Tagged: stroke recovery RSS Toggle Comment Threads | Keyboard Shortcuts
-
David Dansereau
-
David Dansereau
Flip Flops, Groin Kicks and Physicians without Heart have no place in PFO Patient Care
By David Dansereau,MSPT
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.” -
David Dansereau
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…
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
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.
-
David Dansereau
Stroke Recovery Training Takes Time (and Hard Work!)
This challenging full body lunge exercise provides great balance and coordination retraining follow a stroke
Post by David Dansereau for Know-Stroke.org
This is one exercise I sometimes still visualize in my sleep and continue to work on to improve my balance post stroke. I’ve since been able to give it a boost by trying it with heavier weights, with my front leg on a Total Gym glideboard, and at times even successfully with my eyes closed.
Use caution and modify to your level of fitness / rehabilitation when needed*
Intensity Level: Moderate Difficulty with disc as shown
Lunge with Balance Disc
1) Stand with feet hip width apart. Take leg and step back approximately 2 feet standing on the ball of the foot. Place the front foot on a balance disc (or use the floor without disc for beginners).
2) Start position: Feet should be positioned at a staggered stance with head and back erect and straight in a neutral position. Hold medicine ball in front of your chest for added challenge.
3) Lower body by bending at hip and knee until thigh is parallel to floor. Body should follow a straight line down towards the floor.
4) Return to start position while raising the medicine ball overhead and repeat. Alternate or switch to other leg after prescribed reps.5)Stroke Rehab Tip: Use a mirror and focus on a central point straight in front of you and always train both sides
This exercise is from my PT coaching site-My-Physical-Therapy-Coach.com
*You should follow a rep and set sequence that makes sense for your level of rehab or conditioning. If you are working with a physical therapist or qualified trainer consult with them first about adding this full body balance exercise to your stroke recovery training.
-
David Dansereau
Do you get my Health-E-News Ezine with tips for stroke survivors?
Why not? It’s free and full of diet reviews,tips to boost your nutrition IQ, and a quack list of products to avoid! In addition it provides quick therapeutic exercises suggestions related to your condition. You’ll also be granted a free access pass to my webinars on timely stroke rehabilitation and technology topics of interest. As a bonus, get free access to back issues with links to hundreds of my training and rehab articles. Don’t miss out-it will not be free forever… Get it now!
-
David Dansereau
Another stroke survivor/PFO story
This is the original article from Readers’s Digest Race Against Time that I referenced in my PFO story. The archive was down for some time but here once again is the entire article. Well worth the read as it goes over new technology now available to repair / remove damage from stroke, but you have to recognize stroke symptoms and act fast to get help ASAP.
__________________________________________________
Traci Miller woke up to the sound of quick footsteps scampering toward her room. It was shortly before dawn on a rainy Saturday in April 2006, but her three-year-old daughter, Alexis, was up unusually early. Traci tucked the toddler back in bed, then checked on one-year-old Rylee, who was sound asleep in her crib. It would be nice to slide under the covers for a few more minutes. But the redheaded mom from Hacketstown, New Jersey, had a busy day planned. She and her husband, Michael, had an appointment with a real estate agent to look at larger houses for their growing family, and her parents would be visiting later in the day. “I’m going to take a shower,” she told Michael, who was still dozing. “I’ve stuff to do before Mom and Dad get here — and we need groceries too.”
Seconds later, Michael heard a thud. He didn’t know it, but a desperate race against time had just begun. He leapt out of bed to see what was wrong. In the bathroom, he found his wife of five years slumped against the tub. “I was screaming her name and asking if she was okay, but she just stared straight ahead and didn’t answer,” says the 36-year-old civil engineer. “She was moaning, kind of crying. I was terrified.” He carried her to their bed, then dialed 911. During the call, he noticed that Traci couldn’t move her right leg. “That scared me even more.”
Within minutes, police rushed in with their radios blaring. Since Traci couldn’t talk, they asked Michael what had happened. “Maybe she hit her head and got a concussion,” he replied. Before long, the bedroom was full of paramedics, who examined Traci, slipped a brace around her neck, and loaded her onto a stretcher. During the wait for the ambulance, which was delayed on another call, Michael asked a neighbor to come over and watch the kids until he could reach relatives. Amazingly, baby Rylee slept through the commotion, and Alexis played quietly in bed, unaware of the emergency.
By the time the ambulance finally arrived, Michael was frantic. The right side of Traci’s face had developed an alarming droop, and her mouth hung open. She was raced to a local hospital, then airlifted to a trauma center in Morristown, New Jersey. “I knew they wouldn’t do that unless her condition was very serious,” says Michael, who followed in his car. “I was crying as I drove. How could she have hurt herself so badly slipping in the bathroom? I panicked to the point that I thought about losing my wife, and our girls growing up without their mother.”
