PFO Closure - Open Heart or Transcatheter

MiMiflo

I have finally figured out that if I bend forward or lean forward, it causes a problem.  Yes, I am experiencing the same thing!  If my husband shows me something on the computer and I lean forward on the desk with my arms in front of me, I feel it.  It gets tight and I have pressure that is not comfortable.  It takes a minute for it to go away.  I was under the impression that people can get back to normal activity within the first week.  From my experience, I would find that physically impossible.  Maybe the stroke and TIA's have taken there toll on my body.  I do know that having the headaches gone to minimum has been the absolute best !!!  But, to be honest, I get totally freaked out by the fact that I have this foreign object in my body, IN MY HEART!

God has blessed my life with these children.  They are what keep me going.  When I had my stroke, I laid in the hospital bed, praying like a crazy person.  about 4:00 a.m. with my husband sleeping on the little bed next to mine, I started getting feeling back in my left side.  I can only say that I felt God answer my prayers.  I knew at that moment that he was helping me.  Within a few hours of that, I was regaining the use of my left side.  I kept wondering what would these kids do without me running around taking care of them.  I knew I had to get better.  I feel so blessed and I appreciate my life in ways that I never could before.

I am grateful that we are all able to talk.  This is priceless therapy for me.  When I see a new post come up on my email, it is a reminder that I am not alone in this journey.  I am sure there will be many more to come...

Tafish,

I am 5 weeks post op.  My doctor said the same thing.  He said my pain had to be associated with the TEE (damage that would heal).  He had never heard of it either.  There seem to be a lot of people with the same feelings here on this site.  My doctor hasn't had the procedure but all of these people have.  Interesting.  I am somewhat convinced that it is the heart at this point.  I am limited on my activities as some things cause chest pains if I over do it.  I am definitely not back to doing normal activities.

The beta-blocker is for the heart palpitations or racing.  It slows down the heart.  That has been my cause of angst, lately.  Are you having the heart racing problem or the feeling of something stuck in your chest?  Advil did minimize the pain for a couple of hours at a time with the "pressure, stuck in my chest" pains.  The beta-blockers have kicked in and I am not experiencing the heart racing out of control. 

Another interesting note, I have been able to sleep on my side for the first time since my stroke in September 06, the last couple of nights.  Since my stroke, I would get terrible migraines that would wake me up if I turned to my side during the night.  I have only been able to sleep on my back.  I would also feel major pressure in my chest at the same time.  My doctor had never heard of it and dismissed it but the closure and beta-blockers have fixed this, at least for now.

I will keep praying.  I hope this is helpful.

Patched,

Earlier, I mentioned that our church is doing a "31 days on our knees" prayer emphasis. Yesterday, we had a visiting teacher/author who has several books regarding prayer. One of the things that he shared was that just last year he realized that God is at work all around us each day, but that we usually don't see because we don't ask. He said that each morning during prayer time, he asks God to each day show him someplace where he's been at work and challenged us to do the same--stating you'll be surprised by the results. This morning, I prayed that prayer. When I signed on I read your entry about lying in that hospital bed at 4am, praying. Wow. Chills went through me. You are my "Where I've been at work" that God has shown me today--just a few short minutes after I asked. Thank you for sharing that.

Tafish,
I am also very new to this site, but already know that it's a real help to me. I just had mine inserted 1 month before you. So maybe we can travel this journey together. If you've read my very long first entry, you probably already know. (I tend to be very long-winded. I've tried being a woman of few words, but finally gave it up as being a lost cause). Which device did you have inserted?

I hope you are doing well from the stroke. Gosh, after reading these entries I am totally amazed that with all of the TIAs that I had (called migraines when they occurred) that I never had a stroke.

I'm also taken back by all of you that have suffered significant chest pain. Again, I've been lucky there. Maybe, it’s because I'm older than you all and my body has been dealing with so many problems for so long that it doesn't react in the same way as it did when I was younger. Actually, I'm serious about that. Three years ago, our family went through a really tough time with cancer. My 28 year old son-in-law and my husband both were diagnosed with Non-Hodgkin’s Lymphoma within 6 weeks of each other. Both underwent chemotherapy. My son-in-law suffered much more from the side effects of the chemo than my husband did. Actually, my husband had no nausea, no sore mouth, none of the things than you usually associate with chemo. My son-in-law had a terrible time. He is an OB/GYN physician and I remember him saying that Don, my husband, probably wouldn't have as bad of side effects because the younger you are the more reactive and fast-growing your cells are and therefore many time the effects of chemo are worse. I don't see why that wouldn't be true in other situations. Just thinking out loud.

