About this blog/My PFO Story

At age 39 I had a stroke without any known risk factors, except for a “silent” heart defect that you might want to know about…

David Dansereau, Stroke Survivor (founder of know-stroke.org)david dansereau and tedy's team

David Dansereau
David Dansereau (Know-Stroke.org)

About David Dansereau

Iam a health professional with a private physical therapy practice in Rhode Island. I made my first post to this blog at the end of 2006. At the time of this first post, I was experiencing delays in medical care and uncertainty about my stroke/PFO diagnosis and proposed treatment. My first post and the creation of this blog was a way of outlining my medical history and trying to perhaps vent/keep my sanity during a difficult time in my life. My goal in building upon this blog later became to launch an awareness campaign to help better understand the causes of crypotogenic stroke and the connection between PFO/the heart and brain. My own experiences and uncertain medical course inspired me to take action.

Quick Background:

I had a stroke without warning or having typical stroke risk factors.   After months of testing it was revealed that the cause of my stroke was from a previously undiagnosed heart defect called a PFO (patent-foramen-ovale). Read my full story here

Progress / Update:

I continue to work towards an “Oprah moment” to improve screening and patient education for PFO and stroke awareness.   Recently, this goal took a giant step forward with the hard work of a great team of patient advocates.   I’ve been serving  as Vice President with helping launch a patient driven initiative, the PFO Research Foundation.
The PFO Research Foundation seeks to educate the public about patent foramen ovale (PFO) and support research into the condition’s related disorder with the goal of improving patient care by ensuring patients have access to the latest scientific information related to PFO and research into the condition is well funded. The PFO Research Foundation (PRF) was formed by patients for patients and is supported by leading experts in the field of PFO medicine.
For the latest update on this initiative please register for my webinar:
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We need your help

If you have a similar stroke story to share or especially if you know someone with frequent unexplained migraines with aura please share this information with them.  I hope to develop this blog into a resource for better understanding on this subject.   I continue to need your help to progress this mission of better education for PFO.    Several readers have also posted similar stories and still many others have called me by phone for support and to share their stories in confidence. Please follow this link to read other survivors stories or share your own   Continue to follow along on this page for  examples of survivors stories beginning below or go to my webinar registration page to get the latest update on my story and my new goals for 2014 and beyond for stroke awareness and recovery resources.
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13 Replies to “About this blog/My PFO Story”

  1. Hello,
    I found your story and it struck me so profoundly that we are so very much alike in our case history.

    I am 38 with three children and husband good shape, non- smoker, BP of 98 / 68 decent cholesterol and had a TIA / Small Cryptogenic Stroke in Oct. 2007. My history of migrane with aura goes back many years and two years prior had an “event” that sent me to the emergency room only to be told that I took a medication too close together and and was sent home with no further testing. 6 months later after telling my physician about recent unexplained panic attacks that I was having before falling asleep , episodes of vertigo, aura without migraine and numbness in the back of my head, I was sent for an MRI / MRA which showed an infarct or small “white” spot. I went to the Cleveland Clinic for testing for MS and was told that most likely that my symptoms were Migrane related , the spot she was “unimpressed” with and felt that it could have been there since birth and the other symptoms were for lack of words “in my head”. Very frustrating. Life goes on.

    This leads up to Oct. I was coming back from a business trip with a friend (thankfully she was driving) and my right side started to go numb. It started with my face including my eye and tounge and radiated into my arm and leg. It stunned me at first and I thought I had pinched something and began to slap my face and arm and jerk at my leg trying to get the feeling to come back. It seemed to only last a few minutes and started to go away . By then , I felt that the likelyhood of a panic attack were good so I popped an ativan and took an excedren migrain tab which I had in my purse. Since my vision seemed blurred ( not like the aura) but I was hoping it was a migrane related incident. After some time passed I tried to make light of it and saw a Dr. the next day. I had an MRI / MRA which in fact showed the TIA. The Radiologist was even able to tell me that it was within the last three days not knowing when I had the event. Two days later I had reisdual arm weakness and became very upset and landed in the emergency room. Was sent via ambulance to UPMC to rule out another event and from there I had numerous blood draws for clotting disorders etc another MRA, an Echo all showing nothing but the previous event that week, which was a relief. I was put on Aggrenox which made me horribly sick for about a week. It was awful but I knew I had to take it until they figured out what was going on. It was when I had the TEE the PFO was discovered. My cardiologist felt very strongly that it was in fact the culprit. At this time I had been seeing a Neruo at UPMC in Pittsburgh and he discussed with me that there was a Cardiologist at the hospital in connection with him that was taking part in a PFO / Stroke / Migraine with Aura study and the Starflex closure device. I went to see him and after discussing all my options I rolled the dice and joined the study and was dealt the card to rec’ the closure device. I went in just on Valentine’s day for my surgery and during the proceedure they discovered that I also had an ASA ( atrial septal aneurysm) next to the PFO that they repaired at the same time. The surgery went very well, the staff was wonderful and I am feeling great other than the fact that I threw my back out 3 days after due to not putting much weight on the leg that the surgery was done on and bent down to pick something up and presto! Muscle spasm for 3 days.