When Michael reached Morristown Memorial Hospital at 7:40 a.m., he tried to get his emotions under control. During a brief visit with Traci, who was paralyzed on the right side of her body, he discovered that she could communicate with head motions. “Did you fall?” he asked. She nodded yes. “Do you remember how you fell?” She shook her head no. Then she was wheeled off for tests, including a CAT scan, while Michael prayed in the waiting room and called home to check on the kids.
Nearly an hour later, ER doctors returned with shocking news: Traci had suffered a stroke — loss of blood flow to part of the brain, usually caused when a vessel is blocked by a clot. Michael couldn’t believe it. How could this have happened? His wife, a slim, physically fit nonsmoker, was only 35. His mind raced from one terrifying scenario to another. One of his relatives had a stroke and was never the same afterward. Would that happen to Traci? Would she ever walk or talk again? Was she going to die? Strokes kill more than 157,000 Americans a year, about 60 percent of them women. Survivors can be left with paralysis, impaired vision, chronic pain, difficulty speaking, or cognitive or emotional problems.
The neurologist explained that it might be possible to reverse the stroke. But it all depended on whether Traci could be treated in time. The longer her brain went without blood flow, the greater the damage. Before the doctors could do anything, they needed to pinpoint when the symptoms started. There are only two FDA-approved therapies for stroke, and both had to be given within strict time limits. Michael hadn’t looked at a clock, but his best guess was that she was stricken at around 6 a.m., or possibly a little later.
Sparing Death With the Merci Retriever
The specialist checked his watch. It was 8:45 a.m. There were just minutes left to administer tPA (tissue plasminogen activator), a clot-busting drug that’s only approved for use within three hours of a stroke. But the doctor worried that the clot in Traci’s brain was too big to dissolve with tPA. If it didn’t work, she’d be left profoundly disabled, if she survived at all. Up to 50 percent of people with a blockage where Traci’s was die.
Traci also qualified for a newer procedure, then offered at only one facility in her state: Overlook Hospital, in Summit, New Jersey. A corkscrew-like device called the Merci Retriever (FDA approved in August 2004) is designed to pluck clots out of blocked vessels like corks from wine bottles. It’s more beneficial than tPA for large blockages and works for up to eight hours after a stroke, says Ronald Benitez, MD, Overlook’s director of endovascular neurosurgery. “Expanding the treatment window means many more patients will be spared death or disability, since most people don’t get to the hospital in time for tPA.”
The Merci treatment has serious risks, including punctured blood vessels (brain hemorrhaging), which could worsen the stroke or even be fatal. And since the hospital had recently acquired the device, Traci would be only the second patient in New Jersey to undergo the procedure, which is 54 to 69 percent effective at restoring blood flow, according to a 2006 study at University of California, San Francisco. Faced with a life-or-death decision, and a ticking clock, Michael didn’t hesitate. Scrawling his signature on a consent form, he shouted, “What are you waiting for? Let’s get her moved to the other hospital!”
While doctors scrambled to make the arrangements, Michael called Traci’s parents. “I hoped I’d made the right decision,” he says. “I would have agreed to anything if it gave Traci a better chance at getting back to normal. She didn’t seem to be suffering, but when the doctor asked her to stick out her tongue, she couldn’t even do that.” Michael sped to Overlook Hospital so fast that he actually beat the ambulance there. When Traci arrived, about 10 a.m., he kissed her and promised that the surgeons would help her. “I must have said ‘I love you’ a hundred times before they pulled me away. I was bawling my head off.”
Four and a half hours after the stroke began, Traci was put under general anesthesia. Dr. Benitez threaded a tiny tube into an artery in her leg. Using x-ray images as a digital road map, he navigated through a maze of blood vessels to her brain. When he reached the blocked vessel, he squirted tPA directly into the clot, a still experimental use of the drug. “That loosens the clot up so it’s easier to extract,” the surgeon explains. The next step was inserting the Merci Retriever into the tube. The Retriever is a flexible wire made of metals that have “memory.” When the nickel and titanium tip comes out the other end of the tube, it “remembers” to curl into a corkscrew. If all goes well, it snares the blockage when pulled back through it.
But Dr. Benitez’s first attempt only captured a few fragments — just enough to start a trickle of blood through the obstructed vessel, like water spilling from a leaky dam. Not good enough. The process was carefully repeated. “Traci’s being so young and having two kids added to the urgency,” Dr. Benitez says. The device was slowly extracted. To the doctor’s relief, a huge clot was tangled in its coils. X-rays showed blood surging through the vessel at the normal rate. Two much smaller vessels, though, were still clogged. Dr. Benitez squirted in more tPA and they slowly regained flow, except in one tiny area. He’d done all he could to bring her back.
Soon after the 90-minute procedure, Traci could wiggle her right leg. When she saw Michael in the recovery room, around 1 p.m., her first words were, “I love you.” He was amazed and ecstatic. It seemed like a miracle that she could speak so soon after the procedure. She was moved to the neurology ICU, where several anxious relatives were waiting to see her. A nurse explained after such a severe stroke, they’d have to monitor Traci’s progress one day at a time. It was too soon to predict whether she’d regain all of her former abilities, even with extensive rehabilitation. Michael sat at his wife’s bedside, holding her hand. “You’re going to be just fine,” he promised. “You’re a fighter and can overcome this.” Traci nodded slowly, then drifted off to sleep.
