Updates from October, 2010 Toggle Comment Threads | Keyboard Shortcuts

  • David Dansereau 2:25 pm on October 19, 2011 Permalink | Reply
    Tags: , , gore medical, , nmt medical, ,   

    Gore Medical Products Division Purchases Closure 1 Data from NMT Medical 

     

    The purchase of  this stroke and PFO (patent foramen ovale) data from Closure 1 as well as intellectual property is reported to be ” in the spirit of collaboration and in the interest of advancing scientific and medical understanding”.

    posted by David Dansereau for know-stroke.org


    FLAGSTAFF, Ariz., Oct 19, 2011 (BUSINESS WIRE) — W. L. Gore & Associates (Gore) today announced that the Company has purchased the assets and intellectual property of NMT Medical, Inc., including the data related to CLOSURE I, a prospective, multi-center, randomized controlled trial of PFO closure with the STARFLEX(R) Device (NMT Medical, Inc.) versus best medical therapy for the prevention of recurrent stroke and/or transient ischemic attack (TIA) in patients with cryptogenic stroke/TIA and PFO….read full press release

     
  • David Dansereau 4:00 pm on September 21, 2011 Permalink | Reply
    Tags: , , patient guide for PFO, patient registry for PFO septal occluders, , pfo device erosion,   

    PFO, patient identification cards and fish tanks? 

    Sometimes when you speak the truth it can get you in trouble.   Let me explain.  I’ve been digging a little deeper lately trying to get some answers to the ongoing question of  PFO, septal occluders and exercise.  Completely for my own benefit of course,  but if you have been following my posts you know I am not the only stroke survivor with a septal occluder patent that is googling for help.  Let’s just say for now, I am thinking of boosting my exercise level and need to know if it still “OK” especially with recent rumblings of device erosion.   Anyway, you may be thinking I shouldn’t need to google for help, right?

    The answer as it turns out is not that easy.  I have this patient identification card that identifies me as an official recipient of a septal occluder married now to my ticker.  With my card  I received a one page letter that states  “Dear Recipient:” (that’s me)

    Enclosed please find your xxxxxx Occluder implant registration card.  Please keep this card with you at all times.  This card will notify medical staff of your implant in case of  medical emergency, and provides a contact number for us to reach you in case additional information might be needed for your care.  Below are some commonly asked questions about your device:

    (skipping to the part on exercise or as close to the part that mentions any physical activity guidelines)

    Q: What activities should be avoided after my procedure?  When can they resume?

    A:  All strenuous activity should be avoided for one month after the procedure.  Even though you may feel ready to resume your normal activity, you should take it easy for at least one month.

    I needed more information so I called the toll free number on my PFO Patient Identification Card.  What I quickly learned was “they (the device manufacturer) don’t set the guidelines, they just make the device”.  I would need to “speak with my physician who implanted the device”.  Honestly, I am not feeling comforted by the device support line these days especially after reading more about PFO device erosion.    I am suppose to feel better after speaking with my physician and having a long discussion about erosion that I have a “good” device.  Frankly, I don’t know what that really means because there is clearly  an accountability problem that needs to be addressed.

    Bray Patrick Lake of the PFO Research Foundation posted a great article on better accountability in this industry.   I hope we figure this thing out soon, I don’t want to get a call  “in case any additional information is needed for my care” just because I want to be more active.  I’ll tell you soon how this truth might be getting me in trouble  but for now read Bray’s article on why her fish tank/water heater may be currently better regulated than the individual devices that she and this author have patent.  That’s a shame.

    David P. Dansereau for know-stroke.org

    David Dansereau at Know-Stroke.org

     
    • Marcia 4:10 pm on September 21, 2011 Permalink | Reply

      David!!!!!! OMG!!!!!!! Keep us all posted! xo you!

    • Beth 5:28 pm on October 11, 2011 Permalink | Reply

      I read Bray’s post a while ago in the group on Facebook, and made a *mental note* to immediately schedule an appt. with my cardiologist who preformed my surgery for an over due follow up visit. The metal note to myself failed, as I’ve been dealing with other health issues. Now I have my written note reminder as I shall be in his office tomorrow for an appt. with my electrophysiologist & neurologist in the same office. Glad I found your blog as a reminder, and looking forward to reading your past posts.

