Share Your Story
If you have arrived at my blog after searching for information on PFO,stroke,migraines and/or are researching the connection between the heart and the brain, I’d like to hear from you. Please consider sharing your own story, or if you’d prefer to reach me in private I can be contacted through my corporate website using the link below at my-nutrition-coach.com (sorry I will not post my personal email here as I don’t like to let the internet spiders get my email address) :
http://www.my-nutrition-coach.com/contact-us.html
If you’d like to read some of the other stories that have been posted, simply click on the comments link below to read more or post your own story.
Leigh Perry, 
Wendy Wright and 8 others are discussing. 
David 6:38 pm on February 11, 2008 Permalink |
How do I contact you? How will you respond to me??
Any time you leave a comment on my blog I receive a note that alerts me. Your email is available to me to reply directly to you but your email will not be visible on my blog. I will respond to all posts as soon as I can get to them. (I am currently getting caught up on everything after all the time away to train for the Boston Marathon so if this urgent or if you prefer to try to speak with me personally (in private) my office phone number is 401-632-0868 or link to my corporate site http://www.my-nutrition-coach.com and use the contact form to email me directly.
Sandy 12:38 am on February 15, 2008 Permalink |
Hello,
Thank you for sharing your story. Like you were, I am 39, have always been in good health, and have recently discovered I have a moderate PFO. I learned this only after an event 6 weeks ago in which I had numbness, speech disturbance, impaired consciousness, confusion, inability to remember my kids’ names or what year it is. These symptoms lasted longer than 12 hours. It then took me 2 weeks to get my full memory (what’s this new CD–oh, it was a chrismas present from my husband?) and cognitive abilities (where do the dishes go when emptying the dishwasher?) back to normal. I’ve had migraine with aura my whole life, and with these I’ve had numbness, aphasia and confusion, but never lasting for longer than a few hours. My MRI was normal and therefore my headache doctor (a neurologist) says the event was a migraine. I’m now on low dose Topamax to prevent migraine. I continue to take the baby aspirin I started a year and a half ago which almost eliminated my migraines.
I am worried I will have a stroke and am interested in closing the PFO for both stroke prevention and migraine prevention. But I’m not eligible for clinical trials because I don’t have migraines as often as 4x per month. And I haven’t had a stroke yet so I can’t get it done without a clinical trial, as far as I can tell. By some definitions the event I experienced was a TIA, and perhaps that could qualify me. My blood pressure has always been very low, and I’m thin naturally. But with stress from work (and from having small kids and no free time), I’ve started to get near hypertensive peaks at work. I used to run (even did long distance as a kid) and be very active, but now I struggle to exercise even once a week. I feel I’m a timebomb. Do you have any advice about PFO closure?
I look forward to hearing from you.
Sandy
David 10:19 pm on February 15, 2008 Permalink |
Sandy;
Thank YOU for sharing your story. As I mentioned to you on the phone today so many other individuals have contacted me about similar events but would not go on the record to put their story out there. I feel very strongly that it is so important to build a forum to share insight and common experiences. As I mentioned to you, I know how I felt when I was searching around for answers and could not find a real voice or person to talk to who had opted for PFO closure. After our discussion, I plan on going back to some of my old notes and fill in some of the voids I left out during my recovery. I think it will be useful for all who may be considering the option I selected.
ps-I’ll pull together the contact information I promised you and email directly
Thanks again Sandy for your story and please keep me updated.
David
David Dansereau 8:25 pm on February 28, 2008 Permalink |
posted for Melissa by David (originally appeared in ABOUT section)
Melissa Smith Says:
February 28, 2008 at 1:06 am
Hello,
I found your story and it struck me so profoundly that we are so very much alike in our case history.