Bringing Back Traci
Over the next 24 hours, he rejoiced at each new milestone. Although her speech was soft and slurred, she whispered simple words, such as “yes,” “no” and “hi.” She also recognized friends and relatives who dropped by, and even greeted her brother-in-law by his nickname, “Dupe.” On Sunday afternoon, a day and a half after the stroke, she took her first steps, with the aid of a walker. “I was very excited, relieved and hopeful,” says Michael. Even though Traci seemed dazed, and had limited use of her right arm, he was convinced that over time, she’d recover 100 percent.
The next day, however, there was a setback. When a doctor checked her vision, she didn’t react when he shone a flashlight into her left eye. “I was devastated that I couldn’t see on that side,” says Traci, who was struggling to understand what had happened to her. “I didn’t get the whole stroke thing, or why something was wrong with my left eye, when the other problems were on the right side of my body.” The doctor thought that a fragment of the clot might have blocked flow to a vessel in that eye during the stroke, but he held out hope that her vision might eventually return. By the end of the week, she could see shadows.
She graduated from a walker to a cane, and began to speak in complete sentences. “I’m going to be okay,” she told her parents. They were helping Michael care for the kids. Rylee was too young to talk, but Alexis kept asking to see her mom. She had to wait until Traci was moved from the ICU to a regular hospital room. Before the visit, Michael explained that Traci used Play-Doh to exercise her hand. Alexis rifled through her toy box until she found a container of pink Play-Doh, the little girl’s favorite color. “This will help Mommy get better,” she proclaimed. Traci was so happy to see the children that she burst into tears, then put Alexis in her lap while they squeezed and molded the Play-Doh together.
After a week, Traci was transferred to a rehabilitation center, where she received physical, occupational and speech therapies. Two weeks after the stroke, she was well enough to go home and begin outpatient treatment. Before long, she was walking without a cane, though her right foot dragged, causing her to stumble frequently. She gradually learned to walk normally, and her right arm gained greater strength and flexibility, though it remains weaker than the left. Learning to write again was a struggle. At first, she could barely print her name, but eventually, her penmanship was nearly perfect.
As her physical skills returned, her thinking also got sharper. “About four weeks after the stroke, it finally hit me how serious this was. I wanted to know, Why me?” Tests revealed a previously undiagnosed birth defect: a small hole in her heart that made her more prone to stroke. However, doctors decided to postpone repair until she was further along with her recovery. Meanwhile, sight gradually returned to her left eye, though her vision is blurry on that side. She fumbles for a word occasionally but has no other speech problems.
In early July, she returned to her job at a pharmaceutical company. “I’m amazed that I had a 50-50 chance of dying, but I’m still here,” says Traci, who had a cardiac repair operation in September. She’s also had an emotional change of heart. “I’ve cut back on my hours at work, and I take more vacations. My life is here at home with my girls and my husband, and I want to enjoy it to the fullest.”
-
David Dansereau
Lower Body Conditioning after a Stroke: It’s Still Your Job
By David Dansereau for Stroke Smart Magazine
Stroke rehabilitation therapies and modalities for lower-extremity training have indeed advanced in recent years with improved technology. Many of these advances are being driven by what researchers are learning about brain recovery and neuroplasticity. Physical therapists that embrace this concept for stroke recovery now develop rehabilitation protocols and use the same technologies that on many levels imitate conditioning for an athlete post-sports injury or for performance enhancement. For example, motion analysis and capture was a technology formerly reserved for high level athletes, but increasingly PTs are recognizing its power for stroke therapy.
Get ready to do your job
When preparing for lower body conditioning after a stroke it is important to set SMART goals. Once goals are set, the mindset (or work ethic) of the stroke survivor must mirror that of the athlete. Athletes perform purpose driven exercise and as a stroke survivor so should you. Don’t forget, stroke recovery is your job.There are three qualities that all top athletes (and stroke survivors) share when preparing for their training (and stroke recovery):
- 1) Acquire a strong desire to succeed and are passionate about their goals
2) Open minded attitude about how to develop skills to do the best job possible
3) Movement (or exercise strategy) has purpose towards their goalsIf you don’t have access to the new stroke therapy technologies, don’t get discouraged and quit your job. Know that traditional strength, balance, and gait training on land or using treadmills and other tools are still very effective. With and without the use of assistive devices these methods have proven to get results for stroke survivors that are motivated to get the job done. If you desire to get back your independence and confidence, the most important factor in any exercise program is compliance. It doesn’t matter if you paid thousands for your home exercise equipment , robotic device or functional electrical stim unit or you simply invested just a few dollars on an exercise ball, band or tubing. What matters most is that you use it regularly and with purpose.