  • David Dansereau 11:08 am on September 20, 2011 Permalink | Reply
    Tags: , , , stroke suvivor   

    PFO and Cryptogenic Stroke:Another Runner Shares his Story 

    Following this story
    Medical Mystery : The Runner who lost his voice
    http://www.nationalpost.com/m/blog.html?b=life.nationalpost.com/2011/09/20/medical-mystery-the-runner-who-lost-his-voice&s=Opinion

     
  • David Dansereau 4:08 pm on August 15, 2011 Permalink | Reply
    Tags: , , , , Migraine and PFO treatment, , , PFO Patient Care options, ,   

    Flip Flops, Groin Kicks and Physicians without Heart have no place in PFO Patient Care

    By David Dansereau,MSPT

    I admit, I’ve needed a boost to get back to my know-stroke blog after almost a month away from posting.  You see, I’ve been working hard at expanding my physical therapy business recently but have never lost sight of my goal for this blog and/or for the larger vision of  our non-profit group the PFO Research Foundation, for which I currently serve as Vice President.  It took several recent impactful posts by PFO patients on my blog who shared their stories recently here to get me going again.  I’m not going to say it took a groin kick because this is the exact statement a physician made at our 2011 PFO Summit in Boston last month that has left me short on words until this post.  The recent patient stories I reference you can find here: See Christine’s and Stephanie’s recent posts.  They both highlight the continued need for better patient education for PFO/stroke/migraine.  As I read their stories I had a flashback to our PFO Summit and to the physician who will remain unnamed.
    This physician addressed a roomful of medical professionals and a handful of patients as he spoke at conference about PFO and migraine.  In his presentation he proceeded to describe what advice he would suggest if a friend asked if he should consider PFO closure as an option for managing migraines.  I am paraphrasing because I haven’t yet been given the opportunity to review the replay of the conference, but his advice is stuck in my brain because it was so out of character and inappropriate.  Implying that the patient would be better off “getting kicked in the groin” than having a PFO closed percutaneously is ridiculous, and perhaps riduculous is just the angle this doc was going for, but that was his advice and I infer his medical opinion of PFO closure. Perhaps too, medical advice like this is also exactly why patients like Christine  and Stephanie and many more in our patient group need to have their stories told to demonstrate the need for better, much better care from the medical community.
    My advice to physicians-Stop flip flopping, as many of your colleagues are currently doing when it comes to  deciding how to best treat PFO.  I hope someone from conference will step up and address the flip flop issue here (please comment below).
    My advice to patients- Ask questions,get references,research and list your pros and cons, ask more questions,even if you know the answers may be potentially ugly and by all means get involved to make a difference.  Inquire and learn all there is to know about clinical trials and the device options vs medical management,then once all this work has been completed sleep on it until your gut feels at rest and your heart will then be ready to do the heavy lifting ahead.

    Oh, and speaking of heart, Christine  said it best at the end of her recent post,

    Always keep an open mind, and even more importantly, an open heart.”
     
  • David Dansereau 12:45 pm on June 20, 2011 Permalink | Reply
    Tags: , , Liz Bestic, , , , Stoke and PFO research,   

    “You Have Had a Stroke”-What to do next? 

    Yes, I admit, my posts these days on my stroke blog have been few and far between.  I have been extremely busy (more on this shortly) but  I had to comment on this story right away before I bookmarked it and  it got eventually lost in a sea of other things  “to do”.

    Liz Bestic, a health reporter in the U.K. recently heard the words “You have Had a Stroke” .  I would otherwise have no reason to know this other than Google Alerts gives me a poke every time the words PFO (patent foramen ovale) and exercise (as well as a few other PFO/stroke combinations I follow) appear in the news and shortly thereafter in my email.  Mostly these days I don’t get through all the alerts but “PFO Exercise Guidelines” still are tops on my radar because it is an area where much uncertainty remains and physician/patient  EDUCATION still is lacking or non-existent depending upon who you ask.

    Liz Bestic reveals in her great article about her stroke and  PFO diagnosis that she is exercising while she ponders a difficult decision on what to do next.  While this was the last interesting point made in her article and is what probably triggered the PFO/exercise/Google  “link” that now has me linking her to my blog I hope it isn’t the last on this important theme.  I do wish Miss Bestic well in her recovery and on her decision on how to best treat her PFO.  I also hope it may happen that she will find it timely to perhaps do another follow-up story as she now will no-doubt become an expert on the same PFO/stroke  journey many of us have already taken.   Miss Bestic may in fact be in a unique position as a survivor and health reporter to help improve this education gap. Who knows, perhaps Google may be able to help with this important alert too.  I welcome all your comments, and especially those of Miss Bestic if she happens to have her own name “tagged” and finds us here.

