-David Dansereau for Know-Stroke.org

It was argued recently on New England Sports Network (NESN.com) which sports figure in New England is the greatest.  With names like Bird, Orr, Williams, Bourque, Russell, Yaz and Brady to name a few, how do you decide?  I guess it matters just which Boston sport is your favorite, but I would argue another “Teddy Ballgame”, which didn’t get mentioned by NESN would be the other, Tedy, not Williams but last name Bruschi, that was not mentioned.

I’m sure it isn’t just my argument, because few sports legends in New England still create such a buzz with their presence as players like Tedy Bruschi and Bobby Orr.  You can see that clearly when you attend a Bruins game at TD BankNorth Garden and you still  witness B’s fans donning the #4 Bobby Orr Bruins jersey, even several decades after he quit lacing up his skates for the Bruins.  The same can be said for Bruschi.  I recently had the privilege of attending a Patriots preseason game this year with my family and while “tailgating” with my wife and two young sons (yup,drinking juice boxes),  we noticed there were just as many #54 Bruschi jerseys in that parking lot as any other active Patriots player.  Equal numbers of these Bruschi jerseys were being donned by respecting fans in the stadium as well as by the Kraft family’s tribute with life-size photos of #54 in the halls of Gillette Stadium.

It is this same legendary impact, or “Bruschi Factor”, that could give such an enormously needed boost to stroke awareness. Take for example the impact of Bruschi’s recent trip back to Gillette Stadium on November 3^rd to speak to students from Holbrook Junior-Senior High School, and the influence the “Bruschi Factor” had on the entire school.  Tedy took the time to address 260 bright young minds about his story and his book “Never Give Up: My Stroke, My Recovery & My Return to the NFL” and discussed lessons learned with these students.  What impressed me the most about this story was what the students did on their own to help spread stroke awareness.   The story as reported on Patriots.com mentioned that the students were so impacted by Tedy’s book that “it extended well beyond English class, as the school tried to incorporate it (stroke awareness) into all aspects of the school, discussing the science of strokes, doing football-related math problems, and even working it into the school’s student council program.”   The Patriots.com story concluded with students “even surprised Bruschi with the donation of $1,054 – in honor of his 54 jersey number – at the event”.

So, whatever motivated these students by Bruschi’s message is the same “Factor” I’ve been trying to get the American Stroke Association (ASA) to fully “Tap” for stroke awareness.  Since recovering from my own stroke, I’ve been involved with Tedy’s Team raising awareness and funds for stroke research and education.   Last year I submitted a greater Boston Community Impact grant proposal through the American Stroke Association targeted at gaining better stroke awareness for the young faces of stroke.  My “Bright Minds” proposal is aimed specifically to Boost KIDS IDEAS ABOUT STROKE -(Identifying and Delivering Education About Stroke) Tagline:“Using great ideas from Young minds to get Grown-ups thinking BIG about Stroke.”

Unfortunately, I recently learned my proposal was not funded by the AHA/ASA.  I am “boosted” by this recent story on Patriots.com because it demonstrates exactly my intended “Bright Minds” concept and the potential  impact my proposal could have on kids and stroke.  So, I’ll keep trying.

I know this requires Tedy’s time and talent, but the outcome could indeed provide for a Legendary Impact on Kids Stroke Awareness throughout the Nation.  Perhaps, “Bruschi on Tap” someday might not only mean lessons learned from being a great player and now great analyst breaking down the game, but also for his ability to tap “Bright Minds” to be in touch with knowing stroke warning signs and “Never Giving Up” .

David Dansereau for Know-Stroke.org
Read more on the sources cited for this post at:

Students Treated to Special Meeting with Tedy Bruschi

Boston has seen its fair share of great sports figures, but which one is the greatest?

To read my comprehensive Bright Minds Stroke Awareness Proposal or to consider helping with alternate funding sources please contact me through my corporate link and I’ll gladly send you my proposal details.  Thank you.

see also PFO Research Foundation at pforesearch.org

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 2^nd 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 (Know-Stroke.org)

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.

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

Please help me cross the finish line in Boston 2010

That’s me crossing the finish line in Boston 2009

Why put my body through another marathon?  Trust me, I’ve already gone through my list of excuses again why NOT to run.  But, even though I crossed the finish line last year and completed every step of those famous, grueling 26.2 miles in Boston, I have not reached my goal of national stroke awareness for improved screening,detection and treatment plans for PFO/Stroke/ and uncovering the possible migraine connection.  In the next few posts I’ll be updating you on the progress made towards my national stroke awareness goals in case you are reading my blog for the first time or want to get caught up or get involved to help-so stay tuned (but don’t wait to donate).

