4 months since my procedure and I feel wonderful.  I finally feel back to normal - it takes a while sometimes but it happens (for some people the recovery is a lot quicker).  Not having to worry about my health anymore provided incredible psychological relief.  I hope you will keep us posted.

MollyMom59 - welcome to our wonderful forum!  Insurance companies will DEFINITELY perform the procedure if you've had a stroke or AT LEAST 2 TIAs.  I have heard from past postings on this forum that CIGNA is really bad with coverage of this procedure, but all others should be fine.  You may want to ask your cardio if he can still perform the procedure using the Humanitarian Device Exemption (I had heard this practice had been discontinued with PFO closures, but a cardio or the neuro may be more up to date with more recent developments).  Also, if the neuro doctor is doing a study, he may be able to recommend the procedure as part of his research study.  The echocardiogram (ultrasound of the heart) with bubbles is a regular echo/ultrasound and then the doctor injects saline solution into your heart that create bubbles (hence the name).  If the bubbles travel from one side of your heart to the other, then that means you have a hole in your heart.  The TEE (TransEsophageal Echocardiogram) is where they view your heart by going through your esophagus.  It is a slightly more invasive procedure, but many times they do it once they discover you have a hole to see exactly where it is, the size of it, etc.  The view of the heart through the esophagus is much clearer than with the echocardiogram.  The TEE gives a view from behind but it is clearer because the echo through the front has to travel through your lungs, skin, muscle and bones to get to your heart.  Sorry I can't help you either with finding a good cardiologist.  I found mine through trial and error.  But, if you tell us the general area you are in (Northwest, Southeast, Midwest) someone may recommend a doctor they have seen in that area.  Your blood clottin situation will probably play a factor.  They will probably just give you higher doses of blood thinning medication.  Hang in there!  This is a tough time for you, I know, the waiting and not knowing.  Many of us here have walked down that dark, lonely alley.  But we are here to help you and provide encouragement and support.  We may not be there with you physically, but we will be with you in spirit and thought.  Good luck to you and I hope you will keep us posted.

ScubaDiva - I am so happy to hear your procedure went well and you are on the road to recovery.  I had PACs which lasted for the first 2 or 2 1/2 months.  I can't exactly remember when they stopped, but they have definitely stopped now - I am 4 months post procedure.  So, they do go away eventually, but when they go away varies by individual I think.  I did not take the heart medication for PACs, either, I was able to deal with them without medication.  Hopefully, soon you won't have them and you can get back to diving!  Good luck with your echo - hopefully they will find that the PFO has closed completely!  I hope you will post to let us know your results.

DeerMarie - I am so happy to hear your PFO is completely sealed!!!  What an incredible relief that must be for you - I know it was for me!  Go and enjoy Belgium.  As my neurologist told me earlier this week, go out and celebrate all the wonderful things life has to offer.  We should all be so grateful for our healthier and consequently happier selves.  He added that life is full of surprises, and you never know what tomorrow will bring.  We have been thrown this great curve ball but we survived it with flying colors!  It took me more than 2 months to finally feel my full energy back, so it's normal to still feel tired only 3 weeks post-surgery.  Enjoy Belgium and enjoy life!

I hope I have answered some of your questions and concerns and will be happy to answer many more.  I hope everyone has a wonderful weekend!

Greenhope

 

Dear All,

My 22 yr old daughter has a pfo - not sure of the size but she has had all of the associated classic symptoms for the past 6 yrs (migraines every day, dizziness, vision loss, it goes on and on...). We saw a cardiologist on Monday and were recommended to get a pfo device closure done. We were told there is a 100% success rate and got the impression is basically a "no brainer" to get this done. After reading all the posts on this forum - which I am unbelievably grateful for - we are rethinking this option. Have been doing some non-device research options and came up with the Superstitch and a Radiofrequency Thermal Energy option. The Superstitch has been done in New York, London and Georgia as far as I can tell. Both of these procedures do not leave an implant in the heart and therefore do not have the side effects of the devices. The Superstitch is supposed to literally place a "stitch" to close the pfo.

Does anyone have any information on these 2 methods? Think someone at one time posted that UCSF might be doing the Superstitch.

Also, someone mentioned open heart surgery w/o cracking the rib cage - any more information on that?

Thanks for any help you can provide.............

Not sure where you live, but found out in the past few days that USC does a minimally invasive procedure for closure that does not involve the percutaneous devices or the issues of going through the sternum into the heart, etc. Will be scheduling an appt to get more details but from a phone conversation seems like a reasonable option that is fairly standard there.

Sorry, don't have Cigna, so can't help you there.

Good day everyone, I am 4 days out till my closure!!!!  Feeling good so far.  I was reading over past posts and to Mollymom my Insurance is covering my procedure, however its been quite a road.  I have been waiting since Feb for them to approve my procedure.  

Greenhope-Thank you!!!!  I appreciate the information!  I am happy that you are feeling great, I hope to be on the same road!  If truth be told, I am tired of the road I am on and I am ready for a DETOUR!!!!!!

DeerMarie-Appreciate the wishes. Glad your feeling well and your follow up tests are looking good!  Sounds like alittle, but your still hangin in there- Hope you had safe travels and enjoyed your trip to Belgium!

Have a Grateful Day!

