 |
|
 |
 | Samantha on Share Your Story |
 | Beth on PFO, patient identification ca… |
 | Julie L. on Share Your Story/Contact … |
 | CindyW on Share Your Story/Contact … |
 | Kristy B on Share Your Story/Contact … |
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,
|
|
|
Thursday, December 9, 2010 4:00 PM – 5:00 PM ESTRegister |
Thanks to LicensedPracticalNurse.com for recognizing my work in writing my know-stroke blog and for including it as an essential resource on their site to educate their visitors about stroke. Please stop by their website to see the other top award winning stroke blogs for 2010 that were honored as valuable stroke rehab and recovery resources.
David Dansereau (Know-Stroke.org)
A report released earlier today by Reuters showed a correlation between high arsenic levels in a Michigan district’s drinking water with a nearly two-fold increase in stroke risk for that area studied. While this is only one study it is an area that is of particular interest, not only in Michigan but especially in many areas throughout the nation with older cities and aging water delivery systems.
If you’d like to find out what is in your local water supply, I suggest going to a reputable site developed by the Environmental Working Group (EWG), a DC based non-profit that has compiled a great resource of almost 20 million records obtained from state water officials to make it easier for you to find out ” What’s in Your Water?“.
Interestingly, throughout the country, EWG’s research has found 316 chemicals in tap water and many of them are going unregulated. Go here to check your water source by zip code: http://www.ewg.org/tap-water.
Here’s more on this water quality resource:
EWG’s searchable database of water test results allows the public to check out the quality of the water in their community, and EWG researchers have also compiled an easy-to-use guide to water filtration systems currently on the market, giving consumers some help when deciding which one works best for themselves and their families. Again, go here http://www.ewg.org/tap-water to check your water quality.
To learn more about the arsenic level in Michigan water and increased stroke risk reported here, go to the Reuters article :
Arsenic in drinking water tied to stroke risk by Amy Norton Reported by David Dansereau Know-Stroke.orgDavid Dansereau (Know-Stroke.org)
Do Politicians in Cumberland RI Know Stroke?
I certainly hope so and perhaps they will include the stroke warning signs in their political profiling and typical canned candidate sound bites * in the Valley Breeze because the importance of knowing the stroke warning signs have apparently taken a back seat to politics, at least for “one more week”.
Here’s what Tom Ward, publisher of the Valley Breeze had to say in response to my request to print a PSA (public service announcement) in our local paper about knowing the stroke warning signs.
Show quoted text -
“It will not be printed next week. We are hip deep in political stuff for one more week. After that will be fine.”
Thank you.
Thomas V. Ward, publisher
The Valley Breeze
Show quoted text -
Valley Breeze;
“I was disappointed to learn that my reply to the recent editorial by Sharon Coyle which appeared in the Breeze on pediatric stroke was not included in your publication this week. I hope that next week you might consider publishing this in the Valley Breeze to help educate readers (especially in Cumberland) about knowing the stroke warning signs. Thank you for considering this request”.
David Dansereau
Know-Stroke.org
Cumberland RI
Know-Stroke.org
When it is more convenient, or a light coverage week, perhaps I’ll have better luck with the local media. In the meantime, I’ll keep at it*, but you don’t have to wait a week or more for a review because here’s what you should know now:
Learn the FAST test to help identify stroke warning signs .
• Face: Ask the person to smile. Do both sides of the mouth elevate equally?
• Arms: Ask the person to raise both arms. Do both arms lift equally?
• Speech: Ask the person to repeat a sentence. Can they repeat? Are the words slurred?
• Time: If the person shows any of these symptoms, call 911 or get to the hospital FAST.
It should be pointed out that there’s some controversy about the FAST test. The FAST test is great because it is simple but it leaves out a few more subtle but important signs a stroke or TIA (transient ischemic attack) or “mini” stroke may have taken place. Here’s a link to a previous post about this controversy if you want to know more…
Bottom line:
Know as many signs and symptoms of stroke as possible. Initiating treatment FAST is vital because time saved is neurons saved. Every minute during a stroke an estimated 2 million neurons and 14 billion synapses die. Delays in treatment lead to brain loss which make the road back to recovery more difficult if time is wasted. Never assume the victim is “too young” to possibly be having a stroke. The Coyle’s story from Cumberland as well as the unusually high incidence of stroke in town is proof there are young faces of stroke and regardless of the age, you must LEARN FAST to be able to act FAST to save a life.
*Did you know??
According to the RI State Plan for Heart Disease and Stroke Prevention (p.25), the goal set by the state is – “By 2012, 18% of Rhode island adults aged 18 and older will know the four warning signs of stroke as described in the FAST campaign, including the importance of calling 9-1-1.” That’s right, 18%! So, if the goal is to get to 18%, I have to ask, where are we now?? Clearly, we are not getting this message and the media is certainly not acting FAST!
Perhaps one of our politicians up for election can start their next sound bite by saying something like ,
”If (re)elected I’ll lower property taxes, fight to reduce state spending, protect social security, and fight for all Rhode Islanders to know the stroke warning signs and act in time to save a life”.
