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

And is CBS and perhaps the folks involved in Miss Branson’s care that evening guilty of not knowing the stroke warning signs??  You decide…

There are reports from LA circulating that a local reporter , Serene Branson, may have experienced a stroke or “some kind of neurological event” while reporting live during the Grammys Sunday evening in Los Angeles.  This is certainly a terrible event for Miss Branson to have to deal with, and I do wish her the best.   At the same time I also encourage her,  at her earliest convenience , to go straight to the ER to be checked out ASAP.  It is certainly understandable that  Miss Branson would want her video replay to be pulled off the web but without seeing it and based only on the comments here it appears that reports may be correct.  The most disturbing part of this story is the update from CBS here:

This was the update from CBS today:

UPDATE: CBS 2 posted a statement about Branson’s condition, saying “Serene Branson was examined by paramedics on scene immediately after her broadcast. Her vital signs were normal. She was not hospitalized. As a precautionary measure, a colleague gave her a ride home and she says that she is feeling fine this morning.“

If Miss Branson indeed was slurring her words and had jumbled speech “all of a sudden”, then you simply do not allow someone to go home and sleep it off.   The best thing CBS could do, in my opinion, in addition to urging Miss Branson to seek follow-up medical care, would be to allow the replay of this event with Miss Branson’s permission.  Is she did indeed have a stroke, then it would be a once in a perhaps lifetime event for teaching stroke education “in real time” and learning the warning signs.  Read the mixed comments that follow the story here and you’ll see why we need to KNOW-STROKE !

I welcome your comments and please chime in if you actually witnessed this report live during the Grammys or the replay before it was pulled by CBS.

David Dansereau (Know-Stroke.org)

“Stroke Recovery is  not easy, but as Jamie Coyle and her friend Tedy Bruschi will say, you have to start by adopting an attitude to “Never Give Up”!  - DP Dansereau, Know-Stroke.org

As a physical therapist one of my most important tasks is to motivate my patient, learn what their true goals are for recovery, and find out what may have motivated them to action in the past (prior to their stroke).

Speaking from personal experience during my own stroke recovery, the key to achieving the best possible outcome is to not  give in and listen to that part of the brain that says, “enough is enough” and instead push through barriers and adopt an attitude to “Never Giving Up”.  Jamie Coyle knew from the first day I met her in her hospital bed that she wanted to return to skating, and her goal was even more specific, she wanted to play hockey again.   As a hockey player myself, it was not hard to connect with her and respond to her question to me at that first meeting,  “Will I skate again”?   I mentioned to her she’d need to keep the faith, maintain focus and most important, do the work.   She has truly owned that message and invested everything into her recovery, and I am so proud to see her back on the ice with her peers doing something she loves.  Way to go Jamie!

Watch the video feature below by Varsity Life’s Melanie Pellowski on Cox  Sports and Channel 10 .  Melanie has been following Jamie’s recovery and in turn has has done a great job helping to spread the word about stroke awareness.

If video does not play from image above click here to play

According to Patriots.com The New England Patriots will honor former linebacker Tedy Bruschi in a special halftime ceremony during  tonight’s game against the New York Jets.

Beyond his impressive numbers on the field and becoming an all time New England fan favorite, his peers and other stroke survivors look at Tedy with inspiration for his accomplishments off the field and for his dedication to the New England area. After Bruschi suffered a stroke in February 2005, he dedicated himself to raising funds and awareness to fight stroke along with the American Stroke Association. Bruschi established “Tedy’s Team,” a vehicle to help battle stroke, the number one cause of disability in the United States. Members of Tedy’s Team have run in the Boston Marathon and the Falmouth Road Race and have raised hundreds of thousands of dollars for stroke research.  Bruschi returned to the lineup for the final nine game of the 2005 season following his stroke.

In a recent interview with the Boston Herald, Tedy spoke of his special connection with the fans after coming back from a stroke in 2005.  During the conference call, he talked about what their support meant to him.  Here’s part of that interview:

”I needed that (fan support).  I needed it because there were times during my comeback . . . where I thought I wasn’t doing the right thing,” he said. ”This wasn’t a knee injury or a shoulder injury I was coming back from. Of course everyone is supportive and everyone wants you back there. But fans helped me with stories of how they overcame adversity. I got support from stroke survivors also and how they were able to comeback.

”Their comebacks were very different from mine,” he went on, ”but learning that from them really helped me a lot. The doubts that I had at times, I really needed the support from fans to know they were behind me.”

