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

If you’d like to find out what is in your local water supply, I suggest going to a reputable site developed by the Environmental Working Group (EWG), a DC based non-profit that has compiled a great resource  of almost 20 million records obtained from state water officials to make it easier for you to find out ” What’s  in Your Water?“.

Interestingly, throughout the country,  EWG’s research has  found 316 chemicals in tap water and many of them are going unregulated.  Go here to check your water source by zip code:  http://www.ewg.org/tap-water.

Here’s more on this water quality resource:

EWG’s searchable database of water test results allows the public to check out the quality of the water in their community, and EWG researchers have also compiled an easy-to-use guide to water filtration systems currently on the market, giving consumers some help when deciding which one works best for themselves and their families.  Again,  go here  http://www.ewg.org/tap-water to check your water quality.

To learn more about the arsenic level in Michigan water and increased stroke risk reported here, go to the Reuters article :

Arsenic in drinking water tied to stroke risk by Amy Norton
Reported by David Dansereau
Know-Stroke.org

David Dansereau (Know-Stroke.org)

Passing Along: Just posted on My-Physical-Therapy-Coach.com

Childhood-Obesity Study: Young Obese Kids Have Old Hearts

In this study that looked at childhood-obesity and the changes in the heart, it was the aorta specifically that showed early changes, consistent with the hearts of much older adults.

Permalink — click for full blog post “Childhood-Obesity Study: Young Obese Kids Have Old Hearts”

Are “heavy” kids at early risk of cardiovascular disease and stroke ?

Childhood-Obesity Study Says: “YES” !!

Post by David Dansereau

know-stroke.org

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

–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

Follow this link to the PFO Research Foundation to view the survey results

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.

With 60,000 Australians expected to suffer from a stroke this year alone, a new study aims to find the best approach to rehabilitation to help sufferers recover more quickly and reduce their stay in hospital.

After a stroke, people going through rehabilitation need as much physical therapy as possible to achieve the best results. Now UniSA researchers have been awarded a grant by the National Health and Medical Research Council to investigate a variety of approaches so that patients recover independence and get home as quickly as possible.

Read the full stroke recovery article at HealthNews

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