I 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,
“Always keep an open mind, and even more importantly, an open heart.”
The PFO Research Foundation recently met in Washington, DC for its first PFO Summit. I attended the event and was hoping for both practical and selfish reasons to get some clarity on exercise guidelines from some of the world’s top authorities on PFO. Instead, what I learned in one of the breakout sessions aimed at developing better guideline documents and educational materials for patients with PFO disorders is that we have a great deal more work to do to get better patient information out there. I reference a recent post to my blog from Sept. 28, 2010, at know-stroke.org to illustrate this point:
“I just found out I have a PFO after a cerebellar stroke and ministroke in 27 months. I am 45. Should I be scared to do cardio, how much, how long, what should I avoid? Thanks Dave, I appreciate reading something from someone who seems a lot like me.”
What should this person do? Known PFO, positive TIA/stroke and would like to continue exercising/working out. Is cardio fine? Are weights OK? What about swimming? Climbing at altitude? Diving? We know these situations may present increased risk but where do you draw the line?
Patients are turning to the web and patient forums for guidance clearly because they are not getting answers from their physicians or device manufacturers. It’s simply not enough to tell patients “you can’t avoid the valsalva maneuver*” in daily life. No kidding doc, really? Is that the best advice we can give?
I learned “off the record” after running a marathon that perhaps (running long distances) was not the best decision for me “down the road” with a PFO occluder on board. This inside information was shared with me by a physician recently after my primary cardiac physician had cleared me and stated after more than one year post PFO closure “if my legs could carry me that far and my brain was crazy enough to talk my body into 26.2 miles then my heart would be fine”. OK, so, what is safe? What should PFO patients be doing for exercise (or not doing) 1-3 weeks after closure? How about after 6 weeks? What is really so special about 6 weeks? Why not 1 year (or more)? Should every occluder device have its own post-op protocol based upon the design? Perhaps. What about exercise guidelines for known PFO/stroke confirmed without closure like the recent post on my blog I illustrated above. What about known PFO, no stroke, no closure but enrolled in clinical trial related to migraines? What about guidelines for that same patient sent home on meds or following sham closure procedure. Follow me?
[Personal Sidebar] I had contacted the device manufacturer that built my heart plug several years ago after I had PFO closure. I asked them, -NO-I challenged them to get their patient education website completed and build a useful patient resource to assist patients that were in my shoes. That was well over 3 years ago. The result: Still no website for patient education. Nothing. I’m still waiting…
Who’s to Blame??
Blame the FDA, insurance companies, poor clinical trial enrollment, whatever excuse we want to make, this is certainly not “best medical practice”, it is not acceptable and is in fact poor medical practice. As a practicing physical therapist, if I sent someone home after a total hip replacement and didn’t remind them that there were clear post operative hip precautions that they should be aware of following their procedure (and based upon the technique and specific device they had implanted in their body), I could be fired and sued if they went home and blew out their hip because I didn’t educate them. That is simply part of my job! Why are heart plugs different? The last time I checked they were still being inserted directly in the center of our most vital organ.
“Patients can’t continue to afford to be the pigs here. Patients are literally putting their “hearts on the line” and deserve so much better. When I ran the Boston Marathon in 2009 I didn’t recall any pigs passing me with a clinical trial advertisement on their bib.”-DP Dansereau
I certainly hope this post serves as a challenge to industry and physicians to be more responsible and get our collective acts together to set things straight for patients. At least that is why I continue to write this blog, and yes, industry, this blog creation was and remains my direct response to your failure to step up and do something. Truth is, I write most of my content on lunch breaks and late on Friday evenings after my responsibilities as a dad and business owner are complete. (This is at least my excuse why I frequently have typos in my posts.) I write this blog because in some way it helps patients ask more educated questions and hopefully make their medical care takers stay on their toes, at least that’s what I’ve been told. I have no financial disclosures to report, don’t know any venture capitalists, and have no potential gain if PFO closure proves to be a slam dunk for stroke prevention or migraine relief. I just own the peace of mind that I did something. Now, I must get back to my patients, and then perhaps go out for a run later this evening when I get done here at work.
Or should I ? Who knows? I’d love for you to comment here if you do….
* Valsalva maneuver:A maneuver in which a person tries to exhale forcibly with a closed windpipe so that no air exits through the mouth or nose as, for example, in strenuous coughing, straining during a bowel movement, or lifting a heavy weight. The Valsalva maneuver impedes the return of venous blood to the heart.