    I am feeling so blessed and fortunate by having the small signs that led to the surgery since so many others were not so fortunate. Other that thinking that I am a little forgetfull once in a while I do not have residual effects and cannot wait until I can get back “normal” soon. I am very positive and am a huge Oprah fan and saw that you had some ah ha moments from her show. I too have had this same feeling and am currently reading the New Earth Book and look forward to making some really positive changes in my life and living to the fullest . There was a fellow Cardiologist at my local Heart Dr. that was the same exact age as us whom did not fair so well and is relearning to walk and talk and will most likely never practice medicine again, I think this is why he felt so strongly that the PFO was the cause and wanted me to get it closed right away. My mother also knows a young man , I believe mid thirties also that had a major stroke at the dinner table with his wife and children watching and he told her that he had migranes with aura since he was very young.
    I think there is a huge connection with this and I think that it is equally puzzling that so many are in our age group.
    It was wonderful to read about your story and hope that by sharing mine you may gain something from it.

    Sincerely,
    Melissa

  2. Hi Melissa;
    Your story is so amazingly similar to mine. I appreciate you taking the time to share the details of your journey especially the time line on how you arrived at being able to close your PFO. Many individuals have called me “off the record”after reading my story and were told their best possible option for closure was to enroll in a similar study to the one you mentioned. The general feeling is that these individuals do not want to enroll because they want to get their heart defect repaired and not have to live with “Not knowing”. It is to that end that I stay motivated to help advance the education and recognition /screening for PFO/ASD. Each time I hear a story like yours my commitment is strengthened. Thank you. EVERY time I hear of a case where the results were not so good, like the examples you shared, I get angry that perhaps more could be done.
    I just learned a short while ago of a high school boy in my area that went into his basement to lift weight and later was found dead. It was determined the cause of death was he had an undiagnosed PFO. I know that could have been me. and that is why I feel the most compelling point you shared in your story is when you described feeling blessed and fortunate and having the small signs that alerted you something was not right. Those signs and your outcome happened for a reason, in my opinion, as they did in my case. I hope I can count on you to help with this cause in the future. For now, sharing your story was a big help. Best wishes in your recovery, David

  3. I am 41 years old, in great shape, no past medical problems. I have had migranes with aura since I was 12 or 13 yrs. old. I got up last Thurs. morning to go to the gym and quickly realized something was not quite right. I was having numbness in my right hand, arm, leg. My husband convinced me to go to ER. After tests were done it was determined I had a left brain stroke, affecting my right side. After doing tests to rule out clogged arterties, etc….my neurologist recommended a TEE to see if it could be my heart. They found the PFO and also a very weak membrane between chambers. I had the procedure the next day that repaired the hole and floppy membrane. I am very lucky to have no impairments from the stroke. I doctor said that when it entered my brain it shattered into tiny pieces instead of one big glob. This is a good thing. I am now feeling better than new and have not a even a slight headache. The doctor said I can resume activity, even working out, when the incisions in my legs heal, which they are healed now. I have been a little nervous about resuming excercise????? I am on Plavix and aspirin.

  4. Hello,
    I just found this site today,(this will lead to another story).
    I too have a PFO story. To begin let me say that my mother says that I have complained with headaches since age 5.
    At age 51 I had a hysterectomy. Seven days later I had a stroke. After test I was told that they found I had a PFO that allowed a blood clot from my surgery to my brain.
    My Cardiologist said I should get it repaired but after seeing 3 other cardiologist in Houston,Texas I was told there was an FDA hold on the surgery, but that I could be in a study The Star-flex closure study . I was randomized to the take medication part (coumidan). After 3 years I am told the study still has at least another year or 2 till completion. They say no surgeries are being preformed at this time.
    But I heard that Bret Michaels is going to have the surgery, Is that because he is famous or are my doctors misinformed. I am so confused