In today’s changing healthcare system with lowered reimbursements and shorter treatment times, emphasis on home-based training continues to increase. It’s important for the stroke survivor to understand the importance of continuing with the appropriate exercise prescription for their own condition to ensure effectiveness and maximize functional outcomes. It is your job to put in the time to recover to your fullest. Do your job!
Home-based Exercise is Your Job: Here’s how to make it simple to get started
Elastic resistance or exercise tubing is ideal for the home setting because of its portability, cost and effectiveness (yes, even elite athletes use it because it works!). Several accessories are available to assist home exercisers, such as exercise handles, door anchors and portable gyms and flexibility tools. For more information on effective home resistive exercise programs using a thera-ball, bands or to locate inexpensive home gym essentials visit my-physical-therapy-coach.com and click on the Stroke Coach and Exercise Coach links
Resources/References:
Article Adapted from David’s Smart Moves Stroke Recovery Guidebook available Jan 20101 Stroke Smart Nov/Dec 2008 issue. 2008 The year in Review: Research and News that will change the face of stroke
2 Motion Analysis Corp (www.motionanalysis.com)
The MotionMonitor™, by Innovative Sports Training (www.innsport.com)
3 SMART Goals article for Stroke Smart by David Dansereau - 1) Acquire a strong desire to succeed and are passionate about their goals
-
David Dansereau
Bruschi in a category all his own – Kathryn Tappen – NESN.com
Thank you Kathyrn for your article today on Tedy Bruschi and for giving some well deserved credit to a real leader and a true hero for the work he does on and off the field. Many still don’t know about Tedy’s commitment off the field and the work he does with Tedy’s Team and the American Stroke Association. ps-Keep up the hard work Tedy, keep the faith, keep the focus and Never Give Up!!! There are too many stroke survivors counting on you.
Read Kathryn Tappen’s full article here on Tedy Bruschi posted today on NESN David Dansereau Stroke Survivor Member of Tedy’s Team http://www.know-stroke.org
-
David Dansereau
Know Stroke. Know the Signs. Act in Time.
May is National Stroke Awareness Month. Know all your risks by watching this video from the National Institute of Health’s Stroke Awareness site
-
David Dansereau
This is the story how a PFO caused my stroke
My Stroke
Original post Nov 2006“While I have remained mostly silent about this issue over this past year, I now know I must let everyone hear my message so that I can help do something to educate others.”
-David Dansereau,Stroke Survivor (know-stroke.org)
David Dansereau (Know-Stroke.org)
Several months ago I had a stroke. It was revealed after months of testing that it was caused by a defect in my heart from birth called a patent foramen ovale or PFO . The few people I had spoke to about this to this point were on a need to know basis and even then, I summed it up to them as “remember what happened to Tedy Bruschi of the New England Patriots at the end of the 2005 football season?”. If you don’t know about his story, he also had a stroke from a PFO.
I used that line in part because I was still in denial- I could not have had a stroke at my age- and also-because I didn’t want to share details on something so personal.I’d like to take the time to tell you now about my experiences and the reason I have started this blog to raise awareness about the hidden stroke risk of PFO and the connection between the brain and heart.
This first post is rather lengthy but I feel it is important that I include all the background information on PFO presented in the order here. I hope you take the time to learn more about this condition through this summary of my own experiences and pass along the information to anyone who will listen.
You’ll learn a bit more at the end of this article on why I intend to raise awareness for this silent risk factor for stroke. (Skip to the raise awareness section at the end of this article if you are short on time.)
First of all, what is a patent foramen ovale?
Also referred to as a PFO, a patent foramen ovale is a defect or an incomplete closure in the walls of the chambers of the heart. A patent foramen ovale can vary in size but the location is usually the same. The flap like opening or hole is in the dividing wall (septum) between the upper two chambers of the heart – the left atrium and the right atrium.
Identifying a PFO is important because a PFO is a potential pathway for a blood clot to escape from the heart and travel to the brain, causing a stroke.
How does this heart defect occur?
In the womb, all babies have a PFO. This is because a baby does not use its own lungs to filter and oxygenate its blood. Instead, it receives oxygen-rich blood from its mother via the umbilical cord. This blood has been filtered and oxygenated by the mother’s lungs. The PFO allows this blood to be sent directly to the brain, which has a high requirement for oxygen-rich blood during fetal development.
How common are PFO’s?
In most people, the two flap-like sections of septum which form the foramen ovale (or hole) fuse together after birth to form a solid dividing wall between the right and left atria. However, in an estimated 15-25% of the population, this area of the heart doesn’t fuse together and remains open or “patent”. This opening makes it possible for blood to cross from the right atrium to the left atrium—this is called a right-to-left shunt. The danger of blood shunting in this manner is that if it contains small debris or a clot it has bypassed the body’s natural filter (the lungs) and can pass directly up to the brain and cause a stroke.