    Here’s the link to her article and it is worth the read right away, don’t just bookmark it “for later” :)

    David Dansereau for know-stroke.org

    David Dansereau at Know-Stroke.org

     
  • David Dansereau 12:27 am on November 2, 2010 Permalink | Reply
    Tags: color of stroke awareness, , , , , stroke advocacy and recovery   

    Does Stroke Awareness need a Better Color or a Better Sponsor?? 

    October just wrapped up Breast Cancer Awareness Month, and you could easily find its signature pink color practically everywhere you turned.  Here’s only a few examples of where I spotted the pink ribbons and the pink theme this past month.  Cereal boxes, soup, popcorn and probably a dozen other items I could list if I looked more carefully in our family’s food pantry.  Then there was the pink invasion in pro sports and in the media as well.

    Tom Brady

    Just about every football players in any Sunday NFL game you turned on TV as well as many baseball players in the MLB playoffs were all touting pink shoelaces and gloves.

    If the color pink wasn’t found on the field, then they undoubtedly had a special hat made up with their team logo accented in pink or wore the “classic” pink ribbon pin during a key press moment either pre or post game.  It had almost seemed as if you didn’t join the “in” crowd and wear a pink ribbon on whatever you’re wearing, you’d be left out as not supporting breast cancer awareness.

    This is all a good thing, I can’t stress this enough.  Breast Cancer Awareness is “on the ball” getting their message out BIG TIME and only gaining momentum year after year.

    Hmmm….  How are they doing it and how can stroke awareness go BIG TIME too ?

    I researched the origins of the pink awareness effort for breast cancer because I wanted to try to model their success to gain better awareness for stroke.  As you know if you are reading this from my blog (know-stroke.org) I am  particularly interested in gaining better stroke awareness for the young faces of stroke ( pediatric stroke awareness ) as well as when stroke presents itself in the case of  a PFO (Patent Foramen Ovale).  These are both areas where there is so much more work to be done and where I have been trying to make a difference.   While I’ve been told I have already made an impact through my volunteer efforts, I can’t help temper my frustration when I hear about another young stroke victim that didn’t get immediate attention because his coach didn’t recognize the stroke warning signs.  I get an equal measure of discouragement when our non-profit group, the PFO Research Foundation struggles to gain new sponsors to further fund our cause for better PFO patient education.

    The Big Sponsor that helped Breast Cancer Awareness go BIG TIME

    My research showed that Breast Cancer Awareness Month (October) is now 26 years old.  I also discovered the color pink is a Big Pharma-funded effort, it was launched by pharmaceutical giant AstraZeneca.  There also is some controversy regarding the pink campaign and if it is actually helping Big Pharma boost its bottom line and sell the company’s cancer drugs through improved screening and faster treatment delivery.  Either way, it’s been a wildly successful awareness campaign for breast cancer and it appears obvious its presence has inspired many.

    My case for better stroke colors or a BIG TIME Sponsor

    In the midst of all the pink in October, did you know October 29th was World Stroke Day? I bet if I asked ten people that question, not a single person could tell me that date or its significance.   Indeed, a WORLWIDE Stroke Day for awareness and I could not even get my local paper in town, The Valley Breeze, to print a public service announcement to inform readers of the stroke warning signs (here’s my post on this topic).  I was told by the editor, Tom Ward, that there simply was not enough room to honor my request because there were too many political ads to print prior to the Nov 2nd general elections.   I received this information ahead of the paper’s release this past week and while I was not expecting to see my stroke PSA in print I honestly also wasn’t expecting to see the front page and a second page (p.29) in the paper both showing pictures of a pink fire truck that came to our town to promote breast cancer awareness.  As I mention in the title of this post, I think I may be on to something, because I think our stroke colors may be all wrong.  My theory:  Would better colors, or brand awareness, attract more attention to the stroke awareness cause?  Unfortunately, I believe it is more complicated than simply having the wrong colors.