Fans sent him emails. Letters got to his house with just his name and city on the envelope. No street address.

”That’s the way a lot of (fans) got their letters to me, and I needed that,” he said.

see the full Boston Herald Interview

[Personal Sidebar] One recent comment on my blog shows just how Tedy’s work off the field with Tedy’s Team helps:

I am 58, almost 59 (in Jan) and had my life saved by the ads that Tedy did regarding stroke defense. I had just had an arterial bypass operation in my right leg and was talking to a nurse practitioner regarding pain management. I realized that my left arm had gone numb and I did not seem to be able to speak properly. This was mentioned to the nurse practitioner and she agreed that I was having a stroke. Turned out that I had 4 tia’s and am now on warfarin as a blood thinner and will have the hole in my heart repaired after I recover from the arterial bypass. If not for Tedy’s ads and websites such as yours, I would not have known what was going on and might have not come out of it with minimal damage. Thank you for the work that you folks do. Paul

Posted by David Dansereau for 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

This article has not yet been published but it was submitted to Tom Ward at the Valley Breeze recently by Sharon Coyle, mother of Jamie Coyle, a young stroke survivor from Cumberland,RI.  I have had the pleasure to get to know Jamie and her family over these past several years.  If you remember, I originally featured Jamie’s story on my blog several years ago- here’s the  link to that post with details on her story.  I hope that by sharing this you get a sense of what a family of a young stroke survivor might go through, especially when they still do not know what caused Jamie’s stroke.

Other Cumberland families of young stroke survivors, like Tyler Perry in town have similar stories, and more questions than answers.

Encourage the Valley Breeze to help spread stroke awareness.

Jamie Coyle photo provided by Fightfor7.com

“I have been a Cumberland resident for 10 years now. I also grew up in Cumberland and my mother moved us away when I was 13 years old. My husband Jim and I have 3 children ages 21-19 and 14. Two years ago something happened to our family that has changed us forever. Our daughter Jamie was competing in a hockey tournament in Marlboro Mass. when she suffered a stroke at 12 years old. Her story can be found on fightfor7.com. In the beginning she really didn’t want to share her story with everyone at school however events have occurred to make her change her mind.  That happened when we started hearing of other children in this town with the same story. We contacted the Health Department back in 2008. We also contacted the Center of Disease Control along with the President of the United States.

There have been 12 pedi strokes in our town in the past two and a half years. The center of disease control along with the health department have not tested anything as of yet. Jamie and I did put in a request to have the water, soil, and air tested. We are still waiting for this to take place. It makes you wonder what number of children they are waiting for to realize we have a situation on our hands. Believe me the last thing we want is to scare people. Our goal is to educate everyone in town to know the signs and act quickly to save a child. Most people would never think that a child can suffer a stroke. My family certainly didn’t. I remember the day 8-9-08 like it was yesterday. Imagine seeing your healthy child collapse during a sporting event. My husband and I new something was wrong and we rushed down to the bench. To our horror the coach from the opposing team was screaming at the ref to give our team a delay of game penalty. The Vermont coach was also telling the ref to move Jamie to the back bench in order for the game to continue. Sounds crazy right? This is a prime example why Jamie wants to educate parents, coaches, and teachers alike. Jamie was awake the entire time and could hear everything the coaches were saying. She was greatful that one of her coaches on the bench that day is the captain of EMT.’s in our town here. He of course had no intentions of moving her and summoned the ref to call 911 saving her life.

Two years into her ordeal and Jamie is ready to make a public service announcement to educate and possibly save others. We do not want to see one more family have to walk down this road. Jamie and I strongly feel to do testing even if we never find a link to the environment is better than doing nothing at all. We feel that talking about this problem can help families in many ways. Health coverage hardly covers the many needs for these children or new technology which could prove to be very beneficial to the children’s recovery. These children have their whole lives ahead of them and as a community and a state we should all do whatever humanly possible to help them succeed. They are our future. Our hopes are that every parent that reads this letter would like to meet with Jamie and see what role they could play to help her save others from the same fate. When a group of mothers assemble for the sake of the children the possibilities are endless. Mothers can move mountains together and suddenly the red tape disappears and money is no longer the issue. There is much more to be discussed. Please help Jamie to help others.”

God Bless,

Sharon Coyle

Jamies mom

Fightfor7.com

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.