I am 38 with three children and husband good shape, non- smoker, BP of 98 / 68 decent cholesterol and had a TIA / Small Cryptogenic Stroke in Oct. 2007. My history of migrane with aura goes back many years and two years prior had an “event” that sent me to the emergency room only to be told that I took a medication too close together and and was sent home with no further testing. 6 months later after telling my physician about recent unexplained panic attacks that I was having before falling asleep , episodes of vertigo, aura without migraine and numbness in the back of my head, I was sent for an MRI / MRA which showed an infarct or small “white” spot. I went to the Cleveland Clinic for testing for MS and was told that most likely that my symptoms were Migrane related , the spot she was “unimpressed” with and felt that it could have been there since birth and the other symptoms were for lack of words “in my head”. Very frustrating. Life goes on.
This leads up to Oct. I was coming back from a business trip with a friend (thankfully she was driving) and my right side started to go numb. It started with my face including my eye and tounge and radiated into my arm and leg. It stunned me at first and I thought I had pinched something and began to slap my face and arm and jerk at my leg trying to get the feeling to come back. It seemed to only last a few minutes and started to go away . By then , I felt that the likelyhood of a panic attack were good so I popped an ativan and took an excedren migrain tab which I had in my purse. Since my vision seemed blurred ( not like the aura) but I was hoping it was a migrane related incident. After some time passed I tried to make light of it and saw a Dr. the next day. I had an MRI / MRA which in fact showed the TIA. The Radiologist was even able to tell me that it was within the last three days not knowing when I had the event. Two days later I had reisdual arm weakness and became very upset and landed in the emergency room. Was sent via ambulance to UPMC to rule out another event and from there I had numerous blood draws for clotting disorders etc another MRA, an Echo all showing nothing but the previous event that week, which was a relief. I was put on Aggrenox which made me horribly sick for about a week. It was awful but I knew I had to take it until they figured out what was going on. It was when I had the TEE the PFO was discovered. My cardiologist felt very strongly that it was in fact the culprit. At this time I had been seeing a Neruo at UPMC in Pittsburgh and he discussed with me that there was a Cardiologist at the hospital in connection with him that was taking part in a PFO / Stroke / Migraine with Aura study and the Starflex closure device. I went to see him and after discussing all my options I rolled the dice and joined the study and was dealt the card to rec’ the closure device. I went in just on Valentine’s day for my surgery and during the proceedure they discovered that I also had an ASA ( atrial septal aneurysm) next to the PFO that they repaired at the same time. The surgery went very well, the staff was wonderful and I am feeling great other than the fact that I threw my back out 3 days after due to not putting much weight on the leg that the surgery was done on and bent down to pick something up and presto! Muscle spasm for 3 days.
I am feeling so blessed and fortunate by having the small signs that led to the surgery since so many others were not so fortunate. Other that thinking that I am a little forgetfull once in a while I do not have residual effects and cannot wait until I can get back “normal” soon. I am very positive and am a huge Oprah fan and saw that you had some ah ha moments from her show. I too have had this same feeling and am currently reading the New Earth Book and look forward to making some really positive changes in my life and living to the fullest . There was a fellow Cardiologist at my local Heart Dr. that was the same exact age as us whom did not fair so well and is relearning to walk and talk and will most likely never practice medicine again, I think this is why he felt so strongly that the PFO was the cause and wanted me to get it closed right away. My mother also knows a young man , I believe mid thirties also that had a major stroke at the dinner table with his wife and children watching and he told her that he had migranes with aura since he was very young.
I think there is a huge connection with this and I think that it is equally puzzling that so many are in our age group.
It was wonderful to read about your story and hope that by sharing mine you may gain something from it.
Sincerely,
Melissa
David Dansereau 1:29 pm on February 29, 2008 Permalink |
Hi Melissa;
Your story is so amazingly similar to mine. I appreciate you taking the time to share the details of your journey especially the time line on how you arrived at being able to close your PFO. Many individuals have called me “off the record”after reading my story and were told their best possible option for closure was to enroll in a similar study to the one you mentioned. The general feeling is that these individuals do not want to enroll because they want to get their heart defect repaired and not have to live with “Not knowing”. It is to that end that I stay motivated to help advance the education and recognition /screening for PFO/ASD. Each time I hear a story like yours my commitment is strengthened. Thank you. EVERY time I hear of a case where the results were not so good, like the examples you shared, I get angry that perhaps more could be done.
