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  • David Dansereau 4:00 pm on September 21, 2011 Permalink | Reply
    Tags: David Dansereau and PFO, , 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 4:08 pm on August 15, 2011 Permalink | Reply
    Tags: , David Dansereau and PFO, , , 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 4:50 pm on October 7, 2010 Permalink | Reply
    Tags: , David Dansereau and PFO, exercise guidelines for pfo, , , , ,   

    Exercise Guidelines for PFO Patients Needed 

     

    Know-stroke.org-Exercise Guidelines for PFO Patients Needed

     

    The PFO Research Foundation recently met in Washington, DC for its first PFO Summit.  I attended the event and was hoping for both practical and selfish reasons to get some clarity on exercise guidelines from some of the world’s top authorities on PFO.  Instead, what I learned in one of the breakout sessions aimed at developing better guideline documents and educational materials for patients with PFO disorders is that we have a great deal more work to do to get better patient information out there.  I reference a recent post to my blog from Sept. 28, 2010, at know-stroke.org to illustrate this point:

    “I just found out I have a PFO after a cerebellar stroke and ministroke in 27 months. I am 45. Should I be scared to do cardio, how much, how long, what should I avoid? Thanks Dave, I appreciate reading something from someone who seems a lot like me.”

    What should this person do?  Known PFO, positive TIA/stroke and would like to continue exercising/working out.  Is cardio fine?  Are weights OK?  What about swimming?  Climbing at altitude?  Diving?  We know these situations may present increased risk but where do you draw the line?

    Patients are turning to the web and patient forums for guidance clearly because they are not getting answers from their physicians or device manufacturers.  It’s simply not enough to tell patients “you can’t avoid the valsalva maneuver*” in daily life.  No kidding doc, really?  Is that the best advice we can give?

    I learned “off the record” after running a marathon that perhaps (running long distances) was not the best decision for me “down the road” with a PFO occluder on board.   This inside information was shared with me by a physician recently after my primary cardiac physician had cleared me and stated after more than one year post PFO closure “if my legs could carry me that far and my brain was crazy enough to talk my body into 26.2 miles then my heart would be fine”.  OK, so, what is safe?  What should PFO patients be doing for exercise  (or not doing) 1-3 weeks after closure?  How about after 6 weeks?  What is really so special about 6 weeks?  Why not 1 year (or more)?  Should every occluder device have its own post-op protocol based upon the design?  Perhaps.   What about exercise guidelines for known PFO/stroke confirmed without closure like the recent post on my blog I illustrated above.  What about known PFO, no stroke, no closure but enrolled in clinical trial related to migraines?  What about guidelines for that same patient sent home on meds or  following sham closure procedure.  Follow me?

    [Personal Sidebar] I had contacted the device manufacturer that built my heart plug several years ago after I had PFO closure.   I asked them, -NO-I challenged them to get their patient education website completed and build a useful patient resource to assist patients that were in my shoes.  That was well over 3 years ago.  The result: Still no website for patient education.  Nothing.  I’m still waiting…

    Who’s to Blame??

    Blame the FDA, insurance companies, poor clinical trial enrollment, whatever excuse we want to make, this is certainly not “best medical practice”, it is not acceptable and is in fact poor medical practice. As a practicing physical therapist, if I sent someone home after a total hip replacement and didn’t remind them that there were clear post operative hip precautions that they should be aware of following their procedure (and based upon the technique and specific device they had implanted in their body), I could be fired and sued if they went home and blew out their hip because I didn’t educate them.  That is simply part of my job!  Why are heart plugs different?  The last time I checked they were still being inserted directly in the center of our most vital organ.

