PFO closure and recovery information

Thanks dwelz, That makes me feel good. Without this web site I would have believed that the procedure did not work. Doctors told me that I would feel better the next day. Then it was with in 3 months. With all the info from this site I know it will take one year. THANK YOU for the feed back. please keep posting. Hope you feel great very soon.

Montanajoe

I apologize for the delay in responding, 9 mths post closure and everything seems to feel better heavy breathing after exertion has subsided, migraines still come and go. Just 2 wks ago cardiologist informed me pfo was not sealed completely praying for closure by december 2012.

Hope your 5 mth recovery has improved tremendously wishing you all the best. I recommend you take it easy for 6 mths as everyone's recovery is quite different.

God bless

Hi. I am 27 yrs old and was just diagnosed with a pfo. My primary care doctor gave me the diagnosis after sending me to have a bubble echo done, which is when they discovered the pfo . She says that she thinks I need it fixed for sure but I can't get into the cardiologist for 3 weeks. I have been having horrible migraines and nothing helps. They put me on a preventitive medication but it hasn't done anything. Does anyone have anything that has helped them? I am so terrified of having a stroke or something happening before I get the surgery. How long did it take others between diagnosis and surgery? Now that I know what could happen with my pfo I am afraid of everything happening.... any advice for me?

I am 29 years old (female), 2 kids. I have been experiencing extreme migraines for the past year, before that I had only migraines during preganacy. about 7 years ago (age 22) I started having episodes where I would feel really weak and shaky, like I was going to pass out. I would break out in a cold sweat and my heart would feel like it was pounding out of my chest. I would have to lay down and try to eat something, I would usually feel really tired and weak after. I went to the doctor and he diagnosed me with Anxiety/Panic Attacks. I didn't feel anxious and had a hard time accepting the diagnosis. He put me on Xanex for a month, I had to stay on a low dose and break it into fourths to even function (otherwise it would knock me out.) It seemed to help shorten these attacks, but didn't really stop them all together. He recommended I get on something more permanent for anxiety, but I really didn't feel like I was anxious.

Fast forward to today, I am having migraines and extreme headaches everyday. Today is the first day I don't have an intense headache, but these types of "good days" only usually last half a day. My docor recommended I get a bubble test due to my family history of PFO. My mom was experiencing TIA Strokes and eventually had the closure. My little sister also suffered from chronic auras and migraines, she had the bubble test done and was able to repair her PFO hole very quickly, since then her migraines are gone and she has so much more energy.

My doc ordered the bubble test for me, I had to wait a month to get into into a cardiologist. He said I do have a PFO, but a PFO closure has become a very contriversial topic. That there are not enough studies out there to suggest that a PFO closure actually helps anything. I explained that my mom and sister and cousin have all had very positve expereinces. He told me that they would need to do a TEE to determine whether or not I had an  atrial septal aneurysm (which my mom had.) He said if I did have an ASA, it would help my "case" in possibly getting the closure. He also ordered an MRI to see if I have any signs of stroke. I am getting these test done next week. He said I also need to seek treatment with a Headache Specialist/ neurologist to show that I am attempting to treat my migraines. Lately I have been taking 2 Imitrex a day just to function. Once my tests are complete, he will take my case to a board who will vote on whether  they think that I could benefit to have my PFO closed.

I asked why my sister was able to get her hole closed without having to do further tests, he said her insurance is different and that there is a divide between doctors who think their patients should close the hole if they are having migraines, shortness of breath, etc. and other docs (like him) who do not see any scientific evidence that closure of the PFO is beneficial unless signs of stroke are there.

My mom didn't start having strokes until she was 40, so does this mean I have to live my life with horrible migraines and horrible weak/ Dizzy spells and just wait to have a stroke before they will close the hole? It is sad to say, that I am hoping my MRI shows signs of a stroke so that I can have the closure. This doctor talked to me more about the poltics of the PFO closure, than my health and trying to help me.

