FDA approves Amplatzer


News announcement from FDA you’ll be interested in if you’ve suffered a cryptogenic stroke from a suspected PFO and need more choice for treatment.


Update to Recent Post: Long Journey to Improve PFO Patient Voice and treatment Options for Cryptogenic Stroke

Wow, I have personally spent lots of time advocating for this important stroke/PFO patient matter over many, many years but hard work has now paid off.  The FDA announced last week the Amplatzer is now finally approved for recurrent cryptogenic stroke treatment in certain PFO patients!

Congrats and recognition for the commitment from the original team of PFO patients (formerly PFO Research Foundation in the US) that I began this important advocacy journey on with together so many years ago. Thank you!

Read the FDA Notice:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm527096.htm

Take look back at my FDA testimony and this PFO journey background here:

http://www.know-stroke.org/a-long-journey-to-improve-pfo-patients-voice-and-treatment-options-for-cryptogenic-stroke/

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What a Journey !
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FDA Circulatory System Devices Panel Votes to Approve Amplatzer PFO Occluder


Post by David Dansereau,MSPT

Know-Stroke.org

On May 24,2016 I provided patient testimony at the Circulatory System Device Panel at the FDA along with Bray Patrick-Lake and Peggy Mahrt of the PFO Research Foundation and several other patients who also traveled to Washington DC to share their stories.

Bray Patrick-Lake, David Dansereau,Peggy Mahrt provided patient testimony at the FDA Circulatory Device Panel for Amplatzer PFO Occluder. Photo courtesy of PFO Research Foundation

 

I wanted to share my FDA  testimony and my story of why it may finally be time to change my Facebook profile photo in today’s post on know-stroke.org

David Dansereau of Know-Stroke.org
David Dansereau of Know-Stroke.org

King Wilder, 57, never knew he had a hole in his heart until he had a stroke


 Listen to this 911 call and share Mr. Wilder’s  chilling experience of what it feels like to be having a stroke and not be able to communicate.  It was later determined that the cause of his stroke was probably caused from a PFO (patent foramen ovale), or hole in his heart.

 

As shared by The Desert Sun

 

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Is PFO closure now a black hole for medicine?


-by David Dansereau,MSPT  Know-Stroke.org

I admit, I was drifting in thought as I watched the movie Interstellar with my boys over the weekend. The 2014 movie stars Matthew McConaughey who plays Cooper, an ex-pilot who must leave his family on Earth behind to lead an expedition beyond our galaxy through a black hole to discover whether mankind has a future among the stars. My boys love space movies and usually I am guilty of falling fast asleep between the two of them by 30 minutes in, but this movie kept me awake for nearly 3 hours.  I was thinking if I could speed up time like in the movie, where will PFO closure be 7, 15, 30 years from now? Also, if I could go back in time, would I elect to have PFO closure again?? PFO closure at one time early in my treatment after my stroke was described to me by a treating physician as a condition stuck in a “grey” area of medicine.  Unfortunately, I believe PFO closure, along with research into this area is now changing colors and drifting more from grey to black.  I wonder, does PFO research still have a place in medicine?

pfoblackhole_knowstrokeorgThe black hole

Beyond the issue of reimbursement which has been pulled into the black hole years ago, patients simply looking for best practices on managing a possible pathological PFO  have been left behind too long in the mission to explore and treat PFO’s. The medical community has mostly failed us (patients) by not defining a clear patient pathway.  Patient’s have united together over time to try to make a difference.  For example, there have been groups of patient’s that started the PFO Research Foundation out of frustration and lack of united efforts by the medical community to hear patient’s voices. I disclose I was once part of this patient group at the beginning.  Currently, however,  many of these patient efforts remain “under construction” like the vessel being constructed in Intersteller  in attempt to bring humans to a better place. There have also been many smaller, all well intended, social media groups that have entered the PFO galaxy trying to fill the void left by medicine.  Several PFO debate and support groups surrounding the condition have spun off from migraine and stroke to other possible related disorders.  All either lack anything new to report, or the ability to gather new  funding resources to lead serious PFO patient directed research groups like this forward.    At the same time, most physicians that remain in the PFO space continue to argue and take sides over best practices for management.  Either way, the PFO closure debate slowly is making almost no measurable progress and patients are still left to look to the internet for best practices, like Cooper did to space, for answers.  While some patients along with their physicians await FDA ruling, many physicians caught in the controversies that surrounds PFO closure have already made up their mind and stopped doing PFO closure procedures as reimbursement has dried up.   Some have  simply dismissed the option from the start, others are waiting and holding their opinions silent adrift in a black hole of sorts.

While we all wait, there has been some new data and PFO research analysis conducted by pooling data.  There are also a few international studies and groups slowly trying to collect, analyze and report new data.  I wish, however, as do many PFO patients waiting on the launchpad here in the U.S.,  that we could somehow rocket this effort forward much faster so we are not looking back like Cooper at a lifetime that has passed him by trying to solve a problem.

Best Home Stroke Recovery Tips


DavidDansereauAdvancePTMagazineThere are many great questions still coming in from my goal setting webinar for home stroke recovery.  If you attended the live event or rebroadcast and I wasn’t able to answer your questions live, I think I am now caught up and those answers are now in the members area.  Here’s one of the questions that was asked frequently in regards to best home stroke recovery tips to help get your body back in balance:

 

 

Dawn M. asked “What is the best way to regain proper arm and leg movements?”

 

Good question Dawn!

As I mentioned on the webinar, there is no ONE best roadmap to recovery.  There are lots of maps that can be followed, and you may need to follow more than one until you find what works best for you.  I mentioned my PTCMAP on the webinar because I find it is effective at getting patients to write down their goals and start to think about their recovery using a checkbook of sorts to get a starting point when restoring overall health balance. I’ve also had good outcomes with patients using BWSTT (body weight supported treadmill training) as well as FES (functional electric stim) for both the lower and upper extremities.  I provided a resource page for download on Goal Setting that also has links to articles I’ve written over the years on stroke recovery.  Refer to the article I wrote for Advance for PT called Simple Steps where I talk about some of these technologies in more detail.  Here’s the link

http://physical-therapy.advanceweb.com/Archives/Article-Archives/Simple-Steps.aspx

Finally, I’ll be gathering more questions from the rebroadcast until the end of this month and putting more resources together for you to help answer your questions.

Keep them coming!


 

ps– if you want to get on the stroke recovery webinar replay before it goes into our members area> Register Here

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