Exercise Guidelines for PFO Patients Needed

Know-stroke.org-Exercise Guidelines for PFO Patients Needed

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…

Learn More About Best Exercise Practices in my New Online Course WMU-101
Learn More About Best Exercise Practices in my New Online Course WMU-101

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….

Better Exercise Guidelines for PFO Patients

By David P Dansereau

For know-stroke.org

* 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.

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20 Replies to “Exercise Guidelines for PFO Patients Needed”

  1. My question exactly …. At my one-month post-op appt. today my cardiologist said I should wait another two weeks before I start back to my cardio regime (running, cardio classes, swimming, etc.). Initially, he said four weeks. The question is when does a person reach the point where there are no recommended restrictions for exercise?

  2. That is the million dollar PFO/exercise question Pam. I wish I had the answer for you but as you can see even your doc seemed a bit vague with your post-op exercise instructions. I did not go back to unrestricted exercise for almost a year following closure. I was working on restoring balance and stability and these are not exactly “high risk” activities. Because my post exercise instructions were also not that clear I went by what I learned in PT school about the rate of tissues healing. While soft tissue surrounding a joint may not be the same as cardiac tissue I did play it safe knowing that soft tissue injuries “or healing” need 12-18 weeks to fully “remodel”. In PT there is then a re-strengthening phase that goes in stages that often takes up to a full year to return a joint to full strength prior to when it was damaged. While this may be the extreme example, I decided I was not going to take a chance and blow my recovery with my most vital organ at risk. Those recovery guidelines I just outlined were my own and pls. take them for what they are worth but having that knowledge at least helped guide my own healing, both in my heart and my mind. I know you’ll also find out on the web other extreme examples where physicians are telling their patients it is safe to go running day 2-post-op. That’s why the medical community involved with PFO closure needs to do better educating and why we hope to get better guidelines established through our patient led group at PFOresearch.org
    Thank you for your question.
    David Dansereau
    know-stroke.org

  3. David,
    I too am in the medical profession, as a retired, R.N. No doubt, it has helped me immensely to be able to ask questions, logical ones, of what to expect post closure. I too, have been met with the same, ‘you’ll be able to go back to work in a few days with a few limitations, like lifting and the like…’ or, ‘you’ll need to take it easy for awhile…’ all the way to, ‘you reallly should not lift anything above 3 pounds for 4-6 weeks…’
    Then of course I was told, by my cardiologisit, of a 10 year old who had the PFO closure done, who, apparently felt well enough to shoot some baskets on day 3, and his device ‘popped out’ and embolized, and he died immediately… And, of course, he told me about the woman, who had her every 6 month echo for 1.5 years, then between the 1.5 and 2 year check up she had a stroke, and the echo revealed a huge scarring tissue in her atrium around/over and behind the implant. She had to have open heart to save her and get teh implant out!
    On teh PFO research foundation FB page, I read of patients with weekly migraines, marked chest pain for 1+ year post closure, and I am left with a sinking feeling…am I a desperate guinea pig?
    ‘If’ the >13 lesions on my brain are in fact stroke sites, why did the 1st neuologist phoo phoo the then 4 lesions as, ‘normal to have one for every decade of life’ (I was 42), one year later, and now 13+ lesions, I was told by my 3rd neurologist, ‘it could be MS, but, because you have a PFO, we have to make sure it is not strokes, from the PFO.’ Then neurologist #4 & #5, concurred, I am having strokes, likey passing emboli through my PFO…’
    I am presently scheduled for Feb. 11 for investigational cath as I am scared of the implant, and want the doctor to first look, and investigate teh secondary shunts, fix them, and then come out and reprot to me just how bad that PFO really looks. If he says, it is huge! well, i guess I will be scheduling a 2nd cath, for closure. (?)
    But, what does ‘return to work’ mean, when you are a mother of 5 young children, still home. (I can’t ‘leave’ work) My toddler will still have emergencies that need rescue. And, if doctors do not give explicit protocol for family members to have the right expectations, then everyone will think wife/mom should be back to business as usual. We have around 10-15 loads of laundry around here weekly. Is pouring a gallon of milk (8lbs) for my toddler, over the weight limit? Can i lift from above my head, and, if so, how heavy should it be? If I catch my kids throw up flu bug, do I need immediate phenergan to make sure I don’t put too much pressure on my new implant,due to massive valsalvaing? should I be in cardiac rehab? Stroke Rehab? What do I report? Should I be working with a PT to gauge my activity tolerance? the days are ticking down to Cath Day…and somehow I am suppose to submit to this implant being put in me, without knowing these answers. And, if you are being told you have had >13 strokes in the last 15 months, do you delay the procedure? And, ‘if’ I have really had >13 strokes, why am I not in stroke rehab?
    Michele~
    (43 y.o. Mother of 6, married 23 years)