Worldwide, it is estimated that approximately 500,000 people may suffer this type of stroke each year.
For review of stroke risk factors and understanding the different types of strokes follow this link to the American Stroke Association.
What circumstances increase risk of stroke for someone with a PFO?
The two flap-like sections of a patent foramen ovale overlap and usually prevent blood from crossing from the right side to the left side of the heart because the pressure in the right atrium is typically lower than in the left atrium. Under certain circumstances the pressure inside the right atrium increases to such an extent that the flaps may separate. This allows blood which has not been filtered and oxygenated by the lungs to “shunt” or cross the PFO from the right atrium to the left atrium. People with a PFO are generally at most risk of an event if they perform a Valsalva maneuver while straining or lifting. This occurs when a person exhales with a closed windpipe, exerting pressure on a PFO. Some examples are: certain exercises like lifting weights, lifting heavy objects or while straining during a bowel movement or childbirth. Depending on the size of the PFO many people with this condition will have no symptoms. Small amounts of blood shunting do not usually cause problems.However, if a PFO is large enough and the blood that crosses the PFO contains debris or a clot, this embolism can enter the arteries which supply the brain and cause an ischemic stroke or transient ischemic attack (TIA).
How is a PFO detected ?
From my personal experience, A PFO can be easily missed on physical examination. A PFO will generally not be detected during a routine physical especially if is not causing symptoms at the time. For example, listening to the heart through a stethescope, measuring blood pressure and heart rate and even by using a more involved heart monitoring device, an EKG or ECG, can all be normal. These routine observations, along with basic blood work are all part of the normal tests completed during a physical.
So, how do you know??
Not until symptoms develop unfortunately. In my case I had been experiencing unusual fatigue, migraines with aura (vision loss) and light tremors for quite some time. In my gut and in my appearance I knew something just wasn’t right. I also noticed my tolerance for exercise was declining, my heart would sometimes race unexpectedly, and I would be looking for the pillow to put my head down to rest right after getting the kids down to sleep. Basically, I was exhausted. I had tested negative for mono and a host of other potential viruses or the other usual suspects. It wasn’t until I had experienced an increase in the frequency of migraines that more extensive tests were initiated. I then had multiple MRI’s of my brain and neck performed, CAT scans, wore a halter monitor for 24hrs to keep track of my heart and was poked lots of times to analyze different blood work profiles.
Even with this information it was not clear what was happening to me with any degree of certainty. I had received provisional diagnoses that went from having MS (multiple sclerosis), to a brain aneurism, to having lupus, guillian-barre or some other autoimmune disease.
What was known for sure was I had unusual changes to certain parts of my brain for someone my age.
I then went for more tests and had comparative studies done of my brain through repeat MRIs and then more bloodwork to reveal that a had “ruled in” for a stroke. “No way!” was my original response. At first I was in denial because I knew my risk factors for stroke were very low, so I thought…My risk factors for stroke? None-so I thought…
Let me give you a bit of my health history so we can go over this together:
Additional history:
Stress level-Low at work- even though I run my own business I love what I do and anyone who knows me will tell you I generally let everything roll off my shoulders…
Stress level-Home/social- Moderate/high –Any parent reading this knows I would be crazy if I said raising 3 small kids is not a challenge. But my wife and I fortunately are SO together on this and she is a wonderful supportive spouse and excellent mother to our children.
*Exercise intensity. I had completed the Rhode Island and Boston Marathons as well as participated in other endurance events like biathlons and distance bike rides. Never had experienced unusual symptoms. (never won any of them however I always finished!)
Sports: Played baseball and hockey in high school Never recall having had a problem with my heart during any game.One significant event. I recall one incident during a high school hockey practice that I now know was when I had my first “TIA” or mini stroke. I was waiting for my turn along the boards to skate through a drill when I lost the use of the entire left side of my body. This event lasted for only a few minutes but it seemed like an eternity at the time. The event passed, I continued to play, and told nobody about it other than a coach who had witnessed me fall. (Looking back, most definitely a mistake on my part and that of my coach but more on this in another article coming for parents and coaches)…
So, how did I rule in for a stroke?? Apparently it is not until someone my age with no significant warning signs has a stroke or similar event like the ones I described that the heart gets a closer look at as a possible cause of concern. The second event I had that ruled me in for a new stroke was when I had the intense headaches/migraines that lasted for a solid week. To confirm the Neurologists suspicions I had a special ultrasound study of my heart performed (Ultrasound with bubbles) where saline bubbles were injected in to my veins to see if they passed between the upper chambers of my heart. They did see bubbles shunting. Not normal. What to do next? Need to determine the size of the PFO. Simply slowing down the recording of the heart and counting bubbles that passed through during the ultrasound is not enough to really measure the size of the hole. So what’s next? In my case a TEE (transesophageal echocardiogram) was ordered. During that test I was placed under general mild sedation while a small camera was passed down my throat to get a closer view of the heart from inside the chest wall. The esophagus runs next to the heart and the TEE provides clear, detailed images of the heart and blood flow. Other than having to swallow some vile goo to numb your throat- the test is painless because you are basically out cold.This picture can usually determine the size of the hole and determine how to best treat the defect. In my case it was revealed I have a “moderate” size hole. Not good.