Article by David Dansereau
To read Shorn Coyle’s original letter published in the Valley Breeze go here
Source: fda.gov
AUDIENCE: Primary Care, Consumers
ISSUE: Abbott Laboratories and FDA notified healthcare professionals and patients about the voluntary withdraw of Meridia (sibutramine), an obesity drug, from the U.S. market because of clinical trial data indicating an increased risk of heart attack and stroke.
BACKGROUND: Meridia was approved November 1997 for weight loss and maintenance of weight loss in obese people, as well as in certain overweight people with other risks for heart disease. The approval was based on clinical data showing that more people receiving sibutramine lost at least 5 percent of their body weight than people on placebo who relied on diet and exercise alone. FDA has now requested market withdrawal after reviewing data from the Sibutramine Cardiovascular Outcomes Trial (SCOUT). SCOUT is part of a postmarket requirement to look at cardiovascular safety of sibutramine after the European approval of the drug. The trial demonstrated a 16 percent increase in the risk of serious heart events, including non-fatal heart attack, non-fatal stroke, the need to be resuscitated once the heart stopped, and death, in a group of patients given sibutramine compared with another given placebo. There was a small difference in weight loss between the placebo group and the group that received sibutramine.
RECOMMENDATION: Physicians are advised to stop prescribing Meridia to their patients, and patients should stop taking this medication. Patients should talk to their health care provider about alternative weight loss and weight loss maintenance programs.
Read the MedWatch safety alert, including links to the FDA Drug Safety Communication, Q&As, and News Release, at:
I hope that you might take the time to help out and support the family of 14-year old Tyler Perry, another recent young local stroke survivor in our community. While the family still does not know what caused Ty’s stroke (see his mother Leigh’s prior post included below here) they are, like the families of other stroke survivors, faced with many unexpected bills and treatment expenses that are not covered by insurance.
For this reason, a fundraiser is being planned for Thursday, September 23rdfrom 5-7 pm at the fraternal order of Police Lodge in Cumberland, RI. I’ve attached the brochure that provides more information about this event to learn how to purchase tickets or make a donation. The event is being coordinated by Jean Lermer at Dave’s Market ( Bakery) in Cumberland, RI.
I ask that you please do what you can to help Tyler and his family during this difficult time. Even if you can not attend the local event but frequent Dave’s Market, pls. stop by the Customer Service desk at Dave’s to donate.
Thank you!
David Dansereau
My son Tyler suffered a stroke at the right MCA territory. Unlike your strokeTyler was checked for a PFO and his heart showed no abnormalities. This being very good news, he was examined for anything and everything else under the sun. At 14 years old, Ty ‘s situation baffled the doctors and I guess you could say “annoyed” them too. It was a very frustrating time for Ty and the doctors because they were concerned with finding the source so that there would be no “repeat offender”. We spent two weeks at Hasbro (WONDERFUL) hospital where numerous tests were done and then we were finally released to Spaulding Rehab in Boston with the medical exams to continue under the Mass Genneral Stroke team. Again I can’t say enough about the care we received! Unfortunately for all, the source of this unfortunate incident was never fully discovered and now we are both back at home working hard in three different therapies (why they are not fully covered for situations like this is beyond me!) but he has done remarkably well with his own determination, lots of care and advice and support from everyone. We have learned alot and still need to learn more so any advice or ideas from others is absolutely welcome!
Thanks for the book David! Sincerely Leigh Perry-Ty’s proud mom
Ty doesnt drink energy drinks He just doesnt like them.Thank you for the idea though!Any advice,all advice is welcome TU
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
Thank you for your informative article. I’m beginning to re-think my medical advice about my PFO
“Slurred speech, droopy left eye, stiffness, a sudden inability to walk or even stand on his own: if an adult had come into an emergency room with similar symptoms, the staff might have quickly picked up these classic signs of stroke.” But this patient’s name is Jared and he was 7 when he had his stroke. Read Jared’s story from Star News Online as reported by JONATHAN DIENST/ Published: Tuesday, January 19, 2010
Consider these brief facts:
(from the full story if you don’t have time to read more about Jared right now:)
“The rate of pediatric strokes has been growing in recent years, partly as a result of increased awareness and better reporting. Experts at Children’s Hospital of Philadelphia estimate that the rate in children under 18 is as high as 12 per 100,000, or about 9,000 incidents a year. And in newborns, they put it at 25 per 100,000 — a rate approaching that of elderly adults.”
“Time is brain,” doctors like to say, when it comes to treating stroke victims. Yet in pediatric stroke cases, studies show the average diagnosis does not take place until more than 24 hours after the onset of symptoms.”
__________________________________________________
Too often, experts say, a stroke in a child will be missed. It is in part why Jared agreed to let his father share this story.
Leigh Perry, and 
Jewell are discussing. 
Jeannie is discussing. 
I am curious if Tyler drank energy drinks? There was just another 14-year-old in our area this week that suffered a stroke…but it seems that she was more fortunate than your son and is back to playing sports already. Just a theory.