Please help me reach my stroke awareness goals and cross the finish line in Boston 2010

PLEASE DONATE NOW!

Thank you!

Making progress towards The Oprah Show

by David Dansereau

Article from Today in PT magazine

Last month I reported to you that I was picking up the pace trying to spread the word on stroke awareness, even getting interviewed by the NY Times for an article on PFO/stroke. This is just a quick post to show you that I’m still spreading the word trying to get to the big show, that being The Oprah Show with my message.

I was interviewed by a writer from Today in PT magazine and that article appears in their March issue. You can read it online here: Read the full article

It has been a long and mostly frustrating several months since the ordeal I spelled out in this article. I thought about pulling down my story and taking it off the web after I finally was cleared to have heart surgery to correct my PFO on May 1st. After much consideration, I felt it it important to leave the information and build on it to help raise awareness for stroke eduction.

Thank You

I have had such great support over the last several months during my recovery. Again, I want to thank everyone for their well wishes and their understanding over these past several months. I admit-it took some time for me to realize it, but I now know just how important it was to STOP all my running around and follow doctors orders to heal, both physically and emotionally. This also turned out to be a blessing on many levels and I want to let everyone know the real stroke hero has been my wife for staying so strong for me and our family. Thank you Lisa with all my heart.

The results have been excellent and well worth the long wait for me…

For the first time in more than 9 months I have a clear head. The surgery that repaired the hole in my heart has also instantly stopped the daily migraines and headaches I had been experiencing for all these months prior to surgery.

How could this happen and why does it take so long to get treatment? I don’t think doctors have the answers yet on many levels -but it has me completely intrigued. Regardless, I feel great and ready to get moving to raise awareness.

Here’s what I’ve been doing

Watch my video

By the way…You proved to me there is a need

By posting my story on the web, my website received hundreds of “hits” after the first ezine issue where I discussed my stroke. When I looked at how folks landed on my site I noticed (now over 8,000 hits to date) had arrived at my site by Google and Yahoo searches alone for the terms PFO and migraine. That was amazing to me just how many people are out there searching for information on these topics- much in the same manner I had been months earlier. The other interesting response was the feedback I received and responses where individuals recalled their own stories with similar struggles getting a diagnosis and treatment plan. My conviction to stay focused on launching a stroke awareness campaign was reaffirmed after reading your stories. As mentioned, I am establishing a dedicated blog http://knowstroke.wordpress.com to this topic and I urge anyone who wrote to me to please post their experiences

(see Share Your Story on my blog) to build a forum for support.

If you choose to remain private I certainly understand your position, but please call me directly in confidence if you simply need to bend an ear. If you would like to speak to me personally about donations, fund raising ideas, or ways you could help raise awareness in your own neighborhood please call me directly at (401)632-0868

Please consider a donation to Tedy’s Team and the American Stroke Association here

“While I have remained mostly silent about this issue over this past year, I now know I must let everyone hear my message so that I can help do something to educate others.”

-David Dansereau,Stroke Survivor (know-stroke.org)

David Dansereau (Know-Stroke.org)

Several months ago I had a stroke. It was revealed after months of testing that it was caused by a defect in my heart from birth called a patent foramen ovale or PFO . The few people I had spoke to about this to this point were on a need to know basis and even then, I summed it up to them as “remember what happened to Tedy Bruschi of the New England Patriots at the end of the 2005 football season?”. If you don’t know about his story, he also had a stroke from a PFO.
I used that line in part because I was still in denial- I could not have had a stroke at my age- and also-because I didn’t want to share details on something so personal.

I’d like to take the time to tell you now about my experiences and the reason I have started this blog to raise awareness about the hidden stroke risk of PFO and the connection between the brain and heart.

This first post is rather lengthy but I feel it is important that I include all the background information on PFO presented in the order here. I hope you take the time to learn more about this condition through this summary of my own experiences and pass along the information to anyone who will listen.

You’ll learn a bit more at the end of this article on why I intend to raise awareness for this silent risk factor for stroke. (Skip to the raise awareness section at the end of this article if you are short on time.)

First of all, what is a patent foramen ovale?

Also referred to as a PFO, a patent foramen ovale is 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. 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.

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 15-25% 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.

For review of stroke risk factors and understanding the different types of strokes follow this link to the American Stroke Association.

Stroke Risk Factors

What circumstances increase risk of stroke for someone with a PFO?