    “Patients can’t continue to afford to be the pigs here.  Patients are literally putting their “hearts on the line” and deserve so much better.  When I ran the Boston Marathon in 2009  I didn’t recall any pigs passing me with a clinical trial advertisement on their bib.”-DP Dansereau

    I certainly hope this post serves as a challenge to industry and physicians to be more responsible and get our collective acts together to set things straight for patients.  At least that is why I continue to write this blog, and yes, industry, this blog creation was and remains my direct response to your failure to step up and do something.  Truth is, I write most of my content on lunch breaks and late on Friday evenings after my responsibilities as a dad and business owner are complete. (This is at least my excuse why I frequently have typos in my posts.)  I write this blog because in some way it helps patients ask more educated questions and hopefully make their medical care takers stay on their toes, at least that’s what  I’ve been told.  I have no financial disclosures to report, don’t know any venture capitalists, and have no potential gain if PFO closure proves to be a slam dunk for stroke prevention or migraine relief.  I just own the peace of mind that I did something.  Now, I must get back to my patients, and then perhaps go out for a run later this evening when I get done here at work.

    Or should I ?   Who knows?   I’d love for you to comment here if you do….

    Better Exercise Guidelines for PFO Patients

    By David P Dansereau

    For know-stroke.org

    * Valsalva maneuver: A maneuver in which a person tries to exhale forcibly with a closed windpipe so that no air exits through the mouth or nose as, for example, in strenuous coughing, straining during a bowel movement, or lifting a heavy weight. The Valsalva maneuver impedes the return of venous blood to the heart.

     

    • Pam 1:06 am on November 11, 2010 Permalink | Reply

      My question exactly …. At my one-month post-op appt. today my cardiologist said I should wait another two weeks before I start back to my cardio regime (running, cardio classes, swimming, etc.). Initially, he said four weeks. The question is when does a person reach the point where there are no recommended restrictions for exercise?

    • David 7:57 pm on November 11, 2010 Permalink | Reply

      That is the million dollar PFO/exercise question Pam. I wish I had the answer for you but as you can see even your doc seemed a bit vague with your post-op exercise instructions. I did not go back to unrestricted exercise for almost a year following closure. I was working on restoring balance and stability and these are not exactly “high risk” activities. Because my post exercise instructions were also not that clear I went by what I learned in PT school about the rate of tissues healing. While soft tissue surrounding a joint may not be the same as cardiac tissue I did play it safe knowing that soft tissue injuries “or healing” need 12-18 weeks to fully “remodel”. In PT there is then a re-strengthening phase that goes in stages that often takes up to a full year to return a joint to full strength prior to when it was damaged. While this may be the extreme example, I decided I was not going to take a chance and blow my recovery with my most vital organ at risk. Those recovery guidelines I just outlined were my own and pls. take them for what they are worth but having that knowledge at least helped guide my own healing, both in my heart and my mind. I know you’ll also find out on the web other extreme examples where physicians are telling their patients it is safe to go running day 2-post-op. That’s why the medical community involved with PFO closure needs to do better educating and why we hope to get better guidelines established through our patient led group at PFOresearch.org
      Thank you for your question.
      David Dansereau
      know-stroke.org