I just learned a short while ago of a high school boy in my area that went into his basement to lift weight and later was found dead. It was determined the cause of death was he had an undiagnosed PFO. I know that could have been me. and that is why I feel the most compelling point you shared in your story is when you described feeling blessed and fortunate and having the small signs that alerted you something was not right. Those signs and your outcome happened for a reason, in my opinion, as they did in my case. I hope I can count on you to help with this cause in the future. For now, sharing your story was a big help. Best wishes in your recovery, David
Jeff Porter 12:30 am on March 4, 2008 Permalink |
I’m a longtime distance runner and, as of 1998, a stroke survivor. My PFO was closed on June 25, 2007, in St. Louis, Mo. Thought Tedy’s story was pretty amazing as well. My personal history, including a link to a video of PFO closure, is here: http://stroke-of-faith.blogspot.com.
Vicky Stewart 10:34 pm on April 24, 2008 Permalink |
It all started with bunion surgery……….
In October 2005, at 49 years of age, I had bunion and 2nd toe hammertoe surgery on my right foot. As my particular case was a little more complex than average, I was required to be non-weight bearing and in a surgical cast from my toes to my knee for what was estimated to be 8-10 weeks. You know those medical “risks” they always tell you about but you never knew anyone that it happened to?? Well, it happened to me… DVT and PE (deep vein thrombosis and pulmonary embolism) in other words, blood clots. It seemed all had been going as well as expected until at about 6 weeks post op when I had a fall off my crutches and banged my knee (hard) on the landing of my kitchen step. I believe that was when the blood clot must’ve dislodged itself from the vein behind my knee and traveled to my lungs and heart. I didn’t immediately realize what happened. A few hours later, I became short winded and struggled a bit to move comfortably from one room to another in my very small house. I didn’t understand what was going on, and thought maybe my shortness of breath was due to my being overweight, or it was the start of bronchitis or some other respiratory ailment. After all, it was November… the Friday before Thanksgiving. My husband asked if I thought I should go to the ER. I said, no… let’s just wait. If it gets worse, I’ll go. I had an appointment scheduled with both my podiatrist and my internist on Monday and not wanting to appear a hypochondriac, figured this could wait until then. Over the weekend, my shortness of breath upon exertion continued, but really didn’t seem to get any worse…. And it only bothered me if I was up and about, not when I was resting.
On Monday, 11/21/05, the podiatrist visit determined that my toes were doing excellent! I didn’t bother to ask him about the shortness of breath; it didn’t seem to be foot related. I did ask though why the toe that was repaired for the hammer toe appeared to be bruising now 6 weeks after surgery. It looked a little purplish when I had my foot resting on the floor, but would go away when I elevated my foot (more on this later). He simply indicated that it was not unusual, sometimes that happens but should go away. I left his office, and continued on to see my internist.
It took a lot of effort to walk from the parking lot into my internist’s office. By the time I got inside, I was completely exhausted and was having a very difficult time catching my breath. My appointment was for a standard office call… med refills, etc. I mentioned to him my shortness of breath. He listened to my chest and didn’t like what he heard. He told me to go over to the hospital and have a CT scan done, just to be on the safe side. He said if all is well, they’ll send me home… if not, I’ll probably be admitted. I did as I was told, again walking from parking lots to buildings two more times before the long walk down the hallway to the Radiology department at the hospital, stopping about every 5 steps to catch my breath and take a sip of water. I don’t know why it never once occurred to me to ask for a wheelchair. Thankfully my mother had been with me all day, and was lending assistance both in driving and walking.