    The issue of stroke survivorship (and media coverage) often takes a different path when compared to the successful cancer awareness efforts.  I’d even suggest the color might not matter, just for argument, think yellow wrist bracelet and what do you think of, Lance Armstrong/Livestrong/Cancer.   I think for a good explanation of why stroke awareness just doesn’t “pack a punch” in the media you should read a recent article in the Baltimore Sun by Kris Appel.  The article is entitled, “Bringing Stroke Out of the Shadows” and it discusses how shame and lack of attention still surround this disease.  This is a great article both for stroke survivors and the general public.  Miss Appel’s article ends with “But until we become comfortable with the idea of stroke and are willing to talk about it, to acknowledge its toll on this country, it will remain in the dark”.  How fitting, right now I believe our stroke color needs to change, because you can’t see color in the dark.

    [Personal Sidebar] To end my week full of color, I guess you could say, take one guess what color my daughter picked out to have (me) paint her room this past weekend?  You guessed it, pink.

    photo by David Dansereau for know-stroke.org

    Article by David Dansereau

    know-stroke.org

    David Dansereau

    David Dansereau (Know-Stroke.org)

     
  • David Dansereau 12:44 am on October 23, 2010 Permalink | Reply
    Tags: aha/asa guidelines for recurrent stroke, , , ,   

    New AHA/ASA Recurrent Stroke Prevention Guidelines Released 

    The American Heart Association and American Stroke Association published updated guidelines for recurrent stroke prevention online Oct. 21,2010 in the journal Stroke.  The last update to the AHA/ASA was in 2006, but results from several studies testing different interventions contributed to the need for the new report.  “We need to reevaluate the science every few years to optimize prevention,” stated Dr. Karen L. Furie, chair of the 18-member writing committee and director of the stroke service at Massachusetts General Hospital, Boston, MA in a statement accompanying the updated guidelines.

    New recommendations in the guidelines cover control of risk factors, interventions for atherosclerotic disease, antithrombotic therapies for cardioembolism, and use of antiplatelet drugs for noncardioembolic stroke.

    What did the new guidelines have to say about patent foramen ovale (PFO)?

    According to the report, “evidence is also insufficient to establish whether anticoagulation therapy is better than aspirin therapy for secondary stroke prevention in patients who have a patent foramen ovale.”

    The full report can be accessed at the American Heart Association and American Stroke Association website.

     update by David Dansereau for know-stroke.org
    New AHA/ASA Recurrent Stroke Prevention Guidelines Released
     
  • David Dansereau 5:14 pm on October 15, 2010 Permalink | Reply
    Tags: Brett Michaels, , , patent foramen ovale and Brett Michaels, , ,   

    Will VH1 show Bret Michaels’ PFO Closure? 

    According to About.com’s surgery blog Bret Michael’s is scheduled to undergo PFO closure in January.  In this quick poll, I’d like to know how you think VH1 and Bret Michael’s new show Life As I Know It will address the controversial medical topic of PFO closure.

    Should VH1 show Bret’s PFO surgery and discuss the controversy?

     

    According to VH1 Life as I Know It premires Monday October 18th

    View trailers from  VH1′s  Life as I Know It

    To learn more about PFO visit PFO Research Foundation.org

     

    posted by David Dansereau for know-stroke.org

     
    • Brad 8:35 pm on October 16, 2010 Permalink | Reply

      It’s not necessary to broadcast a procedure that might not even be beneficial.

    • carol Marler 11:21 am on January 27, 2011 Permalink | Reply

      I want to know how he is getting to get this surgery. I have been in need of this surgery and have been told by several cardiologist that the FDA has it on hold and no one can have it!

  • David Dansereau 6:32 pm on October 14, 2010 Permalink | Reply
    Tags: , , pfo awareness, PFO current medical paradox, pfo diagnosis, pfo research, , pfo syndrome, plica and pfo   

    Perhaps PFO needs to be better recognized as a “Syndrome” to get equal treatment 

    After all, accurate diagnosis and treatment of plica in the knee, or “plica syndrome”, has an accepted surgical option after conservative treatment and medical management has failed.

    DP Dansereau, MS,PT for know-stroke.org

    First, here’s some quick background:

    Plica syndrome, while being quite well known to physical therapists and physicians specializing in physical medicine and orthopedics, is not a common term people are aware of, unless perhaps they’ve been diagnosed as it being the possible source of their knee pain.  Plica-syndrome, often characterized by anterior knee pain, is most commonly found along the superomedial aspect of the knee.

    The “plica” is due to remnant embryological tissue that compartmentalizes the knee during fetal development. The plica is sometimes considered  a “vestigial” structure, which means that it has lost its ability to function over time and does not functionally affect an individual whether it is present or absent.  It has been likened to the appendix, which can be a source of pain but lacks significant important function.

