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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:
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”.
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:
If you experience any of the following symptoms, or those listed in the IMPORTANT WARNING section, call your doctor immediately:
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 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:
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.
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.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000634#a682277-sideEffects
Know-Stroke.org
The PFO Research Foundation (PRF) was formed by patients for patients and is supported by leading experts in the field of PFO medicine.
Learn more about The Foundation.
Know-Stroke.org
Should all young athletes in the US have their hearts screened?
They do in Italy. Why not here?
by David Dansereau for know-stroke.org
My guess is you’ll hear more about this debate on the nightly news this evening and in the days to come. That is because two studies published yesterday are reigniting an emotionally charged debate about whether young athletes should be screened with an $88 heart test to possibly reduce the small risk of sudden death from an undiagnosed heart problem. This debate also follows the recent death of two young athletes who died from sudden cardiac death. (They were Chicago Bears defensive end Gaines Adams, 26, and Southern Indiana basketball center Jeron Lewis, 21, both presumably from sudden cardiac death).
[Personal Sidebar: Screen all our KIDS involved in sports! While this debate continues, educate our coaches, parents and teachers how to respond FAST in the event of an emergency (stroke or cardiac arrest) from a heart defect. If I had been screened as a kid, I may not have had my 1st (or 2nd) stroke!! ]
Here’s all the headlines from today and links to the full stories:
Study: EKGs for young athletes cost-effective
Ask Dr. H: Young athletes and sudden cardiac death
Studies spur debate on heart tests for athletes
$88 scan detects deadly heart defect in athletes
Screening athletes could prevent sudden deaths
You are not running, why should I donate?
If you have considered that it would still be the right thing to do but then clicked away, I’m here on video to remind you of why your donation to the American Stroke Association is important. If you have donated to my fundraising and stroke awareness efforts in past, I sincerely thank you again. I look forward to your continued support. I appreciate every penny that comes in, especially in a difficult economy. You can help make a difference. Every donation counts. I hope you have been helped by my blog at know-stroke.org, and now is the time for you to step up. It has been my intent from the start that through putting my story out there I might further educate others about their own condition. In doing so I have been blessed to get to know many of you personally over the phone and many have expressed thanks and stated they will become more informed in their local community to spread awareness. That is terrific! If you play my video you’ll see why (more than ever this year) I’ll need your help. That’s right, if you’ve already played the video, you know a knee injury has forced me out of the Boston Marathon this year. Even so, I can run the marathon in spirit with my sister and continue to move forward with my national stroke awareness campaign.
Please play the video and read my attached campaign summary and stroke awareness update I have prepared here> knowstrokedotorgprogressreport . I’ve also included a print version of my fundraising request form if you would prefer to mail in a donation here> 2010BostonMarathonPrintDonationForm.
You can also donate right now through our secure online donation link. Donations to the American Stroke association are tax deductible. You’ll see when you click the link, my wife and I have started off the donations by showing our support for my sister Lori through a $150 dollar donation (or $50 each) to honor each of our three children.
Corporate Donors can Cross the Boston Marathon finish line too!
In my next post later in the week I’ll update you on how top corporate or individual donors can get their logo or brand visible and cross the finish line with my sister. So, stay tuned and THANK YOU!
Best Regards,
David Dansereau
Know-Stroke.org
Article reviewed by David Dansereau for know-stroke.org
A new study published in the January issue of the journal Health Promotion Practice may indicate that stroke-related disability could be reduced by teaching children how to spot the signs of stroke in relatives and to call 911 immediately.
Emergency medical treatment within three hours of the first stroke symptoms can limit the extent of brain damage and lead to better recovery.
About the study:
The Kids Identifying and Defeating Stroke (KIDS) project included 515 sixth graders in Texas who were divided into two groups. The students in the intervention group were given four classes about stroke awareness each year during grades 6, 7 and 8.
“As part of the KIDS project, students were also given homework assignments that involved teaching their parents or other adult partners about the signs and symptoms of stroke and the need to call 911 right away if these signs are witnessed,” lead author Kathleen Conley, a professor of health education at Eastern Michigan University in Ypsilanti, said in a recent news release.
