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PFO -- hole in the heart

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    PFO -- hole in the heart

    Caveat: I'm not a medical doctor!

    Although this isn't directly related to MS, I thought it worth posting as our experience was PFO symptoms can look like MS. Conversely, if you have MS there is a chance you could have something due to a PFO that is incorrectly being attributed to MS.

    A PFO is a flap in your heart that lets blood leak across the heart, bypassing the lungs. Everyone is born with one, as this lets the mom breathe for her fetus. If the flap doesn't grow closed, blood clots can cross the heart and cause problems. An Atrial Septal Aneurysm is the same thing, but the hole is always open. Many people have a small PFO with no problems.

    My wife had many MS-like symptoms: Vision loss event, dizziness, fatigue, a larger than normal number of brain lesions, and more. One of our doctors suggested a test for MS. From our online research my wife was convinced she had MS. Thankfully it wasn't MS, but she still had bad symptoms that were occurring more and more frequently. Finally one of the doctors suggested a test for PFO (hole in the heart).

    The test is simple, you get injected with many small air bubbles I think into veins, and they look for them in arteries (meaning they crossed the heart directly rather than going through the lungs as they should). My wife had a top of the scale number, even at rest, indicating an Atrial Septal Aneurysm (hole that is always open). The test and her symptoms indicated a repair was in order.

    The fix was just to put a yo-yo shaped plug into the hole via a catheter. It was a an out-patient procedure, about 1 hour for the procedure and about 3 hours where they watch you. She had to take blood thinners for about 6 months and was to avoid hard exertion for about 2 months.

    Wow, what a difference!
    • Slept 10 hours a night and woke up tired. Almost always in bed at 10 p.m.. Now sleeps 8 hours a night, goes to bed as late as midnight, and wakes up ready to go after 8 hours even with no alarm.
    • Brain fog: Says she feels she is thinking more clearly.
    • Dizziness: Drove as little as possible before, now drives without fear.
    • Weight: She had slipped from a healthy weight range to about 10 lbs below the bottom of healthy weight range (that's bad for osteoporosis, which she has). She has gained about 10 lbs since the PFO closure to just hit the bottom of the healthy weight range. If she gains about 10 more pounds she'll be in the middle of her healthy weight range, which I think would be a good goal. She definitely has a better appetite.
    • She looks so healthy and vibrant now and smiles more.
    • She had her first migraine ever two nights before the procedure. It was pretty bad, bed bound with the curtains closed and crying for hours. Thankfully here has been no recurrence.
    • She had a single loss of vision event that corrected itself in a few hours. So far there has been no recurrence.

    We believe her issues were due to small blood clots. Unfortunately some of the damage is permanent:
    • Hearing loss
    • More prone to motion sickness -- doesn't like skiing, car racing, or motion rides any more
    • Shortly before the operation she possibly had a mild heart attack symptoms (felt weird and numb left arm), and has had some chest pains since.
    • Even with the PFO closure, as a separate issue she could also be prone to blood clots.

    I feel we dodged a bullet by getting this figured out and fixed, and am glad it was so successful for us.

    Thanks for sharing

    Thanks for sharing your story. My husband has a PFO. I have noticed a lot of his symptoms are similar to my symptoms. So it has made me wonder if I have a PFO myself. Perhaps I'll ask my PCP on my next visit. Thanks again for sharing!
    Be Blessed
    DX'D RRMS in 1994 started Copaxone in 2007


      Good description of PFO (Patent Foromane Ovale)

      Having spent most of my life as a Cardiology nurse (CCU, Cath Lab, Echo Lab, Research) I was immediately drawn to your post. I wanted to add that the air-bubble test is done during an Echocardiogram (non invasive "sonogram" test of the heart). I wouldn't want people to dismiss MS or a Heart Attack thinking that they have a PFO, so I wanted to say to everyone = PLEASE PLEASE get medical help IMMEDIATELY:
      1. if you have chest pain
      2. pain in left arm/jaw
      3. feel you may pass out.
      Peace to all,
      RRMS 11/11/2005, SPMS 20011 (guess I 'graduated')