The two flap-like sections of a patent foramen ovale overlap and usually prevent blood from crossing from the right side to the left side of the heart because the pressure in the right atrium is typically lower than in the left atrium. Under certain circumstances the pressure inside the right atrium increases to such an extent that the flaps may separate. This allows blood which has not been filtered and oxygenated by the lungs to “shunt” or cross the PFO from the right atrium to the left atrium. People with a PFO are generally at most risk of an event if they perform a Valsalva maneuver while straining or lifting. This occurs when a person exhales with a closed windpipe, exerting pressure on a PFO. Some examples are: certain exercises like lifting weights, lifting heavy objects or while straining during a bowel movement or childbirth. Depending on the size of the PFO many people with this condition will have no symptoms. Small amounts of blood shunting do not usually cause problems.However, if a PFO is large enough and the blood that crosses the PFO contains debris or a clot, this embolism can enter the arteries which supply the brain and cause an ischemic stroke or transient ischemic attack (TIA).

How is a PFO detected ?

From my personal experience, A PFO can be easily missed on physical examination. A PFO will generally not be detected during a routine physical especially if is not causing symptoms at the time. For example, listening to the heart through a stethescope, measuring blood pressure and heart rate and even by using a more involved heart monitoring device, an EKG or ECG, can all be normal. These routine observations, along with basic blood work are all part of the normal tests completed during a physical.

So, how do you know??

Not until symptoms develop unfortunately. In my case I had been experiencing unusual fatigue, migraines with aura (vision loss) and light tremors for quite some time. In my gut and in my appearance I knew something just wasn’t right. I also noticed my tolerance for exercise was declining, my heart would sometimes race unexpectedly, and I would be looking for the pillow to put my head down to rest right after getting the kids down to sleep. Basically, I was exhausted. I had tested negative for mono and a host of other potential viruses or the other usual suspects. It wasn’t until I had experienced an increase in the frequency of migraines that more extensive tests were initiated. I then had multiple MRI’s of my brain and neck performed, CAT scans, wore a halter monitor for 24hrs to keep track of my heart and was poked lots of times to analyze different blood work profiles.

Even with this information it was not clear what was happening to me with any degree of certainty. I had received provisional diagnoses that went from having MS (multiple sclerosis), to a brain aneurism, to having lupus, guillian-barre or some other autoimmune disease.

What was known for sure was I had unusual changes to certain parts of my brain for someone my age.
I then went for more tests and had comparative studies done of my brain through repeat MRIs and then more bloodwork to reveal that a had “ruled in” for a stroke. “No way!” was my original response. At first I was in denial because I knew my risk factors for stroke were very low, so I thought…

My risk factors for stroke? None-so I thought…

Let me give you a bit of my health history so we can go over this together:

Additional history:
Stress level-Low at work- even though I run my own business I love what I do and anyone who knows me will tell you I generally let everything roll off my shoulders…
Stress level-Home/social- Moderate/high –Any parent reading this knows I would be crazy if I said raising 3 small kids is not a challenge. But my wife and I fortunately are SO together on this and she is a wonderful supportive spouse and excellent mother to our children.
*Exercise intensity. I had completed the Rhode Island and Boston Marathons as well as participated in other endurance events like biathlons and distance bike rides. Never had experienced unusual symptoms. (never won any of them however I always finished!)
Sports: Played baseball and hockey in high school Never recall having had a problem with my heart during any game.

One significant event. I recall one incident during a high school hockey practice that I now know was when I had my first “TIA” or mini stroke. I was waiting for my turn along the boards to skate through a drill when I lost the use of the entire left side of my body. This event lasted for only a few minutes but it seemed like an eternity at the time. The event passed, I continued to play, and told nobody about it other than a coach who had witnessed me fall. (Looking back, most definitely a mistake on my part and that of my coach but more on this in another article coming for parents and coaches)…

So, how did I rule in for a stroke?? Apparently it is not until someone my age with no significant warning signs has a stroke or similar event like the ones I described that the heart gets a closer look at as a possible cause of concern. The second event I had that ruled me in for a new stroke was when I had the intense headaches/migraines that lasted for a solid week. To confirm the Neurologists suspicions I had a special ultrasound study of my heart performed (Ultrasound with bubbles) where saline bubbles were injected in to my veins to see if they passed between the upper chambers of my heart. They did see bubbles shunting. Not normal. What to do next? Need to determine the size of the PFO. Simply slowing down the recording of the heart and counting bubbles that passed through during the ultrasound is not enough to really measure the size of the hole. So what’s next? In my case a TEE (transesophageal echocardiogram) was ordered. During that test I was placed under general mild sedation while a small camera was passed down my throat to get a closer view of the heart from inside the chest wall. The esophagus runs next to the heart and the TEE provides clear, detailed images of the heart and blood flow. Other than having to swallow some vile goo to numb your throat- the test is painless because you are basically out cold.This picture can usually determine the size of the hole and determine how to best treat the defect. In my case it was revealed I have a “moderate” size hole. Not good.

