Recent PFO Closure Experience (Amplatzer)

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Apatchie
New Member


Date Joined Sep 2011
Total Posts : 14
   Posted 9/4/2011 5:03 AM (GMT -6)   
I am a male in my late 40's with a history of stroke and multiple TIAs. With no obvious source for the strokes, the docs looked for and found a PFO in my heart. I underwent closure earlier this summer and thought I would share my experience here on HealingWell since I found past threads on the subject to be very beneficial.

Stroke and TIAs
I had my first CVA (stroke) several years ago out of the blue. As with many other people, it happened in the aftermath of pushing myself and burning the candle at both ends. I was working a demanding full-time job (primary career), being very active with my kids as Scout leader etc, and also going to school part-time working on PhD. When I had the stroke, I had been studying aggressively for a graduate level physics class and had stayed up until nearly 4:00 AM studying for a big exam. I went to bed and slept for 2 hours, then got up to go take exam first thing and head in to work. When I awoke, I noticed problems with my vision but attributed it to the bleary-eyed exhaustion that students are so familiar with. I was so intent on taking my exam (Type "A" personality) that I just shrugged it off, jumped into truck and raced to school in my usual distracted fog of equations, graphs, and visualization so problems seeing the external world did not really register at the time. During the exam I had trouble seeing what I had written and I thought "Boy I am REALLY tired" but it was not until I had handed in the exam and started paying attention to what was going on around me that I realized something really serious had happened. In the center of my visual field I could not correctly interpret information - text was just squiggly lines, clocks didn't look right, faces were a jumble of abstract features. This was only in a small area right in the center of my vision, in the rest I could read and see faces etc just fine.

So off to the ER I went, where it was rapidly determined via CT scan that yes I indeed had a stroke and lost a chunk of brain about the size of a ping-pong ball. Due to delay in recognizing what had happened, I had no chance of recovery and the standard hospital treatment of "Here's an aspirin, let's watch you overnight and see if you survive" did not improve my situation. After meeting with docs and neurologist I learned there was no standard therapy for an unusual defect like mine, so I wasted no time and invented my own before I was released from the hospital the next morning. I will not bore anyone with the details but suffice to say that a regimen of coloring books and constant repetition allowed me to regain / retrain full function over the next couple of months.

After the usual blizzard of doc appointments and tests, no source for the stroke could be found so the cardiologist checked for PFO. They found the classic presentation with shunting on valsalva etc. At that time the cardiologist proposed doing a closure, but the best evidence at the time indicated that risk of future stroke was about the same whether one followed conventional medical therapy (aspirin a day) or had a closure. I elected to try the medical therapy and for the next 4 years had no further events.

During the intervening time I got serious about my health and lost a lot of weight (90 pounds) and became very active, riding bike etc. After a long bicycle ride in scorching Texas heat I suffered a lot of cramps and believe I must have been pretty thoroughly dehydrated. A couple of days later while sitting in the easy chair watching TV, I had a TIA that resulted in temporary loss of ability to write longhand and to type certain letters on the keyboard. This time around I was more prepared and recognized the symptoms within minutes of onset due to the weird "disconnected" feeling that came with the TIA. Off to the ER, where they found no signs of damage on CT and sent me home. This routine was repeated several weeks later - strenuous physical activity a couple of days prior, then a TIA, trip to ER reveals no damage.

The neurologist told me at this time that I needed to go back to the cardiologist and see about PFO closure, so off I went. (continued next post)

Post Edited (Apatchie) : 9/4/2011 6:02:50 AM (GMT-6)


Apatchie
New Member


Date Joined Sep 2011
Total Posts : 14
   Posted 9/4/2011 5:31 AM (GMT -6)   
(continued)

PFO Closure Experience
I underwent PFO closure in early June here in the Dallas Texas area. The cardiologist who did the procedure used the Amplatzer device as he had significant experience using it. He was formerly a university teaching hospital prof so I was comfortable with his judgment. I had researched the procedure pretty thoroughly so I knew what to expect, but I badgered the doc with questions anyway to the point that he was getting exasperated with me. smilewinkgrin The way I looked at it, he has lots of patients but I only have ONE heart so I wanted to make sure I covered all the bases.

The procedure was much like the folks here have described. I was checked into the hospital early one morning and prepped (groin area shaved etc). They gave me an IV with what they called "happy juice" but did not knock me out. I was feeling pretty happy and calm as they took me to the cath lab so I guess the happy juice merits its name. Once there, they shifted me over from the bed to an operating table that had a number of nearby monitors and a large X-ray machine (for fluoroscope real-time viewing during some procedures). They wrapped a warm blanket around me and I quizzed the radiology techs about their machinery until the doc arrived.