Wish me luck on my tests, I sure hope that they find something to build my case. I am a single mother and cannot afford to go to another doc in a different network who will perfom the surgery, so I really need this board to approved my case. :( I guess having a PFO alone isn't enough to have the closure. :(

Hello,
My name is Brooklynne and I am barely 30 years old. I have been tired from the day I was born I swear there hasn't been a day that I wasn't overly lethargic, over the years full of many doctors visits I have been tested for diabetes, thyroid disease, B12, anemia, arthritis and many more things, I probably just cant recall the long list. On February 7th, I was at work when I had my racing heart problems. I have had flutters for as long as I can remember, but I recall really noticing them about 2 years prior to this. This one was bigger than any others I had encountered, I work at a assisted living center here in town and have access to blood pressure cuffs, and heart monitors. We (my boss/friend) and I checked out my heart rate, which clocked in at 156 bpm astonished I was standing they urged me to sit while they took my b/p which was at 129/92. This was when they took me to the Emergency room. They placed monitors on me, took blood, hooked me to IV's had chest ex-rays done and had me stay for about 5 hours where they monitored me. The doctor came in and said I was having an anxiety attack. I knew better. The doctor didn't seem to care much about my symptoms going along with all this, such as pain in my chest, light headed, tingling in my arms and hands, blurred vision and confusion... not to mention the obvious racing heart and not so hot blood pressure reading. Anything I said I had experienced was blamed on anxiety. So even though he thought he shouldn't he went ahead and had me wear a halter monitor for 24 hours, which was miserable... I hate those things. I waited about 3 weeks for my results to come back, as they were lost and ... well that is a whole other story. Finally my results were in, I drove over 200 miles to see a doctor with half a brain and the courage to care, and there he explained I had major activity on my results but not anything he could pin point my issue with. He said at one point my heart rate went way up to 163 and then plummeted down to 50 within seconds. So he ordered more blood work, a bubble test with heart ultrasound, and a sleep study because he is simply smart. Anyways upon study, I have found apnea which I also have suffered from has much to do with heart related disease, so it all made sense. Finally I get my bubble test done and there it is right there on the screen... the hole. The technician was clear that he could tell me what he sees but he cannot diagnose me, so he shows me the hole, which to me is massive but really any hole in such an important organ is bound to look rather large. He explained that the doctor will probably just put me on aspirin for the rest of my life.... okay, that sounds easy enough... however here I am in the same boat as many others, suffering these symptoms daily that interfere with a very large part of my life not to mention my tedious job I once would have killed to have a break from, I find with almost 2 weeks out of work, Id kill to go back. So I understand why aspirin is given, to thin the blood and to lessen the chances of a stroke.... but the aspirin hasn't touched my massive headaches, it doesn't give me energy, I still feel I will pass out if sitting up from the couch, my heart still pounds, races and has those flutters, I still have pain in my chest and I just don't see how I can continue on with this and go to work again. My work sent me away until I get this all cleared up because I can't perform my duties as this thing.... is really getting to me. I find I am petrified and really appreciating life a lot more, I mean I know this isn't way serious, but at the same time it is serious enough. I have taken all measures I could think of, little tid bits of info to stop some of these symptoms, yet after my altering my lifestyle I still find I suffer just as I did before. I am at a loss, and I fear before my doctor gets to see the results he will say that I just need to pop aspirin for the rest of my life or until my randomly written fate... a stroke... gets me. I can't go on with these symptoms, yet am scared to death to go under for anything. I am in a sense happy to see I am so not alone in all of this, and am happy to find others with this, yet I am sad for you too because I know all too well how much we have been through to find this, and still really have no good information or answers. Anyways, sorry about my rant, this is all very new to me, today is monday, and I just found this all out on Friday, so its a little unsettling, and I can't talk to people because it scares them like my family and friends, so I sort of keep to myself about it and hope my brilliant doctor wont let me down now so I can have my life back. I am after all 30 and I have a lot to see and experience yet, I can't when I feel like this though. Good luck to everybody on here, you are all in my thoughts.