    I’ll make a case here for quick comparison that a similar flap, or cardiac remnant in the atrial septum of the heart from fetal development exists.  In the case of this heart anomaly, this “vestigial” structure is often referred to as a patent foramen ovale or PFO.  This left-over fetal tissue  sometimes takes the shape of a flap in some hearts.  Some PFOs have been  described as “tunnel-like” in appearance under autopsy.

    Patent foramen ovale has often been depicted as a defect or an incomplete closure in the walls of the chambers of the heart.  A patent foramen ovale can vary in size but the location is usually the same. As described in the literature, the flap like opening or hole is in the dividing wall (septum) between the upper two chambers of the heart – the left atrium and the right atrium.

    Identifying a PFO is important because a PFO is a potential pathway for a blood clot to escape from the heart and travel to the brain, causing a stroke.   Similarly, the plica in the knee can get trapped and irritated to a point where it impairs normal joint ROM (range of motion) and can cause often less debilitating but still serious limitation to ADL’s (activities of daily living) when compared to the devastating effects of stroke.

    How does this heart defect occur?

    In the womb, all babies have a PFO. This is because a baby does not use its own lungs to filter and oxygenate its blood. Instead, it receives oxygen-rich blood from its mother via the umbilical cord. This blood has been filtered and oxygenated by the mother’s lungs. The PFO allows this blood to be sent directly to the brain, which has a high requirement for oxygen-rich blood during fetal development.

    How common are PFO’s?

    In most people, the two flap-like sections of septum which form the foramen ovale (or hole) fuse together after birth to form a solid dividing wall between the right and left atria. However, in an estimated 15-30% of the population, this area of the heart doesn’t fuse together and remains open or “patent”. This opening makes it possible for blood to cross from the right atrium to the left atrium—this is called a right-to-left shunt. The danger of blood shunting in this manner is that if it contains small debris or a clot it has bypassed the body’s natural filter (the lungs) and can pass directly up to the brain and cause a stroke.  Worldwide, it is estimated that approximately 500,000 people may suffer this type of stroke each year.

    My Conclusion and the current Medical Paradox

    When symptoms arise this is  where my comparison between PFO and Plica go down separate paths.   Here’s how current treatment differs:

    Accurate diagnosis of both symptomatic plica and “symptomatic” PFO remains the predominant challenge.  The main difference is currently only with one syndrome the option of surgical treatment is widely accepted.   Why is symptomatic PFO not being fairly treated as a true medical syndrome?

    I’d love for you to comment below.

    DP Dansereau, MS,PT for know-stroke.org

    More Information / References:

    PFO Research Foundation

    Plica Syndrome

     
  • David Dansereau 1:53 pm on October 13, 2010 Permalink | Reply
    Tags: compliance with stroke meds, , , , stroke medication   

    Many Stroke Patients Discontinue Meds After 3 Months 

    These stroke meds are critical for many survivors to help prevent secondary stroke.  What’s going on here with almost a 25% non compliance rate?

    - DP Dansereau, MS,PT  for know-stroke.org

    According to a new study by researchers at Wake Forest University Baptist Medical Center  at least a quarter of patients who have suffered a stroke stop taking one or more of their prescribed stroke prevention medications within the first three months after being hospitalized.   The study identified several modifiable factors that are associated with stroke survivors’ compliance in taking medication that can help prevent recurrent stroke. The paper appears online in the Archives of Neurology.

    Researchers at Wake Forest Baptist and Duke Clinical Research Institute looked at compliance issues, as well as system and provider issues, such as what type of physician the patients saw, what kind of follow-up care they had and the patients’ understanding of their medications.

    The researchers studied 2,598 patients from the Adherence Evaluation after Ischemic Stroke-Longitudinal Registry to evaluate how many stroke patients continued taking their prescribed medications to prevent a second stroke three months after their discharge from the hospital. They found about 75% of those studied had continued with their full regimen of medications three months after discharge, while almost 20% of patients had stopped taking one or more of their prescribed medications and 3.5% of patients weren’t taking any of their medications at three months.

    Researchers learned from the study that multiple factors were associated with persistence in continuing secondary medication regimens, including, among other things, the presence of cardiovascular disease and risk factors prior to stroke, having insurance, having a better quality of life, and having an understanding of these medications and how to refill them.

     

    post by David Dansereau,MS PT for know-stroke.org

     
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