The technician performed the CT scan and when finished told me “ok, go on home and if the radiologist sees anything your doctor will call you”. I was surprised that no one was going to look at the x-ray right away since my doctor had said they might keep me. But, who was I to argue? I left the examining room and with my mother beside me began my decent back down the hallway readying for our leave. Moments later one of the two technicians came rushing out of the examining room calling my name and pushing a wheelchair. She asked me to sit down and to please wait in the patient waiting room for a couple of minutes. She seemed worriedly anxious, so of course this concerned me but I really didn’t know what the cause of her anxiousness was. A few minutes later she came out and sat with me, explaining that the radiologist had not yet looked at the x-ray, but the other technician saw what appeared to be blood clots. He told her to “catch me” before I left and have me wait. After the radiologist read the x-rays, the technician came out again and explained that I was going to need to be admitted for the doctors to do more tests. After a long day and evening of doctor appointments and waiting in ER I was finally admitted to my local regional hospital
I was told not to get out of bed. I wasn’t to move around much because the doctors were concerned about the clots dislodging and causing a stroke. The next day, the cardiologist from my intern’s office came in to speak with me. He explained that in addition to my lungs being heavily peppered with PE (pulmonary emboli) I also had a clot in my heart. He wanted to do more tests before deciding how to address this issue. I spent most of Tuesday and Wednesday having tests and waiting on specialists to examine the results.
On Wednesday evening, the cardiologist again spoke with me and explained that a very large PE (a 7” clot) had lodged itself in a hole in my heart and every time my heart pumped, the tail of this blood clot was being sucked into the mitral valve. (At this point in time, I did not know that this hole had a name… PFO). The fear was that any excessive movement could cause a piece of the clot to break off, get sucked through the mitral valve and travel to my brain causing a stroke. Suddenly, my entire life was changing and I had no control over it. I felt like a ticking time bomb. Particularly after my cardiologist told me that after 25 years in practice… “I’ve never seen the likes of this before!” He admitted that he didn’t have a clue as to how to proceed, and was very hesitant to go in after a clot for fear of dislodging it and making matters worse. He wanted to contact other specialists for their opinions.
I spent the next 4 days lying in that hospital bed…. waiting. For what, I wasn’t sure. I cried. I prayed. I cried some more. What was happening to me? Was I going to die? No one could give me assurance either way. Thanksgiving came and went. My cardiologist wanted to have an IVC filter placed into my vein to prevent more potentially fatal pieces of PE from traveling from the DVT in my leg up to my lungs. The vascular doctor didn’t agree. So many people… so few decisions. I felt hopeless. My husband became agitated and tired of playing this waiting game. He called a very dear friend of ours who is a nurse in the vascular department at the University of Michigan hospital in Ann Arbor, MI and he asked for her help. “How do we get Vicky out of this hospital and transferred to U of M Hospital?” She quickly got the ball rolling and had the vascular doctor that she worked for agree to admit me. After 7 days in the local hospital with virtually no change in my condition, just waiting, I was being transferred to a state of the art Level 1 trauma hospital. No more fooling around!
I arrived by ambulance at the U of M Hospital, and after a brief assessment was taken into OR for the placement of the IVC filter. Dr. Thomas Wakefield, my new vascular surgeon, was taking charge! Within two hours of my arrival at U of M I was “filtered” and back in my room to finish up the registration paperwork. I had a new sense of hope. I felt that at least things weren’t going to get any worse at this point.
Twelve hours later, my heart was literally in the hands of Dr. Stephen Bolling, cardiac surgeon. He performed open heart surgery on 11/29, utilizing a cardiopulmonary bypass to take over the work of my heart while he removed the clot from the IVC (inferior vena cava), the right and the left atrium. He later shared with me that he had never seen a clot that large before, and this was only the second time he had ever had to perform this particular surgery – removal of a cardiac mass from a Patent Foramen Ovale (PFO).
The next few weeks were a struggle. I remained in the hospital. My glucose levels went out of whack, my liver went into shock from all the pain killers I was on, my mental state was deteriorating, my veins were collapsing from all the blood draws, my PT levels were not stabilizing. I was in the ICU twice more while the hospital staff tried to regulate my meds and get my liver working again.