What are my options??
How can a PFO be treated?
There are different treatment methods available to help prevent stroke or TIA in patients who have a PFO.
Medication
Traditionally, stroke or TIA patients who have a PFO are given medication to thin the blood, or to make it less “sticky”, and prevent the formation of clots which could lead to stroke. Typically, these drugs include warfarin and aspirin. Treatment to prevent embolic stroke has traditionally required a drug regimen of anticoagulants (blood thinners), which prevent the blood from clotting and therefore may impose significant lifestyle restrictions on patients.Surgical closure
Until the 1980s, open heart surgery was the only alternative to medication. Today, these procedures are infrequently performed because major surgery is involved and the risks are significant. Currently, less invasive experimental methods are available, for example non-surgical closure.Non-surgical closure
Nowadays, there is a non-surgical method to treat PFO using a device called a septal repair implant. It is important to note that this procedure is not yet FDA approved and is referred to as “Off-Label” according to some interventional cardiologists you may speak to.What is involved in the non-surgical PFO closure procedure?
The procedure is carried out by an interventional cardiologist, a doctor who has been trained to access the heart for diagnosis or treatment using specifically designed equipment. The procedure is performed in the catheterization laboratory of the hospital. Before you become a candidate for this procedure, you have to be assessed as appropriate for closure through use of the TEE test I mentioned, other anticoagulation blood work, and depending upon which hospital you go to, receive an unanimous decision from specialists in three separate disciplines to allow this procedure. (For example, in Boston it is cardiology, neurology and hematology). In one such Boston hospital I went to for a second opinion, it is in the hands of this PFO committee of doctors I described above whether your heart is appropriate for closure. (Yes, MUCH more on this later in a follow up article…)
The closure procedure itself involves threading a small, hollow tube, called a catheter, up into your heart through a vein in your leg. Various septal repair implant are being experimented with. The most popular one available now looks like a mess sleeve that can be folded rather like an umbrella. It is passed through this catheter to your PFO and then this umbrella is opened to block the hole. All the time, the interventional cardiologist can see your heart and the catheter equipment being used inside your body on a monitor. This ensures the catheter and implant are correctly positioned. Over time, heart tissue grows into the mesh and over the frame to fully cover and seal the septum.
Bottom Line:
I took the time here to present my own lengthy case study because I am still not sure of my own outcome nor do the experts know at this point what are the best options in my particular case.
The facts:
I know my skills and the type of manual physical therapy I enjoy using in my work to effectively treat patients places me at increased risk.
I also have responsibilities at home with young children and can not possibly stop everything I’m doing to let the science, technology and the doctors catch up. This whole process so far has tallied almost $45,000 in medical expenses (thank God to this point the costs have been covered by our insurance). These expenses were to reimburse for diagnostic tests and visits to specialists too numerous to count. With that number in mind, the specialists are still mostly uncertain on how to best treat my condition.What I do know is that I still have daily unexplained
migraine headaches, I am picking up my kids and going about my day and I am more determined than ever to make a difference.
You see, a doctor can’t answer the question for me that my three year old son always asks me when he knows I am not feeling well – “daddy, when your head feels better can you pick me up?” Basically, I am thoroughly frustrated and through with waiting. You see, the only advice I have received to date from physicians in Boston is “Not to pick up my kids or to work” until six weeks after I had this defect repaired.OK, so what to do after that statement? Panic. Right?
Then try to set up an appointment ASAP to get this hole closed right away. Only as I had mentioned I have to first meet with a committee to get unanimous approval (by hospital policy) to ensure that this is the best option for me. OK, the surgeons say cut and get it done right away but here’s were I lose my cool. What pains me the most these days is I am almost going on three months and I’m still waiting for the rest of the required committee to even see me. To make matters worse, I am not even close to being on the top of their cancellation schedule. This despite, we have tried “pulling all of our punches”, calling every “who knows who” lead to get in quicker, and even going against accepted strictly held practices “in committee circles” and actually pleading my case directly to the secretaries trying to be seen.
Then, just last week I received a note in the mail that I’m scheduled for an appointment in late June. OK, it is now March. And that was supposedly the ”easier” of the two doctors to get seen by. Wait some more for Boston I guess…
While I am STILL waiting on the next available appointment for Boston I am rethinking trying to figure things out here in Rhode Island at the same time. I received my original diagnosis in Rhode Island and went to Boston for a second opinion. Rhode Island does not have a formal PFO committee but I was told by their interventional cardiologist that I was I candidate for closure and to set up a date. The only problem here is that I am receiving conflicting reports compared to the opinions in Boston. In RI, I am told that in my particular case I would be argued to be “on the fence” or in ” a grey area” to close my PFO because of the risks involved and it was advised I try medical management first. You see, it is the thought of some physicians that intense migraines can cause “stroke like” changes in the brain and can cause a stroke even considering the fact I have a PFO already (to make things even more confusing).