The surgery itself was about as easy as a procedure could get. They swabbed down the groin area with a lot of betadine type liquid, then the anesthesiologist / nurse gave me a bit higher dose of happy juice. They did a couple of injections to numb the site, but I felt little or no pain at all and was feeling a bit of a warm glow at the time. The happy juice faded fairly quickly and I was back to pretty much full alertness as they made the incision and introduced the device catheter and ultrasound camera catheter.

For those who worry about the trauma of being cut "down there", fear not - for me there was zero pain and in fact very little sensation of any kind except for the tugs on my leg as the catheters were put in. I was amazed after being discharged the next morning to see that the incision was so tiny it was hard to even see on my leg - it was about a quarter inch long and had no visible sutures or anything - healed up very nicely, no scar, no pain.

During the procedure I was able to watch the displays as the device was maneuvered around and put in place. They would occasionally hit me with another jolt of happy juice and things would fade out for a bit, but I was awake enough for most of the procedure to have very good recall of the events. In some ways it was like watching a movie, there is zero sensation as the device is moved around in your heart, it is like watching it being done to someone else.

A technical representative from the Amplatzer device folks was present during the procedure and he and the doc discussed the device placement in real time. After it was put in place the rep thought it should be flattened out more, so the doc did a bit of repositioning and cinched it down, what he called "nudging" it. That was the only time during the entire process that I felt any physical sensation, and that was just a bit of a pressure sensation - still no pain.

After they took all the gear out and closed the small incision, a nurse put pressure on the site for about 5 minutes continuous. It did not hurt, but was a bit uncomfortable. They then rolled me back to my room in the cardiac ICU, and then started the only part of the process that gave me trouble. Specifically, I had to lie flat on my back in the bed and motionless for 5 or 6 hours. I have a bad back, so this soon was agonizingly uncomfortable. After sweating it out and being reluctant to "wimp out" and ask for help, I finally told the nurses "Help!" and they would come in and gently roll me to the side and put a towel under my back. After about 15 minutes this would be agonizing, so I would call the angels and they would roll me the other way. Made a huge difference, but I was still sweating like a draft horse until the magic moment arrived when I could sit up and have something to eat. Wow what a relief.

The rest of recovery was very straightforward. They got me out of bed that evening and had me walking several times, then early the next morning I was sent home and told to take it easy for several days. Nothing to it.

The aftermath has been uneventful for me. Several people have described a sensation they call "stuck chicken bone", but for me the only thing I have felt is a couple of times a sensation like you get when a burp is kind of stuck half way - not a choking or gagging sensation, just a pressure in the esophagus area. The duration of the sensation was never more than a few seconds for me and it has happened only about 5 times in the following months.

(more info in next boring post)

Post Edited (Apatchie) : 9/4/2011 6:03:51 AM (GMT-6)


Apatchie
New Member


Date Joined Sep 2011
Total Posts : 14
   Posted 9/4/2011 5:50 AM (GMT -6)   
(continued)

Unlike many surgeries, there is little recovery time required for this process. I was under orders to take it easy, but since I have a desk job I was able to have the procedure done on a Wednesday morning and returned to work the following Monday morning. I had to take things easy for several weeks, no lifting weights more than 10 pounds, no bike riding, etc, so I decided that I would walk. Here in Texas it is brutally hot outdoors most of the day, so I decided to hit the local mall and walk with the older folks every morning before work.

Much to my surprise, the moderate walking turned out to be much more beneficial to my health (blood pressure, blood sugar, general feeling of wellness) than the intense exercise I had been indulging in previously. I am a Type II diabetic and monitor blood sugar closely, the walking improved my control by nearly 20 points average. I already had a heart rate monitor that I used on the bike, so it was easy for me to keep track of heart rate and make sure I didn't push it. The walking worked quite well and the doc was very pleased with my recovery. A bubble echocardiogram at the one month point revealed the device was still in place with no obvious residual shunt. At that point the cardiologist told me to "go for it" and removed limits on my exercise, I was allowed to resume riding bike etc. In fact he told me that walking was not enough, the only way to make the heart stronger was to push it hard.

So for me, I am pretty much back to normal. I have been carefully ramping up my exertion level, although the doc told me to "go for it" I believe it is best to take things a bit slowly.

I have not noticed any miraculous changes from having the hole closed, just some peace of mind in knowing that I did what I could to try to prevent future strokes. Interestingly, while they were placing the device and had the ultrasound camera in my heart they found that there was actually shunting on every beat of my heart instead of just during valsalva. I thought afterwards that maybe I would see more endurance, clearer thinking, etc - but no such luck. I have not noticed any positive or negative effects that I can attribute to the device.

I am still in recovery mode folks, 3 month point is very near. Hope this info proves useful to some of you considering the procedure.

Post Edited (Apatchie) : 9/4/2011 5:59:55 AM (GMT-6)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 9/4/2011 8:55 AM (GMT -6)   

I'd like to extend a warm welcome to you !  Your story is amazing and I know it is going to touch so many people's lives who read here in HealingWell.  I am keeping a link to your thread as a reference so I can pull it up for people with questions about PFO closures. 