    1. Carol;
      I’ve shared your confusion and I know it can be SO frustrating. We are making progress with a bit better awareness for the need to better screen for PFO, but how to best treat, well that is still the big issue. I’ll point you to several resources if you haven’t already linked to them from my blog:

      Here’s a link to the PFO Research Foundation, a newly formed patient resource I am involved with to help improve patient care. The PFO Research Foundation (PRF) was formed by patients for patients and is supported by leading experts in the field of PFO medicine.
      You may also be helped by sharing your story on the facebook link to our PFO Research Foundation Group

  5. I am a 49 year old white female that has suffered from migraines for many years that had grown increasingly worse over the last few years, I also had vague cardiac issues that never had a medical explanation. I have literally spent years trying to get help from many Neurologists and Headache Clinics. I was always told I had ‘classic migraines’. I had reached the point that I was desperate for help. A family member saw a documentary on PFO and migraines. I went to my physician and was told Cleveland Clinic had information on their website about PFO. He sent me to have a TEE done and it was confirmed that after years of dibilitating migraines and cardiac episodes that this was likely the explanation for all my symptoms. I also had an atrial septal aneurysm. I was scheduled for outpatient surgery and had the procedure done 9/29/09. I have not had a single migraine episode since then! I am back to living my life to the fullest. I sent my testimony in to the staff at AGA Medical because I had an Amplatzer device implanted, but they said they were unable to publish my story due to the legalities of the FDA and the fact that I had not suffered a full blown stroke. My Cardiologist said that it was a miracle I had not already had a stroke. I am very thankful for finding the cause of my problems but it is also very frustrating at how much time and money was wasted in my search for help. I want to make other other migraine sufferers aware that it is a possibility that PFO or ASD can be the cause of their pain and symptoms.

  6. I am a a 28 year old male very fit, active and healthy, non smoker seldom drinker healthy eater etc. So it came as a big shock to me when I was diagnosed as having a stroke 11 weeks ago. It started with tinnitus in my left ear ear followed quickly by a loss of power over my entire body and my loss of speech. I eventually slurred out the words to my family that I thought I was having a stroke. An ambulance arrived quickly which brought me to my nearby A&E whereby they told me I was most likely suffering from migraine and not to worry. It was not until a whole day later that I had a ct scan done quickly followed by an mri that they discovered I had suffered a substantial stroke. Needless to say I was at a loss upon hearing such news. Numerous tests were carried out to determine the cause of my stroke such as blood tests, cardio echo diagrams until they eventually found I had a tiny PFO in my heart with a scope test. My neurologist is now telling me after having consulted with a cardiologist that they do not recommend I get the hole fixed as it is so small. This diagnosis is not sitting well with me as they think my PFO is not linked to my stroke but as I am only 28 very fit and healthy with good cholesterol levels etc. that my PFO has to be linked to my stroke. How many 28 year olds have strokes who also have PFO. I have not had a second opinion yet as money is a bit of an issue but I really don’t know how to go about this. Should I consider getting my PFO closed and what are the risks of doing so. I’m so young I do not want to be living the rest of my life in fear of over exerting myself in case I get another stroke. I love my sports and nothing better than a good surf so these things worry me.

    1. Hi Peter;
      Thanks for posting on Know-Stroke.org. PLs. check our patient education resource for PFO at http://www.pforesearch.org You”ll find a link to our patient group on Facebook where you’ll be able to find support and I’m sure you’ll be able to get many of your questions answered. ALso pls see the link on clinical trials on our patient website to call for more information on a center near you. Keep me posted on your progress and pls connect here as well if you have more questions.
      Best Regards,
      David Dansereau
      Know-stroke.org

  7. Dear David,
    I read your inspiring and touching story and many of the stories that followed with intense interest. I have been diagnosed with a PFO because my oxygen has been dropping extremely low. Luckily, it is prior to a stroke. My problem, however, is getting my PFO surgically repaired BEFORE I have a stroke. My internists and my pulmonary specialists are adamant that I need intervention surgery to repair my hole, but not all surgeons are of the same mindset. Do you have any suggestions where I should go to seek the best care and physicians that would be responsive to my problem?

    1. Hi Norma;
      Thanks for finding my blog and taking the time to leave your comments. Curious, have you tried our PFO patient group on Facebook? Here’s the link:
      http://www.facebook.com/groups/106434738635/
      I’d suggest you post your question and area where you live. The group is supportive and experienced, they’d be the best resource I could provide for a best referral in your community. Pls. keep me posted here or friend me on FB and remind me when you do, I’d like to welcome you to the group if you join us!

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