Hi everyone! I am 38 and just had a PFO closure two days ago. I have suffered from migraines since I was a teenager. Then in my early twenties I started having stroke like symptoms along with them. At the end of last year my general physician sent me to have a echo with bubble ran and discovered my PFO. I was then sent to a cardiologist who ran a TEE. After having it out with the insurance company ( for about 4 months ) here I am patched up and feeling pretty good. Apparently my "hole" was 30mm and was patched with the Gore Helex Septal Occluder. I am just curious how people are feeling after they have had thus procedure and if they have had many problems. I have seen other types of devices used, and would like any I put I can get. Thank you and God bless.

I have read many of the posts and feel it important to share my experience so far.  I had at age 27 my first stroke.  After all the tests The Dr. thought it must have been from a dissection while wake boarding.  However, no proof could really be found.  All was fine until 11 years later when I had a second stroke.  Again more tests as I was not wake boarding with this stroke and they found the PFO.  I went through closure thinking this was probably the reason for the first stroke and all would be fine going forward.  It has been three years and Monday I am scheduled for an MRI to see if what I experienced recently could have been a small stroke.  I need to state that all my strokes and all my symptoms are in my visual field.  One stroke in the right occipital lobe and the second in the left occipital lobe.  My cardiologist confirmed with the bubble study that the PFO is still closed...so why am I still having problems.  Apparently,new studies are showing links between auras-migraines and stokes.  Let me state I never consider myself to have migraines but I definitely have had visual experiences lasting 15-20 minutes.  Although infrequent I have had them around the times of each stroke and immediately after the PFO closure.  I am at a complete lose as to the reason for all of this and what to do next.  My neurologist prescribed Topamaz but after learning more about this drug I don't think I am going to start this prescription... Anyone out there with some help and a good Neurologist in the San Antonio area?  Thanks all

LammingtonMan,

Just wondering who did your PFO closure and how are you feeling 2yrs on?

Hi everyone,

 

I just joined and have been reading everyone's experiences and wanted to contribute mine in case it may help someone.

 

I'm 48 yrs old and have had migraines since 13 but that has not been a major issue for me.  Definitely not a deciding factor in my PFO closure decision. 

 

At the age of 39 (09/2004), I had a stroke which left me with partial numbness in my left thumb and index finger.  The stoke may also have impacted my memory a bit.  I have a history of alzeimers in my family which may be a factor but I'm not willing to get tested for that yet.  At the time, the doctors did not know to perform a bubble study and therefore did not find the cause of my stroke.  I was told they couldn't find anything wrong and that I should take a 325 mg aspirin every day.  I ignored the doctors advice for several reasons (which I now understand was not a very smart thing to do) and continued about my daily routine.

 

At the age of 46 (10/2011), I suffered a TIA.  No permanent damage but an extremely unsettling experience none the less.  I went to the emergency room where they could find no evidence of permanent damage.  They did a bubble test and found the PFO.  I was told to take a 325 mg aspirin every day and was referred to a local cardiologist.  I took the aspirin as prescribed this time.  At least, long enough to mess up my intestinal tract.  At that point, I attempted a baby aspirin every day but my intestinal tract was still too sensitive so I discontinued the aspirin. 

It took me a year to get up the courage to see the cardiologist but I finally saw him in 10/2012.  He referred me to a Neurologist and Hematologist who both could find nothing wrong with me other than the PFO as a possible cause of the stroke & TIA.  They both recommended PFO closure.  I realized at that point that I needed to have the PFO closed.  In the meantime, the cardiologist put me on Plavix which I did for awhile.  Side effects were horrible so I discontinued that medication. 

