Flip Flops, Groin Kicks and Physicians without Heart have no place in PFO Patient CareBy David Dansereau,MSPTI 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,
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David Dansereau
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David Dansereau
Bruschi “Factor” could have Legendary Impact on Kids Stroke Awareness
“What impressed me the most about this story was what the students did on their own to help spread stroke awareness.”
-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 3rd 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
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David Dansereau
Does Stroke Awareness need a Better Color or a Better Sponsor??
October just wrapped up Breast Cancer Awareness Month, and you could easily find its signature pink color practically everywhere you turned. Here’s only a few examples of where I spotted the pink ribbons and the pink theme this past month. Cereal boxes, soup, popcorn and probably a dozen other items I could list if I looked more carefully in our family’s food pantry. Then there was the pink invasion in pro sports and in the media as well.
Tom Brady
Just about every football players in any Sunday NFL game you turned on TV as well as many baseball players in the MLB playoffs were all touting pink shoelaces and gloves.
If the color pink wasn’t found on the field, then they undoubtedly had a special hat made up with their team logo accented in pink or wore the “classic” pink ribbon pin during a key press moment either pre or post game. It had almost seemed as if you didn’t join the “in” crowd and wear a pink ribbon on whatever you’re wearing, you’d be left out as not supporting breast cancer awareness.
This is all a good thing, I can’t stress this enough. Breast Cancer Awareness is “on the ball” getting their message out BIG TIME and only gaining momentum year after year.
Hmmm…. How are they doing it and how can stroke awareness go BIG TIME too ?
I researched the origins of the pink awareness effort for breast cancer because I wanted to try to model their success to gain better awareness for stroke. As you know if you are reading this from my blog (know-stroke.org) I am particularly interested in gaining better stroke awareness for the young faces of stroke ( pediatric stroke awareness ) as well as when stroke presents itself in the case of a PFO (Patent Foramen Ovale). These are both areas where there is so much more work to be done and where I have been trying to make a difference. While I’ve been told I have already made an impact through my volunteer efforts, I can’t help temper my frustration when I hear about another young stroke victim that didn’t get immediate attention because his coach didn’t recognize the stroke warning signs. I get an equal measure of discouragement when our non-profit group, the PFO Research Foundation struggles to gain new sponsors to further fund our cause for better PFO patient education.
The Big Sponsor that helped Breast Cancer Awareness go BIG TIME
My research showed that Breast Cancer Awareness Month (October) is now 26 years old. I also discovered the color pink is a Big Pharma-funded effort, it was launched by pharmaceutical giant AstraZeneca. There also is some controversy regarding the pink campaign and if it is actually helping Big Pharma boost its bottom line and sell the company’s cancer drugs through improved screening and faster treatment delivery. Either way, it’s been a wildly successful awareness campaign for breast cancer and it appears obvious its presence has inspired many.My case for better stroke colors or a BIG TIME Sponsor
In the midst of all the pink in October, did you know October 29th was World Stroke Day? I bet if I asked ten people that question, not a single person could tell me that date or its significance. Indeed, a WORLWIDE Stroke Day for awareness and I could not even get my local paper in town, The Valley Breeze, to print a public service announcement to inform readers of the stroke warning signs (here’s my post on this topic). I was told by the editor, Tom Ward, that there simply was not enough room to honor my request because there were too many political ads to print prior to the Nov 2nd general elections.
I received this information ahead of the paper’s release this past week and while I was not expecting to see my stroke PSA in print I honestly also wasn’t expecting to see the front page and a second page (p.29) in the paper both showing pictures of a pink fire truck that came to our town to promote breast cancer awareness. As I mention in the title of this post, I think I may be on to something, because I think our stroke colors may be all wrong. My theory: Would better colors, or brand awareness, attract more attention to the stroke awareness cause? Unfortunately, I believe it is more complicated than simply having the wrong colors.The issue of stroke survivorship (and media coverage) often takes a different path when compared to the successful cancer awareness efforts. I’d even suggest the color might not matter, just for argument, think yellow wrist bracelet and what do you think of, Lance Armstrong/Livestrong/Cancer. I think for a good explanation of why stroke awareness just doesn’t “pack a punch” in the media you should read a recent article in the Baltimore Sun by Kris Appel. The article is entitled, “Bringing Stroke Out of the Shadows” and it discusses how shame and lack of attention still surround this disease. This is a great article both for stroke survivors and the general public. Miss Appel’s article ends with “But until we become comfortable with the idea of stroke and are willing to talk about it, to acknowledge its toll on this country, it will remain in the dark”. How fitting, right now I believe our stroke color needs to change, because you can’t see color in the dark.
[Personal Sidebar] To end my week full of color, I guess you could say, take one guess what color my daughter picked out to have (me) paint her room this past weekend? You guessed it, pink.
photo by David Dansereau for know-stroke.org
Article by David Dansereau
know-stroke.org
David Dansereau (Know-Stroke.org)
David Dansereau
Will VH1 show Bret Michaels’ PFO Closure?
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
carol Marler, and 
Brad are discussing. -
Brad
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carol Marler
I want to know how he is getting to get this surgery. I have been in need of this surgery and have been told by several cardiologist that the FDA has it on hold and no one can have it!
David Dansereau
Perhaps PFO needs to be better recognized as a “Syndrome” to get equal treatment
“After all, accurate diagnosis and treatment of plica in the knee, or “plica syndrome”, has an accepted surgical option after conservative treatment and medical management has failed.”
–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:
David Dansereau
PFO Research Foundation Releases Results of First PFO Patient Survey
Follow this link to the PFO Research Foundation to view the survey results
David Dansereau
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
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.
Michele, 
Pam are discussing. -
Pam
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?
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David
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
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
PFO Patient Survey Update
The first ever PFO Patient Survey is now closing in on nearly 200 completed surveys! Thank you if you have already taken a few minutes of your time to complete this important survey. We still need your help, so if you have procrastinated a bit and said “I’ll get to it later” now is the time to check this important task off your list.
Our group needs your help now. PLEASE give us your input here:
David Dansereau
PFO Patient Survey
PFO RESEARCH FOUNDATION
Launches First Patient Survey
We want to hear from you! Please take a few minutes to help us learn more about the PFO patient experience by taking our first PFO Patient Survey.
This survey is only for patients diagnosed with patent foramen ovale (PFO). If you have a PFO, your answers to this survey could help other patients and the medical community alike to understand how PFO’s are being diagnosed and treated.
David Dansereau
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
Jeannie is discussing. -
Jeannie
Thank you for your informative article. I’m beginning to re-think my medical advice about my PFO
It’s not necessary to broadcast a procedure that might not even be beneficial.