What are my options??

How can a PFO be treated?

There are different treatment methods available to help prevent stroke or TIA in patients who have a PFO.

Medication
Traditionally, stroke or TIA patients who have a PFO are given medication to thin the blood, or to make it less “sticky”, and prevent the formation of clots which could lead to stroke. Typically, these drugs include warfarin and aspirin. Treatment to prevent embolic stroke has traditionally required a drug regimen of anticoagulants (blood thinners), which prevent the blood from clotting and therefore may impose significant lifestyle restrictions on patients.

Surgical closure
Until the 1980s, open heart surgery was the only alternative to medication. Today, these procedures are infrequently performed because major surgery is involved and the risks are significant. Currently, less invasive experimental methods are available, for example non-surgical closure.

Non-surgical closure
Nowadays, there is a non-surgical method to treat PFO using a device called a septal repair implant. It is important to note that this procedure is not yet FDA approved and is referred to as “Off-Label” according to some interventional cardiologists you may speak to.

What is involved in the non-surgical PFO closure procedure?

The procedure is carried out by an interventional cardiologist, a doctor who has been trained to access the heart for diagnosis or treatment using specifically designed equipment. The procedure is performed in the catheterization laboratory of the hospital. Before you become a candidate for this procedure, you have to be assessed as appropriate for closure through use of the TEE test I mentioned, other anticoagulation blood work, and depending upon which hospital you go to, receive an unanimous decision from specialists in three separate disciplines to allow this procedure. (For example, in Boston it is cardiology, neurology and hematology). In one such Boston hospital I went to for a second opinion, it is in the hands of this PFO committee of doctors I described above whether your heart is appropriate for closure. (Yes, MUCH more on this later in a follow up article…)

The closure procedure itself involves threading a small, hollow tube, called a catheter, up into your heart through a vein in your leg. Various septal repair implant are being experimented with. The most popular one available now looks like a mess sleeve that can be folded rather like an umbrella. It is passed through this catheter to your PFO and then this umbrella is opened to block the hole. All the time, the interventional cardiologist can see your heart and the catheter equipment being used inside your body on a monitor. This ensures the catheter and implant are correctly positioned. Over time, heart tissue grows into the mesh and over the frame to fully cover and seal the septum.

Bottom Line:

I took the time here to present my own lengthy case study because I am still not sure of my own outcome nor do the experts know at this point what are the best options in my particular case.

The facts:
I know my skills and the type of manual physical therapy I enjoy using in my work to effectively treat patients places me at increased risk.
I also have responsibilities at home with young children and can not possibly stop everything I’m doing to let the science, technology and the doctors catch up. This whole process so far has tallied almost $45,000 in medical expenses (thank God to this point the costs have been covered by our insurance). These expenses were to reimburse for diagnostic tests and visits to specialists too numerous to count. With that number in mind, the specialists are still mostly uncertain on how to best treat my condition.

What I do know is that I still have daily unexplained migraine headaches, I am picking up my kids and going about my day and I am more determined than ever to make a difference.
You see, a doctor can’t answer the question for me that my three year old son always asks me when he knows I am not feeling well – “daddy, when your head feels better can you pick me up?” Basically, I am thoroughly frustrated and through with waiting. You see, the only advice I have received to date from physicians in Boston is “Not to pick up my kids or to work” until six weeks after I had this defect repaired.

OK, so what to do after that statement? Panic. Right?

Then try to set up an appointment ASAP to get this hole closed right away. Only as I had mentioned I have to first meet with a committee to get unanimous approval (by hospital policy) to ensure that this is the best option for me. OK, the surgeons say cut and get it done right away but here’s were I lose my cool. What pains me the most these days is I am almost going on three months and I’m still waiting for the rest of the required committee to even see me. To make matters worse, I am not even close to being on the top of their cancellation schedule. This despite, we have tried “pulling all of our punches”, calling every “who knows who” lead to get in quicker, and even going against accepted strictly held practices “in committee circles” and actually pleading my case directly to the secretaries trying to be seen.

