Crack a chest vs. close a PFO percutaneously- should insurance decide??

Many stroke survivors report they are “waiting in fear for another possible stroke” while insurance companies deny treatment.   This is by far the most common emotion that most stroke survivors share with me while they angrily battle their insurance companies.  Here’s another recent post to know-stroke.org that illustrates this frustration…

Jen writes- “So I am in a very similar boat. Although, I am only 21, and had a ‘stroke’ this summer. Lucky for me the clot that could have been a full blown stroke happened to end up in my eye instead, killing 1/4th of my left eye but leaving my brain alone. They found my PFO 2 weeks later, and were shocked I had never had migraines. Although looking back I always had, but they affected my eyes more than my head so I never thought they were the same thing as the headaches that kept my sister home in the dark all day long. But three months ago (1.5 months after the clot) I started with the every day full fledged migraines. Fun stuff. Anyway, I have been fighting to get my insurance company to cover the closure for over 3 months now. They refused the device closure 3 times, and it looks like I am going to have some sort of surgery, possibly open heart surgery, on the 21st of december (when the semester is over). To tell you the truth, it is absolutely terrifying, and I can’t understand why they won’t pay to put the device in my heart, but would prefer to cut open my breastbone. I am glad to hear your closure did in fact reduce the symptoms.  My worst fear is to have open heart surgery and be laid up for 6 weeks only to still have the headaches and heart palpitations.”

We need to do MORE!

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7 Replies to “Crack a chest vs. close a PFO percutaneously- should insurance decide??”

  1. David-it’s been a few months since we spoke on the phone. You were an incredible help and really helped push me in the right direction. We took a similar path which I find ironic and I’m happy to report things are progressing with my PFO closure. Been up in Boston getting some great care. It’s been a long road waiting for appt., MRI’s, ultrasounds, blood tests. After all the work ups, nothing was ever found. No blood clots, no high cholest., no blood disorders, no clots…my TIA is explainable and the doc’s tell me we’ll never really know what caused my double vision that September morning.
    The only things that can be dedected are the two strokes on the brain MRI report that showed I indeed had two strokes. The first one I wasn’t aware of but thinking back, over the years, I think I narrowed it down.
    Just got word this week that my PFO closure is set for next week. I can’t wait. I’m feeling pretty good since my Sept. stroke but having another is always in the back of my mind. Got two young kids and a lot of life to live and the doc’s seem to think after the closure, I’ll be able to put the last 4 months behind me.
    Still can’t believe I had a stroke. Just doesn’t sound right coming from a 35 year old.
    I’ll update you after the procedure.

    Joe

    1. Hello Joe, happy to read things have worked out for you in Boston. I live in NH and on Feb. 3, 2010 I suffered a stroke. I acted quickly and called 911. After 3 days in the hospital they did a TEE and found I have PFO. My doctor wants me to go to Boston for a consultation. May I ask which Boston Hospital you had your procedure at? So glad I found this info from you, it’s really healpful to others in the same situation. Thank you Joe and keep up the good work getting your message out.
      Sheila

  2. Had my PFO closed two days ago. I’m feeling pretty good. As you all can imagine the actual day was pretty stressful. I didn’t end up having a TEE during the procedure. Actually had two cathetars on each side of the groin. That’s what’s causing the most discomfort as I recover but very barably. I was awake the whole precedure but didn’t feel anything. I’m amazed by the entire procedure. Now for the follow ups. Dr.’s seem pretty confident the repair was a success but as you know, the 6 month Echo tells the story if the hole is 100% closed. I’m feeling good and looking forward to moving on with life.

  3. Joe;
    That’s great!! Once again,thanks for sharing your story. Would you mind commenting on why the second cathetar/both sides of groin were used and …wait…. you remember the whole procedure? WoW! You are the 1st person to report being able to recall the actual procedure. New technique or unique situation?? Would you mind sharing once more for my continued PFO education as well as for my readers. THANKS!

    Rest up my friend (no marathons for you just yet!) I’m sure you are glad to have this behind you.

    Best Regards,
    David Dansereau
    know-stroke.org

    1. 2nd Cathetar was used to guide the device and confirm size of PFo and placement. Rather than do a TEE, they said this 2nd cathetar would be be used instead. Having a TEE prior, I wasn’t going to argue. The numbing solution alone is brutal.
      Since there was no TEE, the meds didn’t have to be as strong. I was able to see the dr feeding the guidewires thru the cathetars if I lifted my head up. This wasn’t too comfortable so I didn’t do it often. I also caught the x ray monitor with the guide wire. I thought it was odd that I was able to see all this stuff as I expected to be out cold. I told the dr. but he didn’t seem to be concerned. The good thing and most important was that I felt very little. I felt the pricks for the numbing meds for the cathetars and nothing else.

    2. The 2nd Cathetar was used in place of the TEE. I know…I was a bit suprised about this method as well. Meant I didn’t have to have a full dose of meds, which I’m guessing why I wasn’t totally knocked out.

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