My doctor did tell me that because it is a foreign object in your tissue that many people have an inflammatory process that causes chest pain and irregular heart rhythm, especially fast heart rate that he called Arial tachycardia. He said that the inflammatory process doesn't usually last past 6 weeks and if very problematic, he puts some people on an anti-inflammatory (not an over the counter one--I think he said "indocin" which is one of the old time ones) and something for the heart rate (but I don't remember which one). But, he said the inflammatory process is just a matter of getting through it and will not affect the function of the closure.

As I mentioned before, I did feel like I had a mild case of flu and I also ran some low-grade fevers (which I think was from my inflammatory process). Although, it could have been from the blood clot that I ended up with in the vein in my groin. That ended up being my biggest problem after the procedure.

My Doctor also told me that I should be able to return to normal activities (except restrictions on lifting and strenuous activities for 1 month). I will tell you that I put more restrictions on myself than they did. I just decided that I wasn't taking any chances with this sucker and was "religious" about not lifting or doing any kind of activity that involved using my chest area or increasing the pressure inside my heart for 1 month. I got out, drove, went to church, shopping and other activities but I "babied" my chest and my heart. I really think that made a difference. I can also tell you that after 1 month, I relaxed my restrictions and I don't think I've progressed as rapidly. If I had it to do over, I'd probably continue my own restrictions for at least 2 months maybe even 3. Please understand that I'm not giving you medical advice. I have to be really careful about doing that. Since I am a nurse, I have a responsibility to make sure that I don't make anyone think I'm giving them medical advice. Anything I tell you on here is my personal experience and opinions and not professional advice or opinions

I am just thinking out loud, but I'm wondering if because your hole was so small that they stretched it more inserting the device and that in itself is causing more pain. I don't know of course, but that would seem to make sense.

Just last week I told my husband (and that was before I'd read this site) that in the future I really believe the doctors will realize that the recovery period after the insertion of these devices is more complicated and requires more time and restrictions than they currently think. I think they will have more restrictions--especially with lifting, pulling, pushing, and physical activity. As I mentioned earlier, this is really still new medical science and they don't have any long term statistics and experience. We are going to be their statistics. However, I'm not sure that the physicians are really "listening" to the problematic statistics of problems during the recovery phase.

I saw my doctor at 1 month and don't see him again until 4 month after insertion. I don't know if that is typical or just my very busy doctor who follows this schedule because he is in the cath lab 4 days and in the clinic seeing patients only 1 day a week. When I saw him at one month (other than being very upset that I'd gotten a blood clot) he told me I was doing extremely well--and truly I was. When I asked about lifting. He told me that I could lift or do anything I'd done before the procedure--that it was impossible for me to dislodge the device. So about 4 days later, I took care of my 8 month old granddaughter (who is a chunk--weighs about 23 lbs) and I can tell you that my chest was sore the next day and I didn't fell as well. It really took me about 3 days to feel as good again. I noticed that if I'm on my feet for a long time (like my shopping marathons before Christmas--my stamina was so much better that it allowed me to have marathon sessions), but my chest was sore by the end of the day. However, after a night of rest, the soreness would be gone.

The other thing that I think helped me was not sleeping flat. I had been unable to for the last couple years. So, after the procedure, I continued to sleep propped up my 4 pillow incline for about 3 weeks. Since then, I've taken all of the pillows away except two. I'm still sleeping on some incline. My theory (and just my theory) is that when you lie flat the pressure is increased in your heart, but that when you are inclined the law of gravity means less pressure in that the blood more naturally flows downward as it should and puts less pressure on the middle where the hole and device is. I'm sure the doctors would probably think I'm nuts, but I'm telling you that not one doctor had an explanation as to why, around 2 years ago, I had to start sleeping propped up. Since my PFO repair, I'm able to sleep more flat and not wake up with a headache, racing heart and feeling like I'm going to pass out. I have never smoked in my life so I have no lung disease. There was no other explanation. I also know that if someone has lung disease they can't sleep flat--they have to sleep on pillows. Might be worth a try to see what happens.

Keep me updated on your progress and we'll get through this together.

MiMiFlo

i didn't think there was many side effects for having the procedure done, but after listening to all of your side effects, i am seriously thinking that what i live with is what i am used to. i don't think i would like symptoms that i am not used to. I haven't had This just loads of chest problems and irregular heart beats..... and of course short of breath, but i still do everything i want to, also the symptoms i put up with i have had for a long time, i have never been able to run or over exert myself because i get irregular heart beat that makes me feel like i will pass out........ but that is how i have lived for a long time.