I finally made the decision to have the PFO closed this month (09/2013).  I did not want to be on medication for the rest of my life especially considering the side effects I have with blood thinners! It's taken me this long to get up the courage to have it done but considering the fact that I'll most likely have another stoke (and who knows how debilitating that next one will be), I decided to go ahead.  The procedure was done on 09/17/2013 and I'm now recovering. 

My post-procedure symptoms have been:

- pea sized lump under right groin puncture site.  I'm waiting for it to dissipate on its own.

- bruising (as expected) in groin area

- allergic reaction to pain killer used in groin area (under-skin rash which showed up several days after surgery and lasted only a few days)

- tightness or pressure (twinges) in left chest.  I can't tell if it's psychosomatic or real.  I have problems with the muscles in the left side of my back and in the past, that pain has migrated through to the left chest.  So, what I'm currently feeling may be from my muscle problem, from the PFO closure, or both.  I can't tell.

- fatigue.  This could be from the medication I'm taking.  It's Brilinta.  I started on it 2 weeks prior to the procedure and noticed the fatigue then (along with other side effects);  however, since the procedure, I think it's slightly more pronounced.

- shortness of breath.  Again, this is a side effect for me of the Brilinta since I noticed it before the procedure.  It's manageable.

- slight headache.  This is also a side effect for me of the Brilinta;  however, it seems to have improved slightly since the procedure.

All-in-all, I'm doing very well.  I started walking daily on the trail (1 mile per day) yesterday (8 days post surgery).  I used to exercise strenuously daily (either 2 mile run or 14 mile bike ride) before the procedure, but will wait at least 1 month before I start that again.   I have trepidation about starting back to my hardcore exercise routine.  I'll have to play that one by ear and with the advice of my cardialogist. 

Doctor said PFO closure would be complete 6 months after the procedure when the tissue will have completely grown over the device.  BTW, the device is a 25 mm AMPLATZER Multi-Fenestrated Septal Occluder - Cribriform. 

I was in very good health before the procedure and was very active physically.  The only PFO symptoms where migraines and the '04 stroke and '11 TIA.  The migraines were not bothersome given they occur maybe 4 times a year and reliably last 5 hours each time.  The stroke/TIA and fear of a subsequent episode were the deciding factors for me to have the PFO closed.  I plan to return to my workout regimen as soon as I can but will be taking it quite easy during the next 6 months or until I get the final go ahead from my cardiologist that the device has been completely covered.  I believe that for me (so far), this has been a good decision.

All,

I am an Australian who is living in NYC and like everyone else, suffered a stroke and originally was not recommended to go through closing the PFO. Fast forward through a few months a separate neurologist found a large right to left shunt and recommended that I get the procedure done.

Unfortunately the insurance company is denying this procedure and now I am looking to move home so I can get it done there. Has anyone had any issues with getting it done back home?

Hi I tried to post earlier but I can't seem to find my post. I had my PFO closed on Oct 15, 2014. For the most part I feel fine, just like I did prior to the procedure. After about a week I started back into my normal routine of working out daily.

I do seem to have some side effects though. My optical migranes are now more frequent (several a week), I have also had numbness/tingling in both my right and left hands (never at the same time). That happened 3-4 times and lasts 2-5 minutes.

Also, when laying down my heart flutters.

Has anyone had these symptoms (i know many have had migraines but i haven't seen any posts about tingling/numbness)?

Also these things only happen in the morning. Im wondering if they can be a reaction to plavix (which i take in the morning) or made etter by the plavix.

Hello I am 41 female who just had a pfo closure a month ago, I have been experience shortness of breath and a very hard time breathing, I had chest pain but it went away, I am wondering if this will get better with my breathing.

I have never had any repercussions after my PFO closure. I didn't get to find out if it helped with Migraines because as I came off the Plavix (which I believe stopped my migraines for the first time) I went for a nerve block in my neck, which nicked the occipital nerve and caused a horrible response.

Auras all day every day. I am now 5 years out and down to 2-3 auras a week, and living life again over the past year.

I would love to know if the PFO closure stopped migraines for anyone.