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After 2 bubble eco's my large PFO is still not fully sealed

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Posted 11/10/2008 8:34 PM (GMT 0)

Hi, in May 2008 I had a large PFO closure, 22mm....The PFO was discovered because I am a scuba diver and noticed that I was getting some chest pain and blue lips, also very clumsy.  When I had the operation I could not believe how painful it was, it took about a month before I felt okay again....Then 2 months after I started to get chest pains again, sharp pain.  The doctor put me on beta blockers as well as the plavex and aspirin I am already on.  I had my 1st eco bubble test in July and was told the procedure had not been 100% successful; it closes at rest but not under exercise.  I have just been to my second eco bubble test and same problem, still not 100% successful....I now have pains in my legs and still get some chest pains, not as bad since being on the beta blockers.  I am seeing my surgeon next week to find out more and what’s next for me.....Has anyone else been through a similar experience?

 

Good points, no more migraines and not so clumsy....plus my complexion is much better....

KP

Posted 11/12/2008 4:07 AM (GMT 0)
Hi KP,

I had a closure several months ago and experienced a good deal of chest pain which seemed to surprise the nurse documenting my case. My PFO was not nearly as large as yours. I still have some chest discomfort when I work out and my heart rate can get surprisingly high. I could hardly bend over the first eight weeks, but it is now better. I have not had any pain in my legs at all. My lips are no longer blue and I haven't had a single migraine since the procedure. Your description of pain is concerning. Have you had a normal ECG? I have noticed some arrhythmia, but I am hoping this clears up in a matter of time. I have heard they can place a second device to seal the first if it won't erode any structures. What kind of device was used the first time?

Liz
Posted 11/12/2008 9:12 AM (GMT 0)
Hi Liz

Thanks for the reply.

I thought i would be ok by now. and its interesting they think chest pain strange.

I now have a appontment to see cardiolagist again next week so will see what he say's. I am very disaponted it has not fully worked as yet will keep you posted on what he says

cheers

kp

Posted 11/13/2008 2:11 PM (GMT 0)
Hi s2k,

I had my PFO closure done on April 28th. It was a large one as well. I just had my 6 month echo with bubble study done 2 weeks ago and my hole is still open although significantly less than what it used to be. I had a great echo technician and she warned me upfront that I probably would still have some leakage. She said that it is very rare that she sees a totally closed PFO after only 6 months and that it usually takes a good year for enough scar tissue to form to totally close the hole. Sure enough I still had bubbles going through even at rest. My cardiologist confirmed what the technician said, that it can take a good year for complete closure. So I'm still on the Plavix and will be retested again in a few months.

I have to say that my closure procedure was very painful as well. My veins are very small and they had a rough and painful time getting the camera and device up my veins. Then when they were seating the device I had pain the entire time. They even had to stop the procedure because I was having vasal vagal problems. It was not fun. Three weeks after the procedure I devloped non stop PACs which landed me back in the hospital. It took 5 months before those finally went away. It took me a good 6 months before I finally felt really good. The good news is that I haven't had a migraine since the procedure, I used to be icy cold even at 75 - 80 degrees outside. My feet, hands and nose would be icicles. Now I am warm all the time. It's so unusual to feel that way.

Posted 11/13/2008 2:25 PM (GMT 0)
Catmom,

I think I had a similar experience with the small veins, but I was heavily sedated so I don't remember anything. The procedure took twice as long as it was supposed to so I know there was some issue. I had a bruise from my mid-thigh up to my belly button and was extremely sore on the top of my abdominal muscles for the first two months. I still have the remnants of the thigh bruise five months later. I haven't had a follow-up bubble study yet, but I am amazed at how the color returned to my fingers and toes. I am much warmer and have had no migraines at all. I think I am having SVTs when my heart rate suddenly jumps up above 250 bpm, but it stops quickly and I have no desire to take more drugs so I am hopeful this will resolve with time. It was all worth it to end the migraines.

Liz
Posted 11/13/2008 2:35 PM (GMT 0)
Hiya
Migrains Mine stoped although i still get some headaches due to medication im on.
I still now bruise very easy. still on plavix will be interested to see what they say next week .
But i must say no migrains rule
kp
Posted 11/13/2008 2:45 PM (GMT 0)
Have you been diving since? I am an avid diver and haven't been since the procedure. I used to dive well under table limits and would still get a little loopy at the end of dives so I am hoping this has improved. I , too, had many bruises from Plavix and then discovered my liver enzymes were 33x the normal range. I was diagnosed with hepatitis presumably due to Plavix and taken off it six weeks after the procedure. I am now off all drugs and feeling much, much better. As for your chest pain, can you tell if your heart is also racing? I found that my pulse was 150 or higher every time my chest hurt. I had never really noticed until a trainer at my gym suggested wearing a heart rate monitor for a while. When the pain is th worst you can't even find a pulse in my wrists, but the veins in my neck visibly pulsate. Very strange. The pain in the legs is a mystery.
Posted 11/13/2008 2:55 PM (GMT 0)
Hiya
I have dived but only in warm water dr limeted me to 30 meters on nitrox only for now
I have been diving in swim pool
I must say my fitness is well down now.
my pulse did race for long time after but seems to have setteld
i do seem to be on loads medication still
leg pain not nice
KP
Posted 11/13/2008 9:04 PM (GMT 0)
Hi Liz, other point aboout the diving, this is my vocation so no diving isn't an option. My surgeon advised no cold water for at least 1 year to 18 months, warm water only. In all my years of divings and I have done many dives in South Africa, head first dives in strong currents. I was also at one point training for the deep air diving record for woman (max depth 90m on 21% mix, deepest dive on tri mix 128 m), unreal when you think about that bloody massive hole in my heart. In all the years I have been diving (20 plus) I have only ever had mild skin bends.....

So really I am sure you'll be diving again soon, I have already as i said earlier, I felt great getting back in.

If you need more info just ask..

KP
Posted 11/18/2008 8:53 PM (GMT 0)
 

Well got to now have camera down throat and looks like another op on way.

but will be good to get sorted once and for all

kp

Posted 11/18/2008 8:56 PM (GMT 0)
Bummer about the TEE. Hoping you can avoid open heart ...
Posted 11/18/2008 9:04 PM (GMT 0)
Thank Cogal
yes bit of a bummer will know soon
kp
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