All the while, remember my hammertoe…. It was now 12/4 – 13 days after being admitted to the first hospital. My toe was becoming an increasingly darker shade of grey/purple/blue/black. Dr. Wakefield felt that it would probably recover, and had been caused by yet another clot traveling in the opposite direction, thus blocking the blood flow in a vein going to my toe. At this point, he just wanted to keep a watchful eye on it. The cast had been removed upon my admission to U of M, and therapy had me ambulating with a walker and an air cast in order to recover from the heart surgery. My toe hurt so badly whenever gravity caused blood to flow downward. I swear the pain I had in my toe superseded ANY pain I felt after heart surgery! As well, my legs and feet started swelling. The stitches from bunion surgery were now ripping apart. It was so hard to walk through the pain. My husband is a believer of “tough love”. He pushed me to walk. I wasn’t the best patient, believe me. I am stubborn and obstinate. It HURT so badly to walk! I didn’t want to do it!
On 12/6, it was determined that my toe had become gangrenous and would need to be amputated. Dr. Wakefield wanted to wait a few more days to allow more time for demarcation (the process where a clear delineation of good/bad tissue could be assessed). I was still having a few other problems with atrial fibrillation and the stabilizing of my anti-coagulation levels, so I remained in the hospital.
On 12/13, I went into surgery for the 3rd time in the past two weeks. This time to have the gangrenous toe removed. I was both saddened and relieved. I was sad, of course, to be losing a piece of my body. On the other hand, I was in SO MUCH pain that I thought if this is the ONLY way to get some relief… then get rid of that toe!
On 12/16, I was sent home to recuperate. If walking had been a chore BEFORE the amputation, walking became even MORE of a chore afterwards. The pain was beyond belief. I don’t know what I expected, but it wasn’t this! The bunion surgery had been uneventful. Even the discomfort from heart surgery had been well managed with medication. But THIS… oh my goodness… nothing brought relief to the pain in my now missing toe. Again, heart therapy required that I walk… foot therapy required that I keep the foot elevated. What a conundrum! Either way I was at odds. I continued to be stubborn about walking, because of the pain in my foot. Both of my feet continued to be severely swollen and any pressure at all made the skin feel like it was ripping. I have paid for that stubbornness since. It took much longer than necessary to regain my endurance and lung capacity.
It’s been a long struggle back to living a slightly more compromised, but comfortable life – well over a year. I am currently about 95% back to normal (for me). I’m lucky to be alive… many a doctor and nurse have reminded me. The statistics for death with DVT and resulting PE are astonishing. I am one of the lucky ones. I am a survivor.
Amy G 2:18 am on May 8, 2009 Permalink |
I had my ASD/aneurysm repaired on 5/5/09, I feel great, so far no headache. I was told I would feel chest fluttering, but I had so much of that prior to the closure that the irregular beats and fluttering are improved. I would think that I had some placebo procedure, were it not for the CD of my procedure and the follow up echocardiogram. It’s hard to believe that you would have to endure open heart surgery to close these defects in the past. So far no headaches, and my mind seems a little less fuzzy!
Jenna Rasmusson 3:42 pm on May 28, 2009 Permalink |
David,
Thanks for your work on stroke awareness and Tedy’s Team. I know you are familiar with AGA Medical Corporation.
We have just launched a new stroke awareness campaign called TacklingStroke on Twitter, Facebook, and YouTube. It features video testimonials from professional football player Tedy Bruschi, who had a stroke in 2005, recovered fully, and was able to resume his career.
Starting this week, we’re posting important stroke awareness facts as well as links to resources, events, and organizations to our Twitter feed and our Facebook Group. We’ll also be linking to the TacklingStroke YouTube Channel, where every week we’ll be posting a new video of Tedy Bruschi discussing stroke warning signs and his own experience with stroke and recovery.
The goal of the campaign is to educate as many people as possible about stroke, and hopefully help save lives.
As you are a thought leader in the stroke awareness community, I hope you’ll consider mentioning our TacklingStroke campaign on your blog, and even participating in it yourself. Please feel free to embed our first video from YouTube if you’d like (http://www.youtube.com/user/TacklingStroke ).
Thanks for taking the time to read this email. Please don’t hesitate to contact me with questions, or suggestions about how we can make this stroke awareness campaign a success.