  4. Im glad I found this! I’m 38 years old and just found out I have PFO. I’m an endurance athlete and plan to continue to be but…my question now is how far to I push myself? I do not plan to get it patched. I do have migraine symptoms and have been so bad, I did think I was having a stroke. My Dr is treating with an aspirin a day and has prescribed 200 units of Botox (yippee!).
    So, as my urge to improve and get faster hits me, I hesitate because I’m not sure how much to push. It terrifies me that everything I do to stay healthy could possibly harm me.

  5. Hi Dave,

    Thanks for the great information.

    Well, yesterday, I was officially diagnosed with a moderate to large PFO by my neurologist. You see in March I went to the local emergency room with a sudden onset loss of vision in my left eye, and a fierce headache. After the MRI it was discovered that I have some plaque in my brain. Eventually I made it in to see a neurologist who because of my job history (I am a retired u.s. army special operations soldier: green beret and Ranger) suspected that because I had been a scuba diver and had suffered many hard falls and blows to the head and body that I should have an electrocardiogram with Bubble Study. The results revealed that I have a moderate to large PFO. The films/images from my MRI revealed that I have around 20 spots of plaque in my brain. I am 52 and weight train 5-6 days per week. My workouts are tame in comparison to what I used to do but are nonetheless strenuous.
    I’ve done some research online and believe that the many devices that are available are not for me. So I will ask to have my PFO, if possible, to be closed non-device. What is the prevailing view on non-device closure?

    Thanks again.

    BJ.

    1. I am 50 and have a similar background — US Army Special Ops, Combat Diver, though I served only 4 years and returned to civilian life in 1985. I am very active. I train with weights and do strenuous cardio (eg 50-mile bike rides in under 2.5 hours) three to four times a week.

      I was just diagnosed yesterday with PFO. No clue yet how large.

      Please let me know what you learn(ed) and decide(d) to do (I do not see a date on your post).

      Thanks and good luck.

      1. Thanks for posting. My answers are” Yes and No “, Yes, I did have my PFO closed in 2007 and have had excellent results. I noticed you responded to a post about exercise guidelines, so the No is in response to the update on exercise guidelines post closure, unfortunately there are still No exercises guidelines post closure that would esp. apply to you as you are extremely active as you reported here. The MD recommendations are still all over the board, from return to exercise the next day to no heavy exercise for up to 6 months.
        I’d suggest you join in on the latest PFO conversations on our patient website pforesearch.org as well as sign up for our group on Facebook of you haven’t found us already. Hope this Helps!

  6. I just had the procedure done this week (5 days ago). I asked my doctor about the physical activity risks as I play tennis, volleyball and hockey. He indicated that the risk is that something or someone hits me and causes the device to move. Also the first month still has some risk around the incision on the vein/groin. The initial advice was no sports for 3 months. After discussing it in more depth, we agreed that I could start easy going tennis in a month, no hockey for 3 months and easy going volleyball in around 2 months (not sure about the volleyball). I can start some controlled cardio activity (rowing machine, bike, treadmill) right away (after 1st week) and light weights. I’ve been doing one hour walks this week and feel pretty good so far although I do get some moments of being light headed which subside when I rest.

    I appreciate everyone’s postings sharing their physician’s direction and their experience as this is breaking new ground.

    1. Hey Mike,
      Thanks for sharing. How are you doing almost now one year post closure? Would love and update especially since you hopefully have returned by now to playing hockey, one of my favorite games as well! I still remember feeling a bit uneasy the first time I went back to playing.

