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

    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 4:08 pm on August 15, 2011 Permalink | Reply
    Tags: , , , , Migraine and PFO treatment, patent foramen ovale 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, , patent foramen ovale treatment, , 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, , , patent foramen ovale treatment, , 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, , , patent foramen ovale treatment,   

    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 3:39 am on July 10, 2010 Permalink | Reply
    Tags: blood thinning after stroke from PFO, , , patent foramen ovale treatment, ,   

    I am not a rat. I am a stroke survivor that had a congenital heart defect called PFO (patent foramen ovale) and I fought like hell to get it fixed 

    by David Dansereau for Know-Stroke.org

    Life after a stroke can be like living with a ticking time bomb.  The reality is that a second, possibly fatal stroke can very well follow the first.  In 2006, I survived a second stroke and shortly thereafter I vowed to make that one my last.  I researched all my treatment options, and as it turns out after 9 months of frustration I guess you could say I finally “qualified” to have my PFO closed “off label”.   What that really means is essentially my wife and I fought like hell to get a better chance at a treatment outcome we could both live with.   In the end, I weighed medical management (drug therapy) vs. surgically correcting my underlying heart defect.  My stroke could not be attributed to a disease process like hypertension or uncontrolled hyperlipidemia and no drugs or lifestyle modifications were going to be effective at reversing my risk of another stroke without possibly putting me at risk of further potential drug complications.  As the title of this post suggests, I was born with a congenital heart defect called a PFO that caused my stroke, and I decided a drug (yes, also used to kill rats) was not the therapy of choice for me for the rest of my life.

    My decision was not an easy one, but either is rehabilitating from a stroke and I say this cautiously knowing that many reading this may now be faced with the same difficult decision of how to best respond to take back their own health.

    I emphasize, you should speak with your own physician throughout the course of your own therapy and ask plenty of questions.  The decision I made was unique to how I envisioned I wanted to live my life after my stroke.  Your life goals should provide the blueprint for your own health plan, not your insurance carriers plan for your care.

    Honestly, I’ve had this article ready to post for several weeks now.  I actually started this response after a comment that appeared on my blog (know-stroke.org) about alternatives to thinning your blood. In response to my post I was asked through a private comment on my blog why I didn’t just stay on drug therapy after my stroke since Coumadin seemed like the “simple solution” to prevent another stroke.  Well, I have to put this out there that it simply isn’t quite that “simple”.

    Here’s what you should know:

    Yes, Warfarin is still used as rat poison.  This fact certainly got my attention when I was advised to start Coumadin therapy. I hope that you have already researched this medication on your own.  I mention it not to scare you but to make an important point:  If taken in large quantities, Warfarin (brand name Coumadin) can cause severe and even fatal bleeding. When given as a medication however and monitored by blood tests, it is reported to be safe but not without a long list of potential drug complications as reported by the National Institute of Health’s (NIH) Pub Med Website.  Here’s what they have to disclose on what side effects this antithrombotic medicine can cause:

    Warfarin may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

    • gas
    • change in the way things taste
    • tiredness
    • pale skin
    • loss of hair
    • feeling cold or having chills

    If you experience any of the following symptoms, or those listed in the IMPORTANT WARNING section, call your doctor immediately:

    • hives
    • rash
    • itching
    • difficulty breathing or swallowing
    • swelling of the face, throat, tongue, lips, or eyes
    • hoarseness
    • chest pain or pressure
    • swelling of the hands, feet, ankles, or lower legs
    • fever
    • infection
    • nausea
    • vomiting
    • diarrhea
    • loss of appetite
    • pain in the upper right part of the stomach
    • yellowing of the skin or eyes
    • flu-like symptoms
    • joint or muscle pain
    • difficultly in moving any part of your body
    • feelings of numbness, tingling, pricking, burning, or creeping on the skin
    • painful erection of the penis that lasts for hours

    You should also know that Warfarin may cause necrosis or gangrene (death of skin or other body tissues). Call your doctor immediately if you notice a purplish or darkened color to your skin, skin changes, ulcers, or an unusual problem in any area of your skin or body, or if you have a severe pain that occurs suddenly, or color or temperature change in any area of your body. Call your doctor immediately if your toes become painful or become purple or dark in color. You may need medical care right away to prevent amputation (removal) of your affected body part.

    Warfarin may cause other side effects. Call your doctor if you have any unusual problems while taking this medication.

    In case of emergency / overdose

    In case of overdose, call your local poison control center at 1-800-222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911.

    Symptoms of overdose may include:

    • bloody or red, or tarry bowel movements
    • spitting or coughing up blood
    • heavy bleeding with your menstrual period
    • pink, red, or dark brown urine
    • coughing up or vomiting material that looks like coffee grounds
    • small, flat, round red spots under the skin
    • unusual bruising or bleeding
    • continued oozing or bleeding from minor cuts

    Even rats it turns out can’t survive for long with all these possible complications of Warfarin (without getting their blood levels checked regularly I guess).  So, don’t be a rat.  If you are using blood thinning meds please get your blood checked regularly.

    Certainly, both drug and device-based therapy for PFO carries risks. Antithrombotic medications, like all medicines, have their long list of warnings, but many times we do not take the time to read the fine print.  PFO closure devices, however, are also associated with device-specific complications such as fracture of device elements, device embolization or thrombus formation.

    Bottom Line:

    Optimal stroke prevention strategies in patients with PFOs have not been established.  I am confident a solution to improving patient care for PFO conditions exists and my involvement with the PFO Research Foundation supports this mission. Yes, I do hold a bias towards PFO closure because my own results have been incredibly positive.   While I did try medical options including antithrombotic medical therapy prior to PFO closure, they did not work in my case.  What I do know is I do think about the long term impact of the implantation of my PFO closure device, because the benefit of PFO closure in patients with stroke has not been clearly demonstrated, and remains unclear and at times controversial.   I hope to help do my part to advance this important PFO research, so I guess you could say I will need to be a rat to help advance the science.

    Resources:

    Pub Med Health

    http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000634#a682277-sideEffects

    Wikipedia

    http://en.wikipedia.org/wiki/Warfarin

     

    • Jeannie 3:14 am on July 14, 2010 Permalink | Reply

      Thank you for your informative article. I’m beginning to re-think my medical advice about my PFO

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