Hi All,
Just found this site and don't really know where to begin. Let me start by saying that I had a PFO Closure with an Amplatzer Device on November 6, 2007. And I'm doing great! I have energy and stamina again that I haven't had in several years now.
I'll give those of you looking some further information. (This will be a long entry, but I have a lot of first hand information that I think you will relate to). I am currently 57 years old but my PFO was only discovered this summer when my cardiologist (who I was seeing for another problem) followed his gut feeling and ordered a bubble echo (which is the non-invasive means to diagnose a PFO--a regular echo won't do it). Bottom line, it was discovered that I had PFO 1.6 CM (or between 1/2 and 1 inch). While it is true that a number of people do have PFOs that are tiny (barely discernable) and seldom cause problems there are many of us with big PFOs that have many symptoms and problems. The mechanism of how a PFO causes problems depends upon what is referred to as "shunting". To explain: when your heart beats, non-oxygenated blood returns from your body to the top chamber of the heart on the right side (atrium) where it flows down into the right ventricle (lower chamber) and through the pulmonary blood vessels to receive oxygen from your lungs. It is then pumped back into the left atrium and from there into the left Ventricle (lower chamber) and pumped back to the body to deliver oxygen to all of your body's cells. What happens with PFO shunting is that a percentage of your non-oxygenated blood (when it returns from your body) goes through the PFO hole directly into the left Atrium (a PFO is a hole between your right and left Atrium--it is supposed to close at birth but in some of us doesn't). Therefore it bypasses the lungs and a certain percentage of your blood is pumped back into the body without having received any oxygen. The big danger with strokes is that if even a tiny clot of some sort enters the right atrium and is pumped through the PFO hole instead of following the usual route of going to the lungs, the clot may very well travel to your brain causing a stroke. Some people only shunt when the pressure inside the heart is increased for some reason. Other people shunt most or all of the time. In my case I was shunting all of the time, even at rest. Once the cardiologist, who specializes in PFO treatment, explained the size and extent of my shunting as well as revealed to me that I met all of the indications that determine if your PFO is problematic, I knew that I had to have it closed. I did much online research and was certainly anxious about it and felt extremely fortunate that I had not had a stroke and didn't want to push my luck much longer.
Now for further info about my particular experience and problems. First I'll start with the procedure and aftercare since I know some of you are struggling with a decision. The important thing is to find a cardiologist who specializes in PFO closures and who has done a lot of them. You don't want someone who only does a handful per year. Usually they will be located in a medical center setting. In my city (mid-size) there are 6 hospitals but he is the only one in the city that PFOs are being referred to. Technical ability and knowledge is important. Ask what their complication rate is--what their complications are and how many they do per year.
In my case, my cardiologist insists on you being awake during the procedure because he needs you to follow commands during the actual insertion of the device. I was really anxious about that but they gave me just a little IV sedation in the cath lab and I was awake but not anxious. The actual insertion of the device went very smoothly and without problems. The only problem I experienced was that I kept oozing blood at the insertion site in the groin. When it kept oozing the resident on call held pressure too hard and too long and caused a blood clot in the vein in my groin (which we didn't discover until 2 weeks after the procedure). That is the only real issue I'm having. But, luckily I have not suffered any major problems related to the blood clot, although it will be something that I'll have to take precautions with on down the road.
When I came out of the cath lab after the procedure was complete, my family's immediate reaction was "your color is great--the best you've ever had. You look great. You look like you had a make-up session done in the cath lab."
The first week, I only had an occasional slight pain in my chest. I didn't have any headaches (which was a welcome relief for me). I did have a few minor body aches for a few days--kinda like a mild case of the flu. My Dr. told me that some people will have a slight inflammatory reaction to a foreign device being in your heart and may have chest pain and some irregular heart beats but it usually doesn't require any kind of treatment and will go away soon and last no longer than 6 weeks. I had only an occasional irregular heart beat. I had the procedure done on Tuesday afternoon, stayed one night in the hospital going home on Wed. That Sunday, I went to church. I really limited my activity as far as not lifting, bending, pulling or too tiring activity for about 1 and half weeks. I didn't lift anything over 10 lbs for 1 month (different Drs. have different instructions regarding activity). But for the most part, it was a piece of cake compared to other things I've had done. On Friday (1 1/2 weeks after procedure) I spent about 5 hrs at the mall doing Christmas shopping. I am now 2 months from procedure and truly am doing great. I take Plavix 75MG and Aspirin 325MG each day. I will have to take it for 4 to 6 months. My Doctor explained that by 4 months (in almost all cases) the heart has grown tissue over the device and thus the hole so that if you were too open up your heart you couldn't even see the device. Therefore, you don't have to stay on blood-thinner except until the device is completely closed over (about 4 to 6 months--usually 4).