    • Michele 3:41 pm on January 19, 2011 Permalink | Reply

      David,
      I too am in the medical profession, as a retired, R.N. No doubt, it has helped me immensely to be able to ask questions, logical ones, of what to expect post closure. I too, have been met with the same, ‘you’ll be able to go back to work in a few days with a few limitations, like lifting and the like…’ or, ‘you’ll need to take it easy for awhile…’ all the way to, ‘you reallly should not lift anything above 3 pounds for 4-6 weeks…’
      Then of course I was told, by my cardiologisit, of a 10 year old who had the PFO closure done, who, apparently felt well enough to shoot some baskets on day 3, and his device ‘popped out’ and embolized, and he died immediately… And, of course, he told me about the woman, who had her every 6 month echo for 1.5 years, then between the 1.5 and 2 year check up she had a stroke, and the echo revealed a huge scarring tissue in her atrium around/over and behind the implant. She had to have open heart to save her and get teh implant out!
      On teh PFO research foundation FB page, I read of patients with weekly migraines, marked chest pain for 1+ year post closure, and I am left with a sinking feeling…am I a desperate guinea pig?
      ‘If’ the >13 lesions on my brain are in fact stroke sites, why did the 1st neuologist phoo phoo the then 4 lesions as, ‘normal to have one for every decade of life’ (I was 42), one year later, and now 13+ lesions, I was told by my 3rd neurologist, ‘it could be MS, but, because you have a PFO, we have to make sure it is not strokes, from the PFO.’ Then neurologist #4 & #5, concurred, I am having strokes, likey passing emboli through my PFO…’
      I am presently scheduled for Feb. 11 for investigational cath as I am scared of the implant, and want the doctor to first look, and investigate teh secondary shunts, fix them, and then come out and reprot to me just how bad that PFO really looks. If he says, it is huge! well, i guess I will be scheduling a 2nd cath, for closure. (?)
      But, what does ‘return to work’ mean, when you are a mother of 5 young children, still home. (I can’t ‘leave’ work) My toddler will still have emergencies that need rescue. And, if doctors do not give explicit protocol for family members to have the right expectations, then everyone will think wife/mom should be back to business as usual. We have around 10-15 loads of laundry around here weekly. Is pouring a gallon of milk (8lbs) for my toddler, over the weight limit? Can i lift from above my head, and, if so, how heavy should it be? If I catch my kids throw up flu bug, do I need immediate phenergan to make sure I don’t put too much pressure on my new implant,due to massive valsalvaing? should I be in cardiac rehab? Stroke Rehab? What do I report? Should I be working with a PT to gauge my activity tolerance? the days are ticking down to Cath Day…and somehow I am suppose to submit to this implant being put in me, without knowing these answers. And, if you are being told you have had >13 strokes in the last 15 months, do you delay the procedure? And, ‘if’ I have really had >13 strokes, why am I not in stroke rehab?
      Michele~
      (43 y.o. Mother of 6, married 23 years)

  • David Dansereau 2:52 pm on August 16, 2010 Permalink | Reply
    Tags: David Dansereau and PFO, patentforamen ovale research, , , pfo risk, subclinical MI   

    Study suggests better imaging needed to detect possible embolism from patent foramen ovale (PFO) 

    Quote from recent study reported in Cardiology Today:

    Wöhrle J. J Am Coll Cardiol Img. 2010;3:833–839.

    PFO Heart Defect

    Image Courtesy of PFO Research Foundation

    “It adds to the growing body of evidence that a PFO has multiple, potentially adverse, consequences that are often not noticed. Although a plethora of literature addresses stroke in patients with a PFO, no systematic study has evaluated embolism in other organ systems,” he wrote. “[This study] also encourages the introduction of better imaging to detect currently unidentified pathology.”

    Read the full article

    Learn more about PFO at PFOResearch.org

     

  • David Dansereau 3:39 am on July 10, 2010 Permalink | Reply
    Tags: blood thinning after stroke from PFO, David Dansereau and PFO, , , ,   

    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

  • David Dansereau 4:46 pm on January 14, 2009 Permalink | Reply
    Tags: , David Dansereau and PFO, , stroke and migraines, stroke and PFO closure   

    Popular, But Not Science ?? 

    Image Preview

    Barry Meier of the New York Times interviewed me recently for an article on stroke and PFO.  His story appeared in the New York Times Business Day section today with the same title as this post.  I’ve only added the question marks because after reading the article it only leaves me wondering why science and big business can’t get it right… read the article and I’ll follow up with my 2 cents in the next post

    http://www.nytimes.com/2009/01/14/health/research/14heart.html?partner=permalink&exprod=permalink

     

    • eideard 1:52 pm on January 15, 2009 Permalink | Reply

      David – thanks for dropping by and commenting at my personal blog – where I’d posted Meier’s article.

      Primary source info is a scarce commodity, nowadays, No less so on the Web.

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