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)
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:
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.
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.
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.
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.
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.
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.
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 post
When 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 on what I’ve been doing to raise stroke awareness:
* 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.