Now for my personal problems and something about me. I am a nurse and spent many years working in the ICU. But, had essentially no experience with PFOs and take my word for it, nurses are anxious about having anything done. Seen too much and know too much. I have 3 daughters, born when I was 24, 26 and 32. I was always energizer bunny, getting up at 5:30a and going to bed at MN for years. I had a type A, perfectionist personality and was always on the go. But, I've had migraines for as long as I can remember (with and without aura). In addition, I've had Raynaulds syndrome (hands and feet that get cold, blue, red and white--hurt when exposed to cold) for as long as I can remember. My cardiologist tells me that most all of his symptomatic PFOs have history of Raynaulds. I've had weird neurological episodes since my 20s that no one had an explanation for and I ignored them in my younger years. Six weeks after my first child was born, I had a dilated pupil that didn't react to light for 24 hrs (not a good thing to have). At the time, was blamed on migraines. When pregnant with my 2nd child, I had an episode where for about 10 minutes I couldn't say what I wanted to say--my words were jumbled just like with a stroke. Again, blamed on migraines. By my 40s I was having significant problems. Big time migraines, increased tiredness, racing heart for no reason, spells where I'd feel like I was going to pass out AND I started having temporary blindness in my right eye (only last about 45 seconds). That symptom is usually considered a TIA for sure, but because all of my tests were negative they again attributed it to migraines.
By the time I turned 50, I had developed fibromyalgia (I was interested to see that others also have fibromyalgia), uncontrolled irritable bowel, and daily headaches--some of them were migraines and some were from fibromyalgia. Often I felt as though I was in a daze and couldn't think straight. My memory became the pits. My stamina and energy were terrible. Finally at age 52, I had to quit a career I loved and take disability retirement. For the past 5 years, I've continued to become worse. My energy level and stamina continued to worsen. My fuzzy thinking and feeling like I was in a daze worsened. I continued to have all of these weird neurological episode that the Drs blamed on migraines or me being a hysterical, post-menopausal female (although they were careful not to actual say that aloud). By 2006, I was having frequent episodes where I'd almost pass out and in the fall of 2006 I underwent and failed a Tilt table test and was diagnosed with "neurocardiogenic syncope syndrome"--which means that I have extra sensitive vagal response that triggers my body to almost past out. The past couple of years, I reached a point where I could no longer sleep flat but eventually got up to sleeping propped up on 4 pillows otherwise I'd wake in the middle of the night with a headache, heart racing and feeling faint. I became so discouraged because I knew that was something wrong that no one was finding, but, meantime, I just continued to feel worse. Actually, I have always had a gut feeling that all of the weird episodes I had that were blamed on migraines were not migraines but instead were something strange that no one had found. Well my gut was right. When the cardiologist who closed my PFO, evaluated me he told me that I'd been having TIAs (mini-strokes that resolve without damage) since my 20s and that all of the things that had been blamed on my migraines were in fact as a result of my PFO not migraines. So, I am extremely fortunate that I didn't have a stoke. I know I came close many times.
So, how am I doing now? GREAT! The procedure wasn't bad at all. The worse thing I'm dealing with is all of the bruise places all over my body from the Plavix and Aspirin. I have only had 1 migraine and that was because I unknowingly ate some food with nitrates in it (I discovered some time ago that I'm very sensitive to nitrates and they trigger migraines right away). My headaches have tremendously improved. I've had a couple that were due to my fibromyalgia but even so they responded much better to Tylenol and went away quickly.
But most impressively is how much better I feel. My Raynaulds is better but not gone. My hands no longer get blue but will still get white to cold. My color is so much better. I've always been very pale even with make-up. Since the procedure, I've seen acquaintances, who didn’t know about the procedure, who told me that my color looked great and that I looked great. But MOST IMPROVED is my energy and stamina. Before Christmas, one day I left home at 9am and shopped all day, not returning home until late that evening. I hadn't been able to do that in at least 10 years. Also, I am slowly getting rid of the pillows at night. Now down to 2 and not waking up with headaches or fast heartbeat. My Doctor says that I probably won't see the full benefit of the procedure for at least 4 months.
So, bottom line is that I'm extremely grateful to my Doctors for finding this and glad that I had it closed. If you still have questions after this very long entry, please feel free to ask.
MiMiFlo