Anyway, I cautiously followed a medical management approach for a short trial. I went on a low dose cardiac medication to reduce the risk of another event by trying to dilate my blood vessels and possibly reduce the intensity of the migraines. Unfortunately, I tried the drug therapy (calcium channel blocker) and it actually intensified my headaches, gave me tremors and made me feel quite odd to a point of saying I would not have trusted myself driving a vehicle. I stopped the drug therapy.RAISE AWARENESS
So here I am. You know my full story now and are up to date. I’ve stopped the medications except for a baby aspirin and am using my own dietary means to keep my blood thin. Whether I will ultimately require this surgery remains to be seen. What you are not up to date on is my motivation to make a difference.
This is something I can take control of while the physicians try to figure this out. I have been working on a plan to help others learn from my experience. I feel very fortunate that I was not left completely impaired from this event. I still have periods of noticable loss of balance and coordination as this was the part of my brain that was injured. Just when I think I have recovered from this deficit, I’ll walk through a doorway in my home and completely misjudge the opening. I usually hit the door frame like a linebacker in football taking on an attacker and that’s when I realize I still have work to do.But I am VERY lucky and I know it. Having worked in acute rehab as a PT I have seen the devastating results a stroke can inflict when it attacks the brain.
Turning PointsI had three events during this process really stick out in my brain and at times they still keep me awake thinking about how to fix them.
1) Something one of the physicians in Boston said to me while he was taking my history and recording data for possibly enrolling me in a PFO closure study. I had asked him a question about why so little information is out there and available for people on PFO and migraines? Part of his reponse really alarmed me, it was that “insurance companies don’t want everyone to go running to their doctors” to have their hearts checked. What? All the money, time, fear and resources I and my family have gone through and that was the response. Insurance costs?? He has to be wrong. But I intend to find out and make lots more people aware in the process.
2) General chaos: I went through my detailed history to clearly illustrate the uncertainty for which this condition presents. At least in my example I’ve experienced delays and miscommunication by doctors that I have dealt with in the same hospital or between hospitals, all in the same areas of expertise. They either can’t agree or don’t communicate on the connection here. That’s what the studies are for I guess to facilitate the science, but they are leaving many patients like myself very frustrated. It gets me thinking how many others out there are experiencing the same symptoms I am in silence. From some of the forums online I have tried to get a picture of this problem and I know it is an issue. Many young adults and parents with young families describe similar situations and the theme is the same- they are all looking for answers and the best treatment options. The question that must be asked is how can we be doing better?
From the statistics I presented for you on PFO, the number of people potentially with symptoms are as high as 25%- 1 in 4 ! I guess I picked a one. I can’t put it back, but I HOPEFULLY can do my part to raise awareness. Which leads me to the third and most important event in my story.
3) The final event that compelled me to take action happened just last week. I guess I was up late one evening and my brain was working overtime trying to figure this whole thing out.
What to do with my business? How to handle family and finances? How to treat these headaches or reduce the risk of a repeat event? And, if there’s a next time, will it be the “big one?”
Anyway, my wife was watching a special about Oprah and her dream of opening a school for girls in South Africa. For some reason the young girls eyes in that show just grabbed my attention. Then I took the time to sit down away from my computer and listen to their stories. Their situations captured my heart.
Did you see this show??
What the heck was I feeling sorry for in my own life??? These girls had absolutely nothing but a dream of a better future and making a difference for people in their country. They had basically nothing but knew EXACTLY what they needed to do. The way they spoke so eloquently about their goals despite not even having a bed to sleep on at night. Wow! By then my wife had fallen asleep, and I am glad she did because I was in tears. If you didn’t see this Oprah special make it a point of going to her website, getting a Tivo copy from a friend or Google Oprah and the Leadership Academy for Girls to learn more.
Congratulations, Oprah you are helping these girls shape their futures. You have also accomplished an incredible dream and life goal by giving back and in return you just know these girls will go on to really continue to pay it forward.
While this was a long post, I hope it lays the foundation for things you’ll be reading to come. See my update to this story in my next postWhen you read my next update for example, please do not think I am crazy, rather keep my journey so far in mind and the reference I made to the Oprah story.