I still work full time, look after a family, horse ride and muck my horses stables out and everything else that comes with having horses, walk my dogs. So i guess all in all i am lucky. My point is maybe i don't need the procedure done yet, as my quality of life is good, well for me it is. Any way i think i have more time to think, as from what i have read, i have been lucky that i haven't had the symptoms and effects that most of you have had......... I think i might contact my consultant and be sked to be monitored and see how it goes from there

 

god bless

Take care x

 

Dinby, although I understand your reluctance, but remember that this is a very small representation of what happens post procedure. Most people, like the gentleman after your post, don't have a problem. When you read about this online, it is usually the people who have a bump in the road.

Welcome, Bobby181207. Glad to hear that you are doing well. I am impressed that you have been able to exercise so much so soon. May your recovery continue to be a smooth one! And the rest of the hole close completely.

Best,
Karen

Karen:

Thank you for the words of encouragement. I am indeed more confident now that my recovery is progressing normally and that I will be free of symptoms before too long.

Dinby:

I must agree with Patched: I only found my way to this forum because I was looking for people who could help me understand my symptoms. Obviously, if I had felt no discomfort, I would not have come searching. And I am happy to say that I seem to be doing better than some of the others who have had the same operation. So there is no reason for you to assume that you will have the worst of side-effects. I was operated on in Vienna by a group of physicians who do transcatheters several times a week, as they explained to me. So there were grounds for my surgeon depicting it as a routine affair; for him it really is. After talking to him today I get the impression that the symptoms often reported, i.e. pinching in the chest, palpitations, irregular heart rhythm etc., are quite well known, yet seldom a cause for concern and vanish by themselves within weeks and are by no means life-threatening. I also observe that at least some of the symptoms come from too much self-introspection: if you monitor yourself too closely, you will always find a cause for concern. Before the operation I had an ambulance called twice to take me into the hospital, thinking I was going to have a heart attack as I could not sleep and my heart was racing. As it turned out, at the root of it was probably the realization, for the first time in my life, that I had a hole in my heart, i.e. I developed this conception of a heart ailment (coupled with the fear of a stroke recurring). Several cardiologists and a couple of psychiatrists told me that this occurs regularly at every hospital. Someone comes in complaining of chest pain and fearing a heart attack. But there is nothing physically wrong with the person, they are merely sufferig angst at the notion that their heart is not in order. I think about 40-50% of what I now feel in my chest from time to time is my subconciousness alarming me that there may be a cause for alarm -- when in fact there is none really.

 

Hi all,

Have not been on this thing in forever. Almost forgot where the computer is!

I didn't have any problems after the procedures except for still having headaches.  The neurologist found that I don't need to have the 2nd hole closed via an open heart procedure.  He put me on amitriptilene for the headaches and that has helped some.  He doesn't believe my headaches are migraines but I need to go for a followup appt this month.  After the MRI he said that I have bright spots in the white matter of my brain which is nothing and not causing me any of the problems I have.

Still have the back thing going on and the pain is so bad that some days it's hard for me to walk.  I am in the process of trying to get a disability for my back but have been told I probably won't get it.  I got an attorney to help me.

I can empathize with all of you.  I wish all of you well and will pray that all of your problems are solved and you are doing better soon.  Dinby, hang in there.  I hope they can close you up real soon.

Hi all and especially Karen,

For some reason, I've not received alerts when messages are posted. Just decided to log on today.

Karen, I am glad to know when your son is having his surgery. I will be praying for him, your family and the medical team. I feel that things will go well, but I know that mothers can't help but worry.

I am doing very well. Now 10 weeks out. I'm afraid to make this statement because I'm afraid I'll jinx myself, but my headaches are essentially gone. That alone makes me feel like a new person. My energy level and stamina continues to improve. And I know that most people will think I'm crazy for saying this, but I'm finally beginning to gain some weight. I am petite so my weight has always been fairly low. But during the summer of 2006, I had acute gallbladder inflammation and low grade pancreatitis during which I lost 15 lbs by the time I was able to have my surgery. I lost down to 103 lbs (I'm 5'3") and simply could not put it back on. When I was younger, 103 wasn't bad, but as my grandmother always said, when "you get older you need some flesh to fill in the wrinkles". This past year, I always looked gaunt and sickly--way too skinny. Since my PFO closure I have gained 7 lbs--now weighing 110lbs. I think it has become very obvious that I was in desperate need of having it diagnosed and closed. (now I may have to start worrying that I won't quit gaining since I've gained 7 lbs in 10 weeks).

I will just be so glad when I can stop the plavix. I have black and blue places all over me. Just a small bump results in bad bruising. But, hey, such a small price to pay.

Dinby,

I agree with those that say to remember that people on this site are more likely to have problems. In my case, I had googled post PFO care and found this forum. I am one of those that has to read everything I can about things. In my case, I really have done very well and had very few symptoms. The PFO closure has truly made a "new" person out of me. I am so very thankful. But, the main thing I would do if I was having doubts would be to talk to my physician (I think you refer to them as Consultants) and be very open and honest with him about my feelings and ask him to answer or address any concerns or fears I had. (actually I did do that. My poor physician probably was glad to see my pre-op visit end, I had asked him so many questions.)

