PFO, patient identification cards and fish tanks?


Sometimes when you speak the truth it can get you in trouble.   Let me explain.  I’ve been digging a little deeper lately trying to get some answers to the ongoing question of  PFO, septal occluders and exercise.  Completely for my own benefit of course,  but if you have been following my posts you know I am not the only stroke survivor with a septal occluder patent that is googling for help.  Let’s just say for now, I am thinking of boosting my exercise level and need to know if it still “OK” especially with recent rumblings of device erosion.   Anyway, you may be thinking I shouldn’t need to google for help, right?

The answer as it turns out is not that easy.  I have this patient identification card that identifies me as an official recipient of a septal occluder married now to my ticker.  With my card  I received a one page letter that states  “Dear Recipient:” (that’s me)

Enclosed please find your xxxxxx Occluder implant registration card.  Please keep this card with you at all times.  This card will notify medical staff of your implant in case of  medical emergency, and provides a contact number for us to reach you in case additional information might be needed for your care.  Below are some commonly asked questions about your device:

(skipping to the part on exercise or as close to the part that mentions any physical activity guidelines)

Q: What activities should be avoided after my procedure?  When can they resume?

A:  All strenuous activity should be avoided for one month after the procedure.  Even though you may feel ready to resume your normal activity, you should take it easy for at least one month.

I needed more information so I called the toll free number on my PFO Patient Identification Card.  What I quickly learned was “they (the device manufacturer) don’t set the guidelines, they just make the device”.  I would need to “speak with my physician who implanted the device”.  Honestly, I am not feeling comforted by the device support line these days especially after reading more about PFO device erosion.    I am suppose to feel better after speaking with my physician and having a long discussion about erosion that I have a “good” device.  Frankly, I don’t know what that really means because there is clearly  an accountability problem that needs to be addressed.

Bray Patrick Lake of the PFO Research Foundation posted a great article on better accountability in this industry.   I hope we figure this thing out soon, I don’t want to get a call  “in case any additional information is needed for my care” just because I want to be more active.  I’ll tell you soon how this truth might be getting me in trouble  but for now read Bray’s article on why her fish tank/water heater may be currently better regulated than the individual devices that she and this author have patent.  That’s a shame.

David P. Dansereau for know-stroke.org

David Dansereau at Know-Stroke.org

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PFO and Cryptogenic Stroke:Another Runner Shares his Story


Following this story
Medical Mystery : The Runner who lost his voice
http://www.nationalpost.com/m/blog.html?b=life.nationalpost.com/2011/09/20/medical-mystery-the-runner-who-lost-his-voice&s=Opinion

“Upload” more Brain Power? Is this the future of Stroke Rehab/Recovery ?


While researching emerging technologies for brain recovery as part of my new book, I started following the work that the MIT Media Lab is doing especially the work of Ed Boyden a biological engineer and brain and cognitive scientist.   If you have the time go watch the video he did for TED below, this is really interesting work.

Some of the concepts in this video could push the envelope a bit and change how we feel about what age the brain fully develops and how we can perhaps some day “upload” more brain function to ward off decline and perhaps correct insults.

By the way, if you took our poll and  just want the simple wiki answer to the brain development poll from a previous post then here it is:

Answer:
Scientists say that the brain is fully developed and matured in the late teens or early 20’s, depending on the individual. The average would be 21.

By the Way:

I Just learned that the University of Rhode Island is hosting an upcoming Honors Colloquium beginning later this month called “Are You Ready for the Future?”  Go to http://www.uri.edu/hc to learn more.  Ed Boyden is one of the invited guests.  If you aren’t planning to travel to Little Rhody you can see all the lectures as they will be streamed live and archived.    I might just make the drive back to my old school to see this one “live”.  See the schedule of events, it looks good.

David Dansereau for know-stroke.org

David Dansereau at Know-Stroke.org