Here’s an update and video on what I’ve been doing to raise stroke awareness:
Check out our new patient advocacy group at PFOResearch.org
* The background information and description of a PFO were from Wickepedia online encyclopedia. I added my own experiences in from my medical history to illustrate just how easy it is for this condition to go undiagnosed. I also intentionally did not include physicians names in this story or institutions to respect the identity of those involved with my care.-
David
The update to my story is here:
http://www.my-physical-therapy-coach.com/patent-foramen-ovale.html -
Sue
Hi David,
Thanks for all the great info on PFO. I too have a PFO, but I have two blood clotting mutations that would make closure risky. The doctors found it when I was pregnant with my second child. I live in RI and the article on Jaime caught my attention the other day too. It is very stressful to know you have this defect and that a stroke is possible. I too have been tested for MS, lupus, etc.. They have never found evidence of stroke on my MRIs and I have had numerous scans done. Again…thanks for the info, I am going to bookmark your page b/c it is the most informational place I have found on the net. Sue
-
-
Blake
i know this post is old, and somehow i’m just stumbling a pun it. But i know your experience, having a tia a few years before, and in hindsight knowing something should have been said (which i did, and was told i had a virus). Then one day, waking up with one side fully paralyzed, freaking out. But i pushed through it and worked that day. Up until i had been in the emergancy room for over 8 hours i didnt know i had had a stroke, until a doctor came by, looked in, said “we think you had a stroke” and left for another ten minutes. So i hope this finds you well, and hope things have turned around for you.
Blake
-21yo college kid -
David
Blake;
Thanks for sharing your story. One of the reasons why I keep this blog alive is to raise awareness. Young people can have strokes and more people especially PHYSICIANS need to recognize the warning signs and not rule out age. -
Jen
David,
I just found your blog and our stories are so similar – with the exception your in much better shape on the exercise side of things.In the fall of 2007, I had a series of unexplained events that lead me to see neurologists. I had a history of migraine with aura and the first thing my neurologist said was “lets get your heart checked.” This lead to many tests that follow the same route as you and I have a PFO. I also had MRIs and tests for everything under the sun.
The incidents that lead me to them started with a really bad migraine with aura, I have only had a few in my life this big. This was different, I was getting tingling sensations in my feet and hands from this migraine, huge visual aura, as well as major fatigue that took over a year to recover from. It was as if I had been zapped and all my energy disappeared. After months of “getting better” in April of 08 I ended up in the ER after a migraine with aura gave me a num face, rapid heart rate etc., and basically panicked me. After CATS and MRIs TIAs were ruled out or could not be concluded. I was left scared and with a numb thumb for weeks.
It’s very odd news to hear at you have a hole in your heart…what does this mean? I had so many questions and fears…and no answers. I too was told “if we have to fix we will but…” I was checked out and I’m still followed once a year by a cardiologist.
I guess the frustration in all of this is when I now get a migraine, and since 2007 they have changed dramatically, I now have this PFO fear in my mind. I had a neurologist who would love to have it fixed – “just because you never know” and a “cardiologist” (whom I like) but admits I would have to enter a trail (which I believe this trial collapsed last year) and or to fit under insurance rules – have a stroke.
I’m now on low dose aspirin and a beta blocker for the migraine symptoms but sorta feel like I’m living in a gray area. I have an increased risk by a percentage point because I have a PFO yet all the studies come back inconclusive that the PFOs are the cause for the auras, and will fixing it help? Maybe but lets not fix until you have a TIA or stroke?
It’s an odd world to be in sometimes. I try not to think about it and hope I don’t have a stroke, if I do…one that is minor.
Anyway – your story is very much like mine but I have not had a stroke or repair. Up to 25% of the population is a lot of people, 1 in 4, have PFOs…I do.
JM -
Edna
Hi David,
I was looking for a website that explained to me a little bit about what a PFO is and how it can be taken care of. I went to youtube and heard little of your story and your three kids. So I went to your blog.
There I learned about your story. Guess what, I am 31 years old with 3 tittle girls. I know how it feels and I also like you didn’t know I had a stroke and that I also have a PFO. Unfortunately like you I also suffer from migranes since I was in high school. I was also athletic.
Now that I am 31 I excersised too but just took runs around the block and a here and there video on youtube. However, I did feel exausted all the time. Fatigue and migranes kept on being my unwanted daily partners. I couldn’t finish cleaning the entire house and keep up with my girls. The noise kept growing too. This added to my migranes. I even thought…maybe those freekn t.v. commercial (which get soooo loud) are giving me migranes. Unfortunately 3 weeks ago, my right side of my body just felt sooo heavy and I just laid on the ground watching the whole house spin and spin.
This was the worst thing that has ever happened to me. Fortunatly my 10yr old daughter called 911. To make this long story short…I didn’t have to wait to get seen after the hospital, now my cardiologist did the same TEE and will talk to me on friday. I live in CA. I don’t understand why the comittee is making you wait sooo long. I feel that it is wrong. Like you I do have dizzinness, headaches, and I lost my balance, not completely but things just seem to move around.
I just hope the best for you. Hopefully, people with migranes take a note about this. Dizziness is not normal period.
Michele, 
Pam are discussing. 
Edna, 
Jen and 3 others are discussing. 
Pam 1:06 am on November 11, 2010 Permalink |
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?
David 7:57 pm on November 11, 2010 Permalink |
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
Michele 3:41 pm on January 19, 2011 Permalink |
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)