Jenna Rasmusson
Senior Market Development Manager
AGA Medical Corporation
CAMPAIGN LINKS:
Twitter Feed:
http://twitter.com/TacklingStroke
YouTube Channel:
http://www.youtube.com/user/TacklingStroke
Facebook Group:
http://www.facebook.com/group.php?gid=89631292815
deena ouellette 4:21 am on June 2, 2009 Permalink |
I suffered a stroke when I was five years old. This was in the year of 1972. I want to thank you for sharing your experience. For years I thought that I was the only young person to have suffered one. It is comforting to know that I am not alone in this fight.
Please stay strong and continue to be a voice for all of us. Unfortunatly there are cruel people who don’t understand what we have been through, thier lack of understanding can make life for us very difficult. Please fight on for all of us.
Thank you
Wendy Wright 4:17 am on September 9, 2009 Permalink |
For all those who have had a PFO/ASD, PLEASE make sure to check other family members to see if they have the same condition.
Our daughter who turned 20 earlier this year had her PFO closed on April 2. She was having severe headaches and was seen by a neurologist. An MRI was preformed and 7 white spots were found on her brain. She was referred to a cardiologist for an echo with TCD test (bubble test). The TCD test had a ranking on 1-5 (5 being the highest), she had a 5.
We are grateful we had it closed because she also had a deep pocket that could not have been seen on an echo. No amount of medication could have prevented blood clots from forming in the pocket area. The doctor was able to close the PFO and the pocket with the same device.
Fast forward a couple of months….I decided to go in and have the TCD test done to see if I had the same problem. I did not have headaches but I was tired all the time. I also had a hard time exercising. As it turns out, the result of my TCD test was 5+. I was required to have an MRI and results of the MRI showed scattered white spots. My surgery is scheduled for later this month.
We are in the process of having our other 3 children tested. (It is common that several family members can have the problem)
I was told about a family in Idaho where over 30 family members have been tested and 2/3 of family members have the condition so far. This seems to be a genetic thing.
I am in the process of contacting all my siblings and extended family to let them know about the potential problem.
More people need to be educated about this. After all these years of feeling like garbage, I am thrilled to FINALLY figure out what was wrong and have the problem fixed.
Leigh Perry 3:16 pm on August 4, 2010 Permalink |
My son Tyler suffered a stroke at the right MCA territory. Unlike your stroke Tyler was checked for a PFO and his heart showed no abnormalities. This being very good news, he was examined for anything and everything else under the sun. At 14 years old, Ty ‘s situation baffled the doctors and I guess you could say “annoyed” them too. It was a very frustrating time for Ty and the doctors because they were concerned with finding the source so that there would be no “repeat offender”. We spent two weeks at Hasbro (WONDERFUL) hospital where numerous tests were done and then we were finally released to Spaulding Rehab in Boston with the medical exams to continue under the Mass Genneral Stroke team. Again I can’t say enough about the care we received! Unfortunately for all, the source of this unfortunate incident was never fully discovered and now we are both back at home working hard in three different therapies (why they are not fully covered for situations like this is beyond me!) but he has done remarkably well with his own determination, lots of care and advice and support from everyone. We have learned alot and still need to learn more so any advice or ideas from others is absolutely welcome! Thanks for the book David! Sincerely Leigh Perry-Ty’s proud mom
David 2:04 pm on August 12, 2010 Permalink |
Hi Leigh;
Thanks for sharing Ty’s story here. Pls. let me know if I can be of any help. I am working on trying to make available more resources for stroke survivors as well as improve education through this advocacy blog as well as with my work with the ASA/Tedy’s Team and our newly formed PFO Research Foundation. As you pointed out, there is so more work that needs to be done with stroke detection, education, and coordinating comprehensive, effective rehab strategies that will get reimbursed fully (especially for young survivors!!). I’d be interested to know more about Ty’s journey and specifically what you all could use for additional help.
In the meantime, if it hasn’t already been suggested to you, pick up a copy of the book Stronger After Stroke by Peter G. Levine, it is a wonderful resource for survivors and caregivers. Also, I had reached out to both Bill and Sharon, so I am glad we have made a connection. Keep me posted or call if I can be of further help to Ty and your family.
ps- Not sure about the BGH connection with stroke but I do know there are many environmental factors contributing neg. to our health.
Try http://ewg.org/ to look it up