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
Know-Stroke.org receives Top Stroke Blog Award
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)
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David Dansereau
Fundraiser planned for 14 year old stroke survivor Tyler Perry of Cumberland
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
From Leigh Perry 11:16 am on August 2010
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
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David Dansereau
Tedy’s Team Corporate Sponsorship Available for Boston Marathon
Your corporation, individual brand, or perhaps a special message or product you wish to promote can now be advertised during the 2010 Boston Marathon. (Please note: We’ve made a slight modification from the video demonstration above to improve visibility for corporate advertisers. The corporate ad placement will be on the back of the actual running singlet as shown in picture below vs. the front and back shoulders on the long sleeve shirt shown in video .)
Click for my stroke awareness progress report and corporate donation sponsor form for the Boston Marathon here:
2010 Tedy’s Team Corporate Sponsor (Boston Marathon)
Corporate Sponsors can Receive Ad Placement at the Stoke Winner and Champion Giving Levels
Your tax deductible corporate donation can help me continue to reach my stroke awareness goals and help my sister cross the finish line in Boston 2010!
Click to DONATE NOW online!
Print and mail in your donation
If you missed my last video post on why I still need your help to spread stroke awareness please click here to play that video message.
Thank You!
David Dansereau for know-stroke.org
Leigh Perry, and 
Jewell are discussing. 
Jewell 10:32 pm on October 9, 2010 Permalink |
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.
Leigh Perry 11:18 pm on May 15, 2011 Permalink |
Ty doesnt drink energy drinks He just doesnt like them.Thank you for the idea though!Any advice,all advice is welcome TU