Thank you for sharing and encouraging others! I hope you continue to stick with us here in the forum.  Your knowledge is like gold.
 
I am glad to know your procedure went so well and congratulations on the 3 month post-op anniversary.
 
Again a warm welcome.
 
Kindly,
Kitt

~~Kitt~~
Moderator: GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

Apatchie
New Member


Date Joined Sep 2011
Total Posts : 14
   Posted 9/4/2011 10:10 AM (GMT -6)   
Thanks kitt, I appreciate the kind words. They say that we can all teach by example, if that is true then my life provides a wealth of learning for folks in the form of "This is how you SHOULD NOT do it...." tongue

I suspect my stroke experiences might be the most useful for readers. I was surprised to find out that there was no standard therapy for people who suffered unusual defects like I did, and that they essentially turn you loose on your own to cope (or not) as best you can. I am a scientist and engineer by training and attacked the problem at its roots after a crash course reading a hundred or so papers on the subject while I was in the hospital that first day (a laptop with WiFi is a handy thing).

There are a thousand medical opinions out there as to how the brain works, how memories are stored, how to recover function, etc. After reading much conflicting data on the subject, I gave up on trying to understand how it worked and just concentrated on trying to regain function. I reasoned that the most effective way would be to emulate the learning process by which children store the deepest programming on motor functions etc. Rather than despair at my inability to master fine hand-eye coordination with the visual defect getting in the way, I decided to try massive repetition of gross movements. Accordingly I had my wife get me some coloring books (standard pre-school types with simple pictures and thick black outlines, Veggietales worked great tongue ) and began practicing immediately. It took me a good bit of time to master getting the crayon to touch the paper where I wanted it to, so I broke the movement down to its core motions and practiced them over and over and over, starting with very slow motions and then gaining speed over time. Once I could get the crayon to touch where I intended, I worked on being able to color inside the lines. That took me a couple of days of steady effort.

After I had regained the ability to color, I practiced drawing the basic shapes (triangles, squares etc). All of this was complicated by the nature of the visual defect - I could not "understand" what was going on directly in the middle of my visual field, i.e. if I looked directly at the shape I was drawing, even though my brain was saying "I'm drawing a square" I would just see a random squiggle. Then if looked at it off-axis (kind of from the corner of my eye) I could see that I was drawing shapes that were slowly becoming increasingly square-like. I could draw something with my eyes closed and it would be a nice square, I could draw it while looking off to the side and it was a nice square, but if I looked right at it while I was drawing there was something not "connecting" in my brain and it came out wrong.

As I would practice these things over and over and over, I would reach a point where there was an almost perceptible "click" as things would lock into place and I recovered the capability. I had to do this with many things that I had never thought about, like writing my name, shaving (try shaving without looking at the razor OUCH), getting food onto my fork, etc. But all of them came back eventually given enough practice.

I was very fortunate to be a good touch typist so I was able to keep working and communicating during the period, writing was very problematic as I found I could not write well even when I didn't look directly at the paper turn. The exam I took that day looked like a child wrote it, but I did well so I can't complain too much, took a certain amount of satisfaction in passing such a thing with a chunk of brain gone, even though I kick myself for being so focused that I didn't realize what had happened to me.

Recovering full reading speed was also pretty quick thanks to the fact that I have always read a bit differently since I was a kid. I read left-to-right, right-to-left in an unbroken scan and somehow it all comes out in the right order, has been this way since I was a kid. By modifying the scan a bit I was soon able to read at full speed and over time the "squiggly area" got smaller and smaller until I no longer noticed it. I don't know if it is gone, or if it is still there and I just "look around it" like the brain handles the blind spots, but it is undetectable by me at this point.

The key to stroke recovery IMHO is to immediately start practicing, practicing, practicing - start with the basics and work toward the fine points of control. Many of the pathways are still there following brain damage but the connections fade fast, it is very much a use-it-or-lose-it scenario.

I also learned that visual processing is a much more abstract function than we think. I had always assumed that when stroke victims were unable to recognize people that they had simply had those particular memories wiped out. Not necessarily true - in my case, looking at someone's face in the direct center of my vision was like seeing a Picasso painting - eyes, lips, nose just kind of randomly floating and not connected. It made me physically ill to look at them, very disorienting for some reason, so I was quite fortunate to be able to see them out of the sides of my vision as normal recognizable faces. If the defect had been larger, I would not have been able to recognize people's faces NOT because I had lost ability to see them or remember them, but because I could not process what a "face" meant. That is an entirely different and much more intractable problem to solve than just rebuilding memories.

My heart goes out to the millions of folks out there who have suffered strokes and been unable to communicate or understand what has happened to them, and for whom there is little conventional therapy available.
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