Assessing Stroke Knowledge:
A pretest about stroke knowledge/awareness was given before the study. Preliminary results from a follow-up test after the second year showed improvements in the intervention group students’ knowledge and their intent to call 911 when seeing someone suffering a stroke.
“We are very encouraged by the results and would like to see more investigation in the area of teaching children about recognizing stroke and motivating them to call 911 immediately,” Conley said.
[Personal Sidebar]
This study gives further evidence for the need for my national stroke awareness goal to produce and make available a stroke PSA video targeted to coaches/parents, educators involved with student athletes.
Here’s a summary of my stroke awareness goal :
The AHA/ASA* and/or NSA** should have a sports related coaches/parents training video (available nationwide) to target adults in contact with young student athletes to improve recognition of ALL the stroke warning signs. This video could easily be linked to every sports program in the state/nation as part of that programs sports website/coaches sign up/parent registration section.
Anyone with talent, time and the desire….Please help me do this.
If you can help please contact me now (401)632-0868
*American Heart Association/American Stroke Association
** National Stroke Association
Thank you Kathyrn for your article today on Tedy Bruschi and for giving some well deserved credit to a real leader and a true hero for the work he does on and off the field. Many still don’t know about Tedy’s commitment off the field and the work he does with Tedy’s Team and the American Stroke Association. ps-Keep up the hard work Tedy, keep the faith, keep the focus and Never Give Up!!! There are too many stroke survivors counting on you.
Read Kathryn Tappen’s full article here on Tedy Bruschi posted today on NESN David Dansereau Stroke Survivor Member of Tedy’s Team http://www.know-stroke.org
I know this is a start but we need to do more to raise stroke awareness. I was contacted on my blog today by AGA Medical letting me know of their new stroke awareness campaign. Congratulations, this is a step in the right direction, but it is something we should have started years ago. Here’s what they wrote,
“Thanks for your work on stroke awareness with Tedy’s Team. I know you are familiar with AGA Medical Corporation.
We have just launched a new stroke awareness campaign called TacklingStroke on Twitter, Facebook, and YouTube. It features video testimonials from professional football player Tedy Bruschi, who had a stroke in 2005, recovered fully, and was able to resume his career.”
The post references a video link to Tedy’s PR piece about the stroke warning signs, but the FDA still prohibits AGA Medical from mentioning the word PFO. Here’s the video, it is the same one that has been on AGA’s site except now you view it on YouTube:
http://www.youtube.com/user/TacklingStroke
Bottom Line:
We need to do more by getting out there and educating in our schools, so our teachers, coaches and youth know stroke warning signs. Tonight I’m at Lincoln Middle School doing just that. If you think I did A good job, post your comments here. If you think I can improve, I want to know more. If you want to help with my goals, I’ll take that too!!
Drop me a line, I don’t bite….
WOW!- I know, I used the word sex and “the other “s” word” together- I can explain…
I mentioned in my last post I’d be following up with more information on the emerging technologies available to enhance stroke rehabilitation outcomes. Well, this post as you can tell from the title is not about stroke rehab directly, (although many stroke survivors might argue that sex would be the most enjoyable and welcomed component to any therapy plan of care).
Anyway, my point in including this post here is that it confirms my suspicion when you add those three little letters together to form the word “sex” it certainly pulls readers in to any headline and grabs attention.
The proof: I’ve never seen more bloggers post on any one single stroke related topic in a given week, than this past one, EVER.
Here’s only a few of the recent headlines:
Jeannie is discussing.
“Holy ^@#~ ! “ A stroke from Sex
35yr Old Woman has Orgasm Related Stroke
When Sex Leads To Stroke
That’s enough- I think you get my point….
Unfortunately, the rise in attention recently for stroke awareness came at the expense of a 35-year old Illinois woman. She, too, at the time probably didn’t realize that sex with her boyfriend could trigger a life threatening stroke that temporarily left one side of her face numb, slurred speech and weakness in her left arm. While her physician treated her, it is reported he was puzzled to find that his patient did not “fit the profile of a typical stroke sufferer”. This stroke survivor is a young, healthy, non-smoking woman with no known cardiovascular risk factors.