Hi Dejaboo,

No one had to say anything, I could see the bubbles going through. I've had the same ultrasound person all along and she always lets me watch the screen and talks about what is happening. After the 6 month bubble study she was the one that told me that it was quite common for the hole not to be closed yet and that she see lots of people that haven't closed at 6 months. This time she said that while it's not as common she has seen other people that took longer than a year to close and the fact that mine was less than at 6 months was progress and I still had a shot at closing totally. She thinks my cardiologist will decide to wait for 6 more months before doing anything. I am waiting to hear back from my cardiologist on what he wants to do next. I was on coumadin before the closure and am now on Plavix and 325mgs aspirin. If the hole ever closes I will be on a baby aspiring the rest of my life. I was really hoping to get off of the plavix because I too am having a lot of bleeding issues. I hear you on the period hemorraging. I can't blow my nose without starting a nosebleed and holy moly please don't let me hit anything. I immediately get huge hematomas that take weeks to go down. I look like my husband beats me.

Hi Everyone,

CatMom5, I am so sorry to hear that the PFO has not closed after one year.  This must be so frustrating for you!  But, on a positive note, it does seem as if the closure is working, although much more slowly than intended.

Dejaboo, both times I have had the saline injected for the bubble study, at two different large hospitals, the cardiologists have been the ones who had to inject the saline solution, so they were able to tell me right then and there whether any bubbles went through or not.  My first cardio had his office within the hospital complex.  My second cardio also but in addition, he has the technician and the equipment in the office to perform the ultrasound of the heart.  The second cardio even took the time to replay the images so my boyfriend and I could watch and understand - I imagine to give us further psychological relief that no bubbles went through.  Awesome doctor!  He understands that it goes beyond the physical aspects of the condition.

I am feeling great.  I had a slight setback in my exercise routine because I got bronchitis and a sinus infection into the second week of exercising.  Both the cardio and pulmonologist seemed to think that it was NOT heart related which is a good thing.  My coughing went away, but it came back about one month ago.  So Wed. afternoon I see the pulmo doc again so he can see what is going on.  In the meantime, I am using an inhaler.  However, I feel great and almost back to my normal level of energy.  I imagine it won't be 100% back until I can get back into my old exercise regime.  It'll come in due time.  This experience has taught me the great value of patience.  I get the occasional irregular heart beat or skipped beat, but nothing to worry about.

In the meantime, I enjoyed my first official 30 minute walk on "my beach" with my partner - the beach I have been running on for years.  I felt like I had the energy to break into a run and I was dying to do it, but I decided to wait... that day will come soon.  It was a beautiful moment full of meaning for me.  April 24th will be 6 months since my surgery.  I almost can't believe it!

Love and hope always,

Greenhope

 

I cant even make it 5 Minutes Catmom. Literally. I was Up all night running to the bathroom. Sometimes I can make it for 20 minutes. But not any longer then that.This is with all the protection one can use. I pass 6" blood clots. I know TMI :o In Feb. I ended up in the ER after bleeding for 32 straight hrs. But there was nothing they could do That My Cardio & Onco Would agree to.



I had to cancel my Cardio Appt today. Couldnt leave to drive 30 minutes!

I am thrilled that it is closed. Now if Only id feel better.
I can also now schedule my Reconstruction Fix Surgery that my Plastic Surgeon Screwed up. Recovery from that will be terrible. I am not supposed to move my Chest Muscles for 3 months. That will be interesting to say the least.
I will wait on that a few months- Cant do it til July Cardio says anyway...Want to enjoy this summer surgery free. So may wait til Late Aug.

Sorry- Im crabby & Tired this am.
Dejaboo

Well I actually had my closure done last Thursday.  Came back to work this Tuesday and seem to be doing good.  They hurried mine along b/c they found blood clots in arteries going to my lungs and more in my lower leg - probably what caused my extreme shortness of breath and led to the finding of my PFO. 

Pfomom, I'm in a similar situation as you. I have a PFO and looking for a doc to do the closure. I'm going to talk another doc today and my cardiologist next week. They all seem to take the view that percutaneous PFO closure is still somewhat experimental. I don't know why. I'll let you know what I find out.

On Facebook this hospital claims to do the procedure:


www.facebook.com/group.php?sid=738f4caf5da0d6e26fbf638c6521cda7&gid=54556022516&ref=search

Hello everyone

Hope you are having a good day.

I'm waiting for a date for my PFO closure, I had a stroke last year but didn't get the PFO diagnosed until recently. My neuro isn't very positive about the procedure, he also said I shouldn't fly for 3-6 months. I'm meeting a new Cardiologist who does the closures in 2 wks so will check with him. Has anyone else been told that about flying. My neuro said it would be unsafe as it could cause it to move(?) and I'd be coming off Warfarin so more prone to blood clots.

All opinions welcomed!

Regarding the CardioSEAL device, I found this information. The doc is copyrighted, so I can't post it all. It's abstracted at the nih site.

www.ncbi.nlm.nih.gov/pubmed/18830067


A study of three PFO closure devices [Amplatzer PFO
Occluder, CardioSEAL, and Helex septal Occluder
(W.L. Gore and Associates, Flagstaff, Arizona, USA)]
in a randomized trial has provided some early comparative
data with regard to technical and clinical success
[35

]. The CardioSEAL device was more prone to
thrombus formation after 30 days (3.6%) than were the
Amplatzer (0%) and Helex (0%) devices although all
thrombi were asymptomatic. Immediate postprocedure
assessment showed more complete closures and smaller
residual shunts with the Amplatzer device than with the
other two devices. Residual shunting through the PFO at
30 days was more common with the Helex device.