Then, just last week I received a note in the mail that I’m scheduled for an appointment in late June. OK, it is now March. And that was supposedly the ”easier” of the two doctors to get seen by. Wait some more for Boston I guess…

While I am STILL waiting on the next available appointment for Boston I am rethinking trying to figure things out here in Rhode Island at the same time. I received my original diagnosis in Rhode Island and went to Boston for a second opinion. Rhode Island does not have a formal PFO committee but I was told by their interventional cardiologist that I was I candidate for closure and to set up a date. The only problem here is that I am receiving conflicting reports compared to the opinions in Boston. In RI, I am told that in my particular case I would be argued to be “on the fence” or in ” a grey area” to close my PFO because of the risks involved and it was advised I try medical management first. You see, it is the thought of some physicians that intense migraines can cause “stroke like” changes in the brain and can cause a stroke even considering the fact I have a PFO already (to make things even more confusing).
Anyway, I cautiously followed a medical management approach for a short trial. I went on a low dose cardiac medication to reduce the risk of another event by trying to dilate my blood vessels and possibly reduce the intensity of the migraines. Unfortunately, I tried the drug therapy (calcium channel blocker) and it actually intensified my headaches, gave me tremors and made me feel quite odd to a point of saying I would not have trusted myself driving a vehicle. I stopped the drug therapy.

RAISE AWARENESS

So here I am. You know my full story now and are up to date. I’ve stopped the medications except for a baby aspirin and am using my own dietary means to keep my blood thin. Whether I will ultimately require this surgery remains to be seen. What you are not up to date on is my motivation to make a difference.
This is something I can take control of while the physicians try to figure this out. I have been working on a plan to help others learn from my experience. I feel very fortunate that I was not left completely impaired from this event. I still have periods of noticable loss of balance and coordination as this was the part of my brain that was injured. Just when I think I have recovered from this deficit, I’ll walk through a doorway in my home and completely misjudge the opening. I usually hit the door frame like a linebacker in football taking on an attacker and that’s when I realize I still have work to do.

But I am VERY lucky and I know it. Having worked in acute rehab as a PT I have seen the devastating results a stroke can inflict when it attacks the brain.

Turning PointsI had three events during this process really stick out in my brain and at times they still keep me awake thinking about how to fix them.

1) Something one of the physicians in Boston said to me while he was taking my history and recording data for possibly enrolling me in a PFO closure study. I had asked him a question about why so little information is out there and available for people on PFO and migraines? Part of his reponse really alarmed me, it was that “insurance companies don’t want everyone to go running to their doctors” to have their hearts checked. What? All the money, time, fear and resources I and my family have gone through and that was the response. Insurance costs?? He has to be wrong. But I intend to find out and make lots more people aware in the process.

2) General chaos: I went through my detailed history to clearly illustrate the uncertainty for which this condition presents. At least in my example I’ve experienced delays and miscommunication by doctors that I have dealt with in the same hospital or between hospitals, all in the same areas of expertise. They either can’t agree or don’t communicate on the connection here. That’s what the studies are for I guess to facilitate the science, but they are leaving many patients like myself very frustrated. It gets me thinking how many others out there are experiencing the same symptoms I am in silence. From some of the forums online I have tried to get a picture of this problem and I know it is an issue. Many young adults and parents with young families describe similar situations and the theme is the same- they are all looking for answers and the best treatment options. The question that must be asked is how can we be doing better?

From the statistics I presented for you on PFO, the number of people potentially with symptoms are as high as 25%- 1 in 4 ! I guess I picked a one. I can’t put it back, but I HOPEFULLY can do my part to raise awareness. Which leads me to the third and most important event in my story.

3) The final event that compelled me to take action happened just last week. I guess I was up late one evening and my brain was working overtime trying to figure this whole thing out.

What to do with my business? How to handle family and finances? How to treat these headaches or reduce the risk of a repeat event? And, if there’s a next time, will it be the “big one?”

Anyway, my wife was watching a special about Oprah and her dream of opening a school for girls in South Africa. For some reason the young girls eyes in that show just grabbed my attention. Then I took the time to sit down away from my computer and listen to their stories. Their situations captured my heart.

Did you see this show??

What the heck was I feeling sorry for in my own life??? These girls had absolutely nothing but a dream of a better future and making a difference for people in their country. They had basically nothing but knew EXACTLY what they needed to do. The way they spoke so eloquently about their goals despite not even having a bed to sleep on at night. Wow! By then my wife had fallen asleep, and I am glad she did because I was in tears. If you didn’t see this Oprah special make it a point of going to her website, getting a Tivo copy from a friend or Google Oprah and the Leadership Academy for Girls to learn more.

Congratulations, Oprah you are helping these girls shape their futures. You have also accomplished an incredible dream and life goal by giving back and in return you just know these girls will go on to really continue to pay it forward.

When you read my next update for example, please do not think I am crazy, rather keep my journey so far in mind and the reference I made to the Oprah story.

Here’s an update and video on what I’ve been doing to raise stroke awareness:

Watch my video

Check out our new patient advocacy group at PFOResearch.org