Oh, one thing I did notice was that most of you had TEEs. I did not have a TEE and my physician doesn't plan to do one. I was diagnosed with a "bubble echo" which is specific for diagnosing circulation patterns in the heart. During the procedure, my Dr. used what is called ICE (intracardiac Echo) which is a tiny echo probe on the end of a catheter that is threaded though the groin vein directly into the heart and stays in for the entire procedure. It is used in place of TEE. I wonder if that is why I'm not having the chest pain and "feeling of chicken bone in my chest" that most of you have. When I return for my 4 month check-up, the doctor will evaluate my PFO closure with the bubble echo. He expects that tissue will have completely grown over the device by then and hopefully I will be able to stop the plavix.

Have a great week.

MiMiFlo

Hi all - I had a PFO closure in early December and have not had an easy recovery since then. Beginning two days after the procedure I have had headaches, which I had not experienced beforehand; each and every day, some more severe than others. My cardiologist and neurologists are not concerned. While I appreciate that, I really want some answers. Have any of you experienced this? How long did they last? One of my doctors seems to think that until the tissue fully grows over the device, I may experience the headaches. I have also gone off of the Plavix, as I did not have a favorable reaction to the medicine, however, I remain on a full Aspirin, and have now been prescribed to go on Topamax. Looking for some common symptoms... Thanks!

Hello everyone,

I've read this forum a few times since my closure November 16,2007 and decided today I would join.

It has been so helpful reading all the posts from everyone and realizing that what I've been experiencing is not so unusual. I too, had 3 TIA's in June of last year. One affecting my left eye and right side. I recovered from them physically except for a crippling fatigue. TEE showed a PFO with shunting and was sent to Toronto for closure with the amplatzer device. They had to remove the first device and deploy a second one as my whole atrial septum had an aneurysm as well as the PFO and the first one they deployed wasn't large enough to stablize the area. They deployed the largest one "35mm" or 1"1/2".

The healing has had it's bumps in the road. I was back in emergency a couple of weeks with a very fast heart rate and dropping blood pressure which was causing exhaustion. I was taken off BP medication which I've been on since my early 40"s(I'm 49).

I was also put through a stress test which showed that my sinus rythym is not right. The electrical beat is supposed to start in the sinus node at the top of the right atrium but mine, at rest, is starting in the bottom of the atrium down by the device. When I got going faster on the treadmill it kicked in switched to the proper sunus node.

Since I've been home, heart is not as fast and BP seems to be normal. The problem I've been having is feeling extremely tired, chronically swollen lymph glands in my nect and a mild sore throat that comes goes as well as a low lying headached that oo, comes and goes. I know the Dr. in emergency(head cardiologist) said that my heart had been through a very invasive procedure and was reacting to it. I'm seeing my own cardiologist this week and wondered is there anything I should be asking him. He's young and quite cavalier about the whole thing. Kind of made me feel like I should be back to normal within weeks of the procedure and it's just not happening. My friends and family have been alarmed at how tired I look but I just can't seem to shake it.

I'm still on Warafin and aspirin. I look forward hearing from others who have gone through this. Very hard to talk with friends and family as I start to feel like a downer.

canadagirl 

Hi canadagirl, I just wanted to pop in and welcome you to healing well's forum.  I hope you find it informative and supportive as well.  We have many great members here always willing to help, lend advice. 

I also have a PFO which was just found 2 yrs ago when I was 32.  My cardiologist has discussed possibly closing it but I am not a canadiate for the surgery at this time.  I have Dysautomonia which has greatly effected my heart and blood pressure.  I had a pacemaker implant 2 yrs ago since my HR was in the 20 range per minute.  I also have extremely low blood pressure so, I take several medications to keep it up during the day.  I also have had Multiple Sclerosis for almost 7 yrs now.  I am high risk for TIA's but I guess you just trade one danger for another with having surgery.

Please dont worry about typing mistakes we all make them and really do ignore them.  Again, welcome we are happy to have you join us.

I had previously done some reading up on that already and was wondering if that's what it might be. I do plan on mentioning it to my cardiologist on Tuesday. I know they gave me a hefty dose of antibiotics in the IV during the procedure but I've had none since. Do you think the size of the device affects healing time? I know when I was in emergency they did a chest xray and many of the DR's had not seen anything like this before and were shocked at how large the device , including head of the cardiology department. I should clarify that they stopped doing this procedure a few years ago in my city and that's why I had to go Toronto.Thanks Mamanuss and ELS.