  7. Hi there! I was just diagnosed yesterday (via over the phone by a nurse who didn’t even know what a PFO is). They have set me up with a cardiologist that I will see next month. In the meantime I have just been searching for what all this means, what I can expect and so on. Needless to say, to keep reading all this info about increased risks of strokes is a bit daunting. I’m 35 yrs old, healthy, active, and only went in for some testing due to some heart palpitations that I have been experiencing off and on for the past year. I also workout six times a week doing HIIT training, Tabata style cardio, I run, I lift heavy weights, I am a BeachBody Coach so naturally I do all of the Beach Body programs I can get my hands on…P90X, Insanity….to name a few. Now all of a sudden I’m scared to death to continue my regimens. Like someone above mentioned in the comments….I’m afraid that the exact thing that I do to keep me fit and healthy is what will kill me. So all this just to say “thank you” for this post. It has armed me with questions and knowledge that I will have to lay on the table when I go see the cardiologist in May. Things that I otherwise would not have thought to ask or mention to him as a possible concern.

    1. Hey Nikki, SO sorry I missed this earlier! How are you doing? Mind sharing how you made out with your cardiologist? Hope you are on the mend and I would love to know (I am sure others here too would as well) if you are back to your workout regimens? Thanks for contributing!-David

  8. My husband was diagnosed w/ a PFO at age 60 after a left anterior thalamic stroke. He had a HUGE PFO which was closed with the “biggest toy in the toy box!” (around 25mm) The closure was performed in January 2004 and 10 years later, he is doing great. While he hasn’t run any marathons, he is active (treadmill/elliptical) and lifts moderate weights. We used a pediatric interventional cardiologist; our post op instructions..”he can jump on a trampoline the next day!” Yep, that’s what he told the pediatric patients. He actually did all of the clinical trials for the occluders and trained many of the MDs. That being said, there is virtually no information available for healthy (other than PFO’s) patients after this surgery. As a RN (> 24 yrs), it is ridiculous!! I had to call St. Jude Med today for information as the hubs is scheduled for surgery tomorrow (kidney stone)….no response i.e. “we do not have any information like that…” I asked for data/info if a cardioversion is required at any point… Thank you for this website..I thought it was me that was expecting too much!

    1. You are welcome and thank you for contributing to this important PFO conversation Sherry. We SHOULD expect more, but especially since you have all that great medical training as an RN it probably drove you crazy when you heard that from your husband’s cardiologist! You are certainly familiar with hospital medical policies and procedures to protect all involved and these fuzzy “guidelines” surely make you uneasy. Unfortunately, as many patients experience when it comes to PFO closure, the guidelines are still all over the place depending on who you speak to. Sadly, over 7 years since my own closure, PFO patients are still in the dark. It was my intention originally in starting this blog to make an impact for improved patient education as it was out of my own frustration with getting these fuzzy answers that I started to write about my experiences.

  9. Just found out I have a PFO, I will need to follow up with cardiologist. I am curious as to why some get closure and others do not. I am worried it I do not – I will live in fear of a stroke.

    1. Hi All, I am 31 years old and live in the U.K. I am a runner and do HIIT workouts 3 times a week too. On 11/12 I went to A&E with numbness to my left side and left eye, and was advised after my MRI scan that I had had ‘multiple strokes to both sides of my brain’. The echo showed a potential PFO, and I am now awaiting a second echo in contrast to determine this. I was discharged from hospital with medication.
      I’ve been doing lots of research into PFO closures and have come across your site, which has been so helpful. One of my immediate thoughts was ‘can I still run?’ And it seems there is no definite answer to this at the moment. I was due to do Brighton marathon in April which of course I won’t be going to do. Do people still do marathons post closure?

      I’m a little in the dark still at the moment, as I haven’t even had my second echo yet, but given I’m fit and healthy, it seems this is the likely cause for my stroke. Hopefully I’ll get more information once I’ve seen my cardiologist.

      1. Good luck Alison! My 2 cents-Stay active, it is your best medicine (but, of course follow your gut and your physicians orders as everyone has unique circumstances surrounding their own medical condition ). Please keep us posted! I ran the Boston Marathon several years post PFO closure and still run today!
        Go for it!

      2. Thank you David and well done on completing Boston! That definitely gives me some hope.

        I will hopefully find out more soon and will keep you posted

        Thanks again!

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