Her doctor acted FAST…
Her physician found it too late to inject her with tPA, a clot-busting drug that must be administered within three hours of a stroke. In what was reported as a risky decision, he ran a catheter from an artery in the groin to her brain, applying tPA directly to the clot. Her symptoms improved almost immediately and within an hour she was out of danger and is reported to be well on her way to a full recovery.
Why did I add my first post on sex and stroke?
Well, I can assure you it was not to grab headlines, Sarah Palin is still leading that category these days. This unfortunate incident did remind me of a topic that wasn’t discussed much during the management of my PFO or during my own stroke rehab. Yes, sex. Is it safe when you have a PFO or other similar known heart defect?
So, to get to the answer (maybe) let’s look at what was the reason for the recent headline grabbing “stroke after sex” which perpetuated a blogging frenzy As a rule, sex and orgasm triggered strokes are rare in young men and women, though not unheard of. For such a stroke to occur in a relatively young person, experts still argue that it perhaps requires a combination of factors and events, not unusual in themselves, but extremely unlikely to occur at the same time. One variable that seems to be consistent in the cases that have been reported involving young people who (were brave enough to tell the truth) had suffered similar sex related strokes, is that they all had a small opening in the wall between the two upper chambers of the heart, as was in the case of this young Illinois woman. This minor heart defect or opening, called Patent Foramen Ovale (PFO), as you can read more about throughout my blog, is found by many reports to be seen as frequently as in one in four adults. Such an opening allows some blood to flow from the right to the left side of the heart, bypassing lungs only to go straight to the brain. As there are no symptoms, most people with PFO do not know they have this heart defect. It has been reported that 40% of people suffering a cryptogenic stroke ( i.e.) a stroke with no known cause, have been found to have PFO.
Is sex the culprit?
It is well reported that strain can cause increased blood flow through a PFO. For example, the strain of bearing down during a bowel movement, strain of breathing out of a shut mouth or holding a breath, and strain during sex, particularly during orgasm,. Experts will mostly agree strokes are not caused by PFO’s alone, there must be a small blood clot present, which must break free and enter the heart, then cross over and bypass the body’s normal “pulmonary filter” instead traveling through the PFO then up to the brain. Normally, the rule of thumb is that small blood clots stuck in the lungs dissolve, but a blood clot that passes through a PFO lodges itself in the brain and causes a stroke.
Again, with the Illinois woman serving as our own case study here, this young patient suffered a headline grabbing “sex-related stroke” because of her PFO. It was also reported she had a small blood clot in her leg, the possible side effect of oral contraceptives taken for birth control. Doctors generally still report that a vast majority of people with PFOs, often go through life without any problems, and while the risk of stroke during sex must be kept in perspective, the risk is low if you consider the chain of events needed and presented in this post. Fortunately, according to stroke experts, sexual intercourse, in itself, is not likely to trigger a stroke without accompanying risk factors.
So, now l can get back to writing and researching for my next post of emerging stroke technologies and hope to have that available soon. In the meantime, please use the recent sex and stroke buzz to be reminded that strokes occur all year long, just not during Stroke Awareness Month in May. In fact, here are the stats:
The most common risk factors for stroke in young people are those linked to migraines, drug use, coagulation diseases, or athletic injuries that cause trauma or injury in the blood vessels, especially in the neck. Even with these risk factors, the chances of a young person suffering from stroke are extremely small but that is no reason to be ignorant of the warning signs. As I’ve been saying all along, there are young faces of stroke and you should know what they look like. Be prepared and get help fast. Know-Stroke!
As one stroke campaign says well, “Time Lost is Brain Lost”
Until next time-
Written by David Dansereau
Jeannie 3:14 am on July 14, 2010 Permalink |
Thank you for your informative article. I